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General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> New Member: Advice, Please? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1298245505 Message started by summerfields on 02/20/11 at 11:45:05 |
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Title: New Member: Advice, Please? Post by summerfields on 02/20/11 at 11:45:05 Hi, I’m a new member here today with a few questions, and I hope I’m in an appropriate forum to start. I’ve been on the hunt for a diagnosis and much-needed help for over 25 years. I discovered Mast Cell Activation Disorder on the net a few years ago and everything fit so perfectly, I have believed ever since that this must be what is going on with me. The more I read, the more sure I have become. When one has a chronic and mysterious life-altering health problem, one needs not only help, but also validation -- you can be overwhelmed with the “It’s all in your head” responses. In a nutshell, I’ve been feeling generally sick, often disabled, since 1985 with what was first called Chronic Fatigue Syndrome, Fibromyalgia, and then other such things that are considered Immune Dysfunctions of one sort or another; but on the very top of the heap of troubles-that-must-be-addressed, is the fact that I go around reacting to an outrageous number of foods and drugs, so that I have little left to choose from in healthy foods, and nearly no medications. Many illnesses are going without necessary medications because of this. Medications that I took for years and which then started causing anaphylactic-type reactions, and other drugs that I took only once when wild, frightening things would occur. Virtually no one has believed me. I woke up from one surgery and heard the nurse laughing loudly with her co-workers at all the “so-called allergies” I had typed on my list, saying I had to be crazy, and truly, all doctors have told me that such a list of allergies is impossible, insinuating that I am delusional, one telling me in so many words that I “made it all up”. Such drug and food allergies have sent me to the ER several times, and each time, the medical team have taken much time getting to me. My average waiting time in the ER is about four hours -- by then, I have always improved, and ultimately survived, fortunately. I believe I have a Mast Cell Activation Disorder, by whatever name anyone wishes to call it. It makes perfect sense, from everything I have read. My “allergic routine” is that when eating certain problem foods, or when a problem drug hits my bloodstream, I will suddenly go ice cold, my blood pressure drops and my heart rate goes into tachycardia, I will be wildly dizzy, my vision blurs, and blackness starts washing over me in waves. So far I’ve not gone completely unconscious, but I get close to it. I can either turn white, or get hot and red. This happens with far too many “triggers”. It has happened to all antibiotics I have tried, except for Cipro, that’s all I have left. What happens when it goes? I have three pages of listings of my adverse reactions, in small type, that I carry around with me, in case of emergency, along with an outline of my general health issues. I’ve had problems with diarrhea about five days a week, for 20 years. I hurt all over; I am so fatigued I have sometimes gone to bed for months at a time. I manage to stay upright most of the time, but all hours of the day are difficult. I do get hives, and rashes. Not the kind of rashes I see on Mastocytosis pages. But I have no doubt that I have a body full of “Mast cells behaving badly”, that seems to be the story of my life. I’ve noticed that anytime I go through a special period of stress, I will lose a few more foods. Attempts at exercise make everything worse. Perfumes make me sick. I’m at a bad place right now, as I need dental treatment asap requiring anesthetic, so this past week I maxed out the charge cards and went to Mayo Clinic and took my carefully collected notes to Dr. Weiler, who is said to be good to consult about Mass Cell Disorders I regret to say that she kept pointing to my pages of symptoms and insisted they were not indicative of allergy reactions, or MCAD. I know that they are. She kept saying she thought I was probably just having anxiety attacks. I know that they are not. I should have anxiety attacks over taking aspirin or Advil -- after many years of taking them successfully? I should develop anxiety attacks over drugs like Minocycline and Glyburide, which I had previously tolerated just fine? I should have anxiety attacks over eating tomatoes and long lists of other foods that I had eaten -- and enjoyed -- all my life? She gave me the Tryptase test, which was normal -- as I expected it would be. She gave me the 24-hour urine test which I will get back in a month, she said, but I expect it will be normal, also, as I was not having any reactions during those tests. Why are they even given credence, when it is known they will not likely show anything while “nothing is going on”? She did the Dermographic test on my back -- that was positive. And some part of the blood test that showed my allergic state was “225” when normal high limit was said to be about 125. I’m not familiar with that one, so not sure of the numbers. I had also taken her my print-outs of results from my previous allergy doctors, so she would know I wasn’t making it all up. She didn’t think much of those tests, though, and ended by reiterating that she thought I was probably dealing with anxiety symptoms. I realize now I should have copied the information from the Mastocytosis Society web page, with the listings of my symptoms right there in black and white, to show her, as she kept saying I was not a candidate for Mast Cell Disorders or even Allergy Disorders. I couldn’t believe the response I received from her, I am still feeling shocked. I went for help, and validation, and got quite the opposite. It was another instance of being told, in other words, “It’s all in your head”. So, I am at a loss as to what I should do next. What is timely right now is that I need a root canal, and soon. I went to several dentists and endodontists so far, and actually started a root canal with one who made me feel comfortable, he assured me it would be “a piece of cake”. But shortly after he gave me the injections of Carbocaine, the troubles began: I started feeling very sick, and started going black, in waves of dizziness and faintness. So strongly that he immediately quit, although he had already started a hole in my tooth. Here I am, hole in tooth. I have to do something, but I will admit, I am now quite anxious about the next anesthetic injection. And no dentist wants to touch me. They tell me that I should consider Conscious Sedation, but that still requires the anesthetic, plus More Drugs on top. Question #1: Can I reasonably email one of the doctors in Boston that I have heard about, and pass on this info, asking for advice? #2: Those of you who have similar serious reactions, what can be done about dental work? Working on the outside of teeth, I can get by, but not drilling out the roots. I’m considering just pulling the tooth, but the roots go up into my sinus cavity... I will be driving three hours tomorrow morning to go and see another dentist (if the snowstorm allows me). All advice welcome, thank you. |
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Title: Re: New Member: Advice, Please? Post by Lisa on 02/20/11 at 15:59:20 Hi Summer and welcome to our forum! I'm really sorry for all the grief you're going through! It's definitely horrible when you've not got a diagnosis yet because then doctors don't know what to do for you. It's also hard for us to help you for we don't know if what we advise you might help or end up harming you. So, Summer I don't know what to say. I guess that all I could do is to tell you that if you take a copy of the masto protocols we have listed here and take them to your doctors and suggest that they try those medications with you prior to your treatment that this may be a good thing. Then, if anything seems to go wrong during the treatment they should back out of it. Summer, the reason why this is so difficult is because there are other diseases which can mimic masto. If you read information on the Carcinoid Syndrome you'll see that the patients have almost the very same constellations of symptoms and what they do isn't anaphylaxis but called the carcinoid crisis which can mimic anaphylaxis! Yet, if you give those patients epinephrine, just presuming it's anaphylaxis, you can give them a heart attack! They do take antihistamines because they do have histamine release involved in their disease, but they also got other hormones involved and because it's a cancerous tumor which is causing all the grief, it's a very complicated situation! You could also be working with Lupus that is mimicking masto. So, you can't just look for yourself and say, well this seems to fit the bit, cause that's very dangerous and you could end up persuading a doctor into thinking that it's something that it's not and that gets him into trouble and could even kill you. We can try to help you Summer, to tell you what tests your doctors should run on you to find out if it's masto or something else but until your doctors can either eliminate everything else or find evidence that it's masto, it's not easy for us or they to help you. For your sake we can't just go on what it sounds like even as much as we would like to because of how difficult it all is!! Tell us, what tests have you had run on you so far? What are you showing that is off and altered? What kinds of doctors have you seen? Have you seen an oncologist who specializes in carcinoid syndrome and investigated you for it? All of these things may help us help you try to pin this down a tad. Lisa |
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Title: Re: New Member: Advice, Please? Post by Lisa on 02/20/11 at 16:04:23 Oh by the way, as to the conscious sedation with dental extraction, this is what some of us have to do, Summer. But if you do have masto, then the type of local that the dentist used could be an important factor too. Go to the section for the medical protocols and take a copy of this to the dentist and ask his opinion They are medications that most people rarely have bad reactions to and perhaps he'll feel that it may be what he needs to get you through this without problems. However, again, without your having been worked up for the carcinoid syndrome, all of this is very questionable and if the dentist could put in a temporary filling until after you can get some real medical investigating done to at least give them an idea to try to point the finger in the direction of carcinoid, lupus or masto, this would be best!! You don't want to make yourself sicker, do you? So having more information is what is needed. So you might want to consider this. Lisa |
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Title: Re: New Member: Advice, Please? Post by DeborahW, Founder on 02/20/11 at 17:04:20 Hi. It sounds to me as if you have IA or MCAD, because your symptoms sound just like anaphylaxis. I am not familiar with your Mayo doc, so I cannot comment either way, but it doesn't sounds as if she was very good. I don't suppose that you could afford to go out to Boston, could you? I can really see Dr. Akin doing a consultation with you and helping you find an answer. Do you mind if I ask what state you are in? That might help us recommend someone. In the meantime, have you tried the histamine blockers that you can buy over the counter, such as Zantac and zyrtec? If so, tell us what doseage you are taking and you can compare it with what we take. In the meantime, you can take action to helping yourself. Read my tips in the how to help yourself section, and I really think they will give you some things to try. :) |
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Title: Re: New Member: Advice, Please? Post by summerfields on 02/21/11 at 03:21:03 Thank you for your responses. I hadn't heard of Carcinoid Syndrome before -- thank you, Lisa, for the suggestion. I have Googled it, and really don't recognize it as being mine, too many symptoms in the mix that I never have. I respect the concern over mis-treating. I have wondered, myself, when I should use the Epi Pen, if my heart is already firing like a machine gun at a reaction. Over the past 25 years I have been tested for Lupus a few times, and various other things like Lyme disease, all come back negative. The only thing we were ever able to call it, as an overall -- but nebulous -- title, was Chronic Fatigue Immune Dysfunction Syndrome, but under that umbrella, it's always been a mystery why so many of "us" are riddled with apparent allergy reactions, to so many substances. Not all CFIDS sufferers are "allergic", but very many of us are. I have been to a famous allergy clinic in La Crosse, Wisconsin (Allergy Associates), quite a few times over the couple of decades, and they have always (always) said that my reactions are, indeed, anaphylactic and serious, and coming from that, I was nothing short of astounded when Dr. Weiler said that they were not allergic, nor anaphylactic; she said that if I was not swollen or gasping for air at the same time as all my other symptoms, they weren't allergies or MCAD. At Allergy Associates (I'll call it AA), they fully recognize that everyone reacts with different "packages" of symptoms. That said, sometimes I do have lip, tongue and throat swelling, all by themselves. At AA, their process is to treat allergies with sublingual antigens, rather than the usual desensitization shots that most American allergists give -- the reason being, some folks can become anaphylactic with shots -- I always reacted to them, myself, when I used to do them. The under-the-tongue treatment is a more standard approach in Europe, considered safer, and each time I am at AA, I listen to people in the waiting room tell how their lives are so much better since doing the drop treatment -- so I know it is valid. Mayo Clinic has always been outspoken about not wanting to "go there", and there seems to be a real rivalry going on between them. So maybe my taking in my records from there, put the lady off, I don't know. Whatever, when I used the sub-lingual drops from AA, I eventually began to react to them, too, no matter how small the dose (a very unusual response), so I have not continued doing them, and am still looking for the root of the problem and better answers. I think MCAD is the root. I wish very much that I could go to Dr. Akin in Boston, and I would abide by whatever he says, or his associate there. But it would require a miracle. My husband and I have exhausted all our funds and charge cards to do what we have, this trip down to Mayo last week was the last resort. If Dr. Akin or his associate would be willing to communicate with me by email, I'd be grateful, but I know that would be asking an awful lot. I have all my records and history compiled neatly, ready for sending, and discussing. I'm in the upper Midwest, US, near Duluth, Minnesota. I've seen an oncologist here, but she said she had no knowledge about MCAD, only the cancerous form of Mastocytosis, which I do not think I have. Now that Dr. Weiler has put me off about it, I'm afraid no other doctor is going to want to venture beyond her professional word, they would think, "Who am I to argue with Mayo Clinic?". Still, I am waiting on the 24 hour urine test -- I just do not expect it to show anything. I had to put off my dental work until next week, as we just had a major storm up here and the roads were too bad to travel. I normally do a 3-hour drive to my favorite dentist, as he is the best one I have found, so far, who respects my sensitivities, a very conscientious person. Although even he is starting to get afraid of me by now. A long time ago, he had replaced all my old mercury amalgams with safer materials. I started going to him about 20 years ago, when my symptoms were still fairly new to me. I've tried everything I could find over the years. I believe I've narrowed it all down to the true culprit -- for what that's worth -- and I'm just floored that Dr. Weiler blew it off so abruptly. I even proved to have the "writing on my back". |
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Title: Re: New Member: Advice, Please? Post by summerfields on 02/21/11 at 03:50:37 "...have you tried the histamine blockers that you can buy over the counter, such as Zantac and zyrtec?" I have brand new Rx's for Pepsid and Zyzal (sp) and Singulair. Dr. Weiler wrote me those, while saying that she didn't think they would help me, but it "couldn't hurt". I used to take Zyrtec for seasonal inhalant allergies (I reacted badly to Allegra), and it was going along fine with me until a couple years ago, when I started going to sleep for three hours every time I would eat something. Weird, it never did that before. That not practical, I quit using it. After reading stories on the net, I learned about the Zyzal and asked for it. I will try it this week, for sure, and see if it will agree with me. I know it isn't made for food & drug reactions. The Pepsid -- is that the same thing as Zantac? -- I have never tried. If it helps my stomach, I'm willing to give it a go. Will it actually help with allergic reactions? The doctor didn't explain it. I have yet to do my research on it. I didn't ask her for Gastrocrom because I had read about too many negative symptoms with it. Lord knows, I can't take any more. I asked her for Singulair, since I've seen it on the lists, although she cautioned me that it can cause depression, and I had heard a while back that there was a link with it to suicides. I sure hope it doesn't affect me that way, but I thought I would try it just before any medical work, use it conservatively. I'll be happy to hear how these have done for all of you, what I should know about them, what exactly they can be expected to help with. |
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Title: Re: New Member: Advice, Please? Post by DeborahW, Founder on 02/21/11 at 03:51:59 First of all, you DON'T share the mayo results with new doctors. That doctor is not right at all in regard to the breathing/swelling problems. I never have either of those, which is exactly the reason that no ER docs ever knew I was in anaphylaxis. I was diagnosed with mast cell disease by a doctor at Rush hospital in Chicago, and then received the specific diagnosis of IA by Dr. Akin. I can give you the email for Dr. Akin, but he won't be able to treat you via email since he has never met you to evaluate you. HOWEVER, he is very kind and would probably give you some pointers, and maybe even a referral to someone good near you! :) He is also fine with working with your local doctor on advice for what to try. This works well for me, as I have my local doc and Dr. Akin will help out whenever my doc is unsure of something. |
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Title: Re: New Member: Advice, Please? Post by summerfields on 02/21/11 at 04:07:25 I could possibly manage to eventually get to someone else in the Midwest. I had wished to see Dr. Akin a few years ago when he was in Michigan -- that I could do -- I was sorry to learn he had moved. So yes, I would love to have Dr. Akin's email, and I would try to keep my tale as concise as possible (you can see how hard that is). ;) My local doc is the one who had to give me the referral to Mayo -- they wouldn't let me in for Mast Cell discussion without it. I dread having to discuss my Mayo result with her, but she will, of course, want it. |
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Title: Re: New Member: Advice, Please? Post by Riverwn on 02/21/11 at 04:19:22 Oh Summer, I am so sorr for what youre going through. Most of us have walked that sad road and it takes the average masto patient 9 years to be correctl diagnosed, so dont be downhearted!! Youre here ith us.. its gonna take some time but youre gonna be ok!! Have faith and stay with us and ask an questions you want. OK lets tackle one thing at a time. MOST doctors are just like that Dr Weller--not educated in Masto and they don listen well when they cant solve it simply themselves. You need 2 things first--a primary dr that will work with an expert.. then you need an appt with an expert. The Primary--look in the field of Hemotology.. Tell him you have an appt with Dr Akin for diagnosis of an MCAD category. Dr Akin is the perfect choice to have as expert.. Make an appt NOW. He is very requested and you probably wont get an appt for a good length of time--time to figure out finances. He is an angel. He WILL work with your primary dr.. he cant do it with you over the phone until he sees you in person , understand? When you see him, Dr Akin will rule out Carcinoid by testing. He will give you the answers you so desperately need now. I want you to take that page you call allergies and re-title it to "Psuedo Allergies" and "Triggers that push me into Anaphlaxis". Most of us have a handful of REAL allergies but a HUGE list of Triggers--there is a list here of triggers--print them out. Remember that triggers react like allergies. and they are treated just like allergies because they can push you into anaphylaxis. Debbie is right, try a few different over the counter antihistamines and see if you feel better.. That wont hurt you and if it makes ou feel better that points us to a better understanding of where you are health-wise. Try something like Zantac, zyrtec, Claritan.. and let us know how you feel. OK Hon, you have ALOT of reading and printing out to do. 1)Go the the thread on histamines in food--and avoud those like the plague for now.. Read the low histamine diet.. use it for now. 2) Keep a diary of foods/activity/how you feel daily-it will show you patterns to what your triggers are 3)Go to Emergency Protocals thread.. there is a list of protocals there--print them out and keep them with you, keep a bottle of Benadryl with you too. 4)Read through how-to set up an emergency notebook.. and think about how you will set yours up. This is URGENT... when you go into Anaphylaxis you cant think well can you?? This will talk for you. Take it everywhere you go. There are so many other "triggers" that affect us.. READ about them... We are not all the same BUT we are so very similar in most things.. From now on, when you react and need emergency help, tell them you have an "Anaphylactic Disorder" They know how to treat that ok?? When they ask for which allergies, just simply say "Multiple" its easier for them and you, no wasting time or getting into a conversation that you wont win, since they wont understand. OK I lm sure Ive forgtten some things LOL, but this is enough for now.. Time for you to do your homework!!! and which state are you in?? Hugs, Ramona |
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Title: Re: New Member: Advice, Please? Post by summerfields on 02/21/11 at 04:39:46 "Most of us have a handful of REAL allergies but a HUGE list of Triggers" I can see now how that works, it makes perfect sense, looking back. Thank you, Ramona, I will do that printing this week. I know I can't possibly get to Boston in the forseeable future, wish I could. I haven't been able to work since 1986, and while I have been one of the lucky ones who got "Temporary Disability" status on Social Security, I stay financially strapped. I live next door to Duluth, Minnesota. I had never really thought of the Hematology department before. |
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Title: Re: New Member: Advice, Please? Post by Joan on 02/21/11 at 10:35:55 Hi, It took me about 16 years to be diagnosed, and I agree, it's no picnic! I'm disappointed to hear about your experience with Dr. Weiler, as she is well-respected in Masto circles. Did she give you any direction as to where you should go from there (besides to a psychiatrist)? My doctor told me that my problems were not psychological, because anxiety attacks don't wake someone from a sound sleep. If you've been awakened in the night with reactions, then it's not likely to be in your head. My anaphylactic reactions start with anxiety most of the time. I don't think the Zyrtec caused you to go to sleep for hours. It was probably something you were eating that either contained a lot of histamine or caused your digestive system to produce a lot of histamine. If so, the Pepcid should help. Xyzal is a newer version of Zyrtec, and I think it's very good with few side effects. I have just a few additional thoughts. As Debbie has said before, MCAD/IA is a diagnosis of exclusion. It sounds like there still may be a few things to exclude. Besides carcinoid, there's another disease, pheochromocytoma, that can cause similar symptoms. It sounds like the 225 might be your IGE. If it is, and it's elevated, there are other things that can make your immune system go crazy. One is parasites, and I would get checked for those. There are also conditions in the immune deficiency category that can actually cause allergic-like symptoms. My friend has a primary immune deficiency, in which she doesn't produce antibodies to certain bacteria and viruses, and it made the rest of her immune system go crazy. She would get flushing, hives, edema, breathing difficulty, full-blown anaphylaxis, etc. Antihistamines were of limited help. I don't know if an infectious disease doctor or an immunologist might want to test you for that type of thing. If you're reacting to so many things, I can't help but wonder if you're malabsorbing some of the things you ingest. Getting your digestive system straightened out (if you can find something you can tolerate) might help. I hope the antihistamines help you. Be sure to ask your doctor what is the maximum dose you need to take. A "normal" dose might not be enough. Hope you find some answers! |
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Title: Re: New Member: Advice, Please? Post by DeborahW, Founder on 02/21/11 at 10:49:24 You can find a lot of info on our original foum: www.mastcelldisorders.lefora.com. That is our first forum; we just recently moved to this one due to server instability on the lefora one. We are slowly moving all the post from there to this one, but it will take quite a while. So, in the meantime, you can take a look there, too. |
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Title: Re: New Member: Advice, Please? Post by Sandi on 02/22/11 at 07:02:09 Hello Summerfields, I also am in the 25 year undiagnosed stage, very similar reactions/intolerances to yours. I'm guessing they've thrown Multiple Chemical Sensitivity your way also. I have not been to a dentist since I was 11 or 12 I'm now 43. By that age I had had such horrible "reactions" at the dentist I was never going back. WE didnt know thats what they were. #1 don't respond to "in your head" accusations anymore, just smile and mumble, "Right, I mean everyone would want to live this way for attention" and move on from that moron! Ok, now before I forget, Clifford Materials Reactivity Testing http://ccrlab.com/ runs a series of tests that tests your blood reactions to a large variety of substances used by physicians/dentists and lists your reactions and your most tolerated. I've been needing to do this for awhile that way when its time the dentist will have some choices. Just keep in mind just like "allergy testing" this will not be absolute! But it gives me a safer decision making group. Of course many tout this is junk science, that'd be the ones overprescribing medications then re medicating the patient with a new slew of cocktail when the side effects hit, rather than finding the true cause,,,,. Ok, I won't get on the soapbox, but it irritates me. Ok changing subject: There are a variety of over the counter meds as many have said that address mast cell issues, above and that's what I did. I began experimental self treatment and by golly it helped. Possibly really giving some basic protocol a try. The one rx I get is allegra, It has helped me a lot (gastrointestinally) and any GP will give it to you for seasonal allergies! Many take claritin or zyrtec and do fine, didn't help me, Costco is the cheapest place I get it allegra and I love the delivery by mail. Teva brand is a brand I tolerate the best. Evenings I take two benadryl also upon that feeling that all is heading south. So many things cause us to degranulate. I'm still trying to get a few more in the system, but so far I do not tolerate much. What you are willing to give a go just educate yourself on the inert ingredients, and make the best decision possible. I'd really encourage you to just start some sort of antihistimineing and back to you needing to go to the dentist. Print those lists of "typically tolerated" The big one before is to pre medicate with your antihistimines before the procedure, Again we are all different in what we tolerate and make sure your dentist knows what you've taken, you do need to consult before and then go back for the procedure that way he can understand and read your information . Welcome to the forum and really read read read on our other site, just begin somewhere if you feel better then it is worth it. Don't get me wrong I'm not perfect and we all say that, this family of disease needs constant management. I'm in a degranulation frenzy lately, I up my stuff and do my best to avoid what I have to. I wanted to also say I understand being chronically ill for a long period of time and I chose not to look into My "bone health" some of those other trendy things to get all worked up about. I've not been able to eat many foods for 25 years, I've thown up medications and vitamins galore. I do what I can do for my diet and health and constantly try to re introduce something when I'm feeling better. But me knowing How depleted my bones are is just stupid for me. I don't want to take the medications for it, the side effects make me want to laugh, if I could the foods would be eaten but i dont have that choice. So I just rely on faith and I'm doing all I can and thats that. Now dear, just a Sandi intro, I will jump online when I am exhausted in the evening or sometimes during the day and think Oh, I can't be on here right now I have to...... but then I see a post and think OH gosh I just have to say something real quick, and poof welcome to my scattered thoughts! Sandi |
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Title: Re: New Member: Advice, Please? Post by Josie on 02/22/11 at 11:59:28 Hi Summerfields , I picked up you are worried about singulair . i completely understand but wanted to add that I also ahve many triggers . One major problem with meds for me was corn flour and gelatine . with occasional alcohol , vinigar and caramel colour added . I was not confident in any way about tolerating singlauiar . But I have . All the preperations in the UK are safe for me . i stsrted with the granulaes as these are the cleanest with no flavouring or colour dyes . But even the tabs are ok for me :-) The drug works to block leucotrines which reduces swelling in my lungs and throat . Since being on it I ahve more energy :-) and am shocking less . I don't know if pepcid is the same as ranitidine ( ramona ) I am on ranitidine liquid and have been fully since christmas . I am having minimal flushing from bowel activity , demonatrated with bowel cramps , spams , vomiting and diarrhoea / loose stools. I am also now having less cramps and vomiting than I was . I am still swelling in my bwel but having less pencil thin stools / diarrhoea . I am not in the states . Im in the UK . I don't know if you can ask your primary ?? to test fro carciniod of you can't be refered to an oncologist . Another speciality who are aware of it are endocrinology - as they are termed neuroendocrine tumors ( fancy name ). they can also test for a pheaocypcythoma . carciniod has the test 511HA ( urine 24 hr ) and pheao is cateclamines - epeinepherine and nor epinepherine ( urine 24 hour ) . A second test for 100% conclusion for carciniod is chromatogranin A .( blood ) These can be done locally and doing so will enable you to know that an Epi pen is safe :-) proir to this , as Lisa said Epi pens may not be the right treatment unless it is a true IGE allergy reaction . Docs tested me for these for reassurance :-) I didn't fit completly either but these tests need doing :-)))))))))) Have you ever had an epi pen ???? I have had the same experience as you . i got so sick of the in your head thing i asked to see a psych . It is offically in black and white I am sane :-) Not many people can say that :-) I completely agree with Ramona about changing your list names , i have :-) Also about what to say , as I have lost the discussion more than once xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx hugs Josie |
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Title: Re: New Member: Advice, Please? Post by Sandi on 02/22/11 at 17:02:28 Summerfields! Singulair is one I am seriously considering, I've been seing an MD that is also a homeopath and naturopath for a very long time, he feels Singulair is a safe med, now keeping in mind we are "special" so it may not work for all MC peeps, but for the gastro/environmental issues he was really game. I do not have asthma or asthma like symptoms. I believe Deb takes it also when she is "acting up" and is able to get off of it in calmer times. Ramona is totally right in changing "terms" you can say when I eat or am exposed to _________ it triggers me and I begin to ................. we should all use that vocabulary to help the special docs along in their denial! :) Also, survival for a lot of us is balancing real medicine with homeopath/naturopathic things also. It is frustrating it takes so much time to "test" things, I've had things expire before I could test them, Just never had enough "symptom free" days to test something. I like your starting meds those are good, just figuring out a brand that will work for you might be frustrating. I'm still trying for a pepcid. Going to go to a compounding pharmacy soon and speak to them. Somewhere on here Chaco and I were discussing that. She gets it done for several medications. They are able to put only what you tolerate in the pill. I've been out of the workplace since about 89 also. I try my best to save money by cooking pretty much everything from scratch for the fam then theres my food, so I do my best to save as much as possible watching sales etc. I mentally think of it as making money! We are self employed and luckily I can do the bookwork at home! Theres no way I could work, I trigger to too many things. I hope I was making sense earlier on the "osteoperosis" issue. I don't want to seem crazy to anyone doing it! For me personally I have to get my symptoms managed if and when that is finally calm then I could address other possible issues. So for me that is just chasing a concern that is pointless right now. Oh I know what I was going to say earlier about balancing holistic and medical. A lot of us tried to "not use medicine" with this disease that is not at all what needs to be done, this is a serious medical condition ( ummmm you know that by how much trigger and how continuously bad you feel) by the time I came across the mastocytosis info I had tried everything under the sun holistically, I don't believe this can be cured by cleansing and purifying, I've been there and am there! degranulating mast cells just don't care they just like to pick a new thing to trigger too. Don't know if this will apply to you but our "monthly cycle" triggers me terribly. I want to say Joan also but might be someone else, thats the frustration sometimes you can't figure out whats officially triggering you it's a compilation of things filling your bucket until ...... spillage! Ok I will stop babbling now. Everyone is so great here with letting you know what works for them, and thats the key, you have to figure out what works for YOU! If you can keep a notebook with info of what you are eating/medications and what is happening with your symptoms. You never know what ahhh ha moment you will have. My DH has a favorite saying, haven't we been around this mountain before,,,had I had a notebook maybe I would have been able to look back!! |
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Title: Re: New Member: Advice, Please? Post by Sandi on 02/22/11 at 17:27:02 I bet Dr Akin could most definitely refer you to someone where he was working in Michigan ! I would guess that He trained plenty of docs while he was there ! Also down in the recipe section I posted some recipes / brands I use, and also a list of food ideas for those with serious food issues. |
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Title: Re: New Member: Advice, Please? Post by nikweth on 02/23/11 at 00:01:28 Summer Your symptoms sound almost identical to mine. I struggled for 14 years. My allergist called it idiopathic anaphylaxis and she was right but could not really offer me any information about it. I went to Northwestern in Chicago and received the same dx. They didn't seem interested in offering me any info about it so my allergist finally sent me to Mayo in Jan and they dx MCAS (Dr. Rank). Both myself and my allergist were thrilled as I finally have a dx and she has something to learn around and a Dr. to work with. She is also connected to Dr. Akin so she is working with him to learn. Don't give up hope. Can you consult with Dr. Rank at Mayo since your already a patient there? |
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Title: Re: New Member: Advice, Please? Post by DeborahW, Founder on 02/23/11 at 00:54:23 Singulair only helps me whenever I take it (which is when I am flaring). I don't think that it is supposed to cause drowsiness, so I am not sure why you were given that advice. Either way, I have never seen anyone on the forum say that singulair affected them any way but positively. Since Dr. Weir suggested it, I would say go for it! Dr. Akin is the one who suggested and prescribed it for me. |
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Title: Re: New Member: Advice, Please? Post by summerfields on 02/23/11 at 03:18:04 Thanks to ALL of you for your suggestions, I appreciate it. I adjusted my "allergy pages" yesterday a bit and started a new notebook for Emergencies. I had titled them previously as "Known Allergies and Adverse Reactions", which was sort of a compromise on what they were, or were not, but as I learn, I renew my vocabulary. Thing is, I DO prove Ige allergic to many substances -- which doesn't matter, when I list them, the docs' eyes glaze over and I start to see the look of grave doubt. Sometimes I hear about it in very insulting words. From the time I had a terrible case of Mono at 18, I started testing positively allergic to nearly everything I was tested for. But whether they are "proven" or not, I am just too generally reactive, there's a War going on inside my body for whatever strange reason. I'm glad to hear feedback on Singulair, particularly since even Dr. Weiler had expressed concern over it causing depression, and there are the reports of violent personality changes, nightmares, and suicidal thoughts, like any of us need to add that to our piles of trials. I think I will, for now, consider keeping it for the worst times or approaching procedures. Which I have coming soon. I've been surprised to find articles on the net connecting many of my long-held "syndromes" to Mast Cell Disorder. I can't believe I didn't run into this "root" long ago. I've been struggling with all of these following syndromes / "mysterious maladies", some for decades. Sarcoidosis (began in 1999, presently in remission) Chronic Fatigue Syndrome (since 1985) Fibromyalgia (since 1985) Multiple Allergies / Chemical Sensitivity (Since 1971) Interstitial Cystitis (intermittent) TMJ (since 1980's) Chronic Diarrhea (since 1991) Heart & Blood Pressure Irregularities, syncope (since 1970's) Dizziness (since 1970's) Stomach Pain (since 1990's) Bone Pain (since 1980's) Flushing (since 1980's) Intolerance to Exercise, and Heat (since 1980's) Reactions to Medications, Dental Anesthesia, and Contrast Dye (since 1980's) Would someone kindly send me Dr. Akin's email address? :) |
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Title: Re: New Member: Advice, Please? Post by Josie on 02/23/11 at 04:26:43 Hi Summerfieds , Your blog name has good memories for me as its the mane of my local swimming baths and woods when i was a kid :-) You various mysterious maladies all fit for masto / mcas . What is TMJ ? How was your sarcoid diagnosed ? My docs considered this initially . But i didn't get better enough with steriods . i needed 60mg to be any better so they discounted it . I understand your concerns about singulair , all i can say is it has helped me enormously xxxxxxxxxxxxxxxxxxxxx I think my veiwpoint on meds comes from nursing ( 15yrs ) as I am mindful of side effects but see the treatment potential first . I asked about if you have had an epi pen , as previous safe use makes carciniod less likely . My pulse reaches 180 bpm in tachycardia . The EPI Pen is essensial for me in that it works , my pulse settles , my BP normalises and I feel better :-) Without it I progress to throat close and collapse . some of us shock , some of us leak mediators . Some of us do both . hugs Josie |
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Title: Re: New Member: Advice, Please? Post by DeborahW, Founder on 02/23/11 at 05:53:07 I'll send you his email in a PM. You really should eliminate that word, Allergies, from any of your information UNLESS you have had allergy tests that proved positive to those things. While it is easy to tell a restaurant waiter that you can't have any garlic because you are allergic (when in reality, you aren't allergic at all; you simply know it is a trigger for you), you don't want to tell a doctor that you are allergic to something because it will confuse them. Thos of us with mast cell disease are essentially NOT ALLERGIC to most things. I have 3 allergies: shellfish, mold, parsely. That is it. Yet, I am HIGHLY triggered by food. Most foods trigger me, but I am not allergic to them at all. So, be careful when using that term so as not to confuse your docs. |
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Title: Re: New Member: Advice, Please? Post by summerfields on 02/23/11 at 06:04:05 Hi Josie, TMJ = Temporomandibular Joint disorder -- Jaw. My jaw can sometimes get "stuck' closed, hard to open, pops loudly and painfully when I try, then doesn't close straight. It's not near as bad now as it used to be, though. I can't figure out why that's in the Mast Cell articles, but I've seen it mentioned a few places. I have a brand new Epi pen, but I've never used one yet. Since it is hard on the heart (Dr. Weiler, again, was a bit hesitant to give it to me), and I have a "fussy heart" (the way I think of it), I haven't yet felt it was time to use it when I get racing tachycardia with my reactions. I imagine that the racing heart is my body's way of keeping me alive after my BP plummets. I still have to learn about all that, and so am interested in everyone's experiences with it. I had Sarcoidosis building up for almost a year before it got so bad it finally proved itself. In it's moderate stage, I had seen a doctor about the building symptoms, and the doc told me I just had "Creeping Crud" -- his exact words. He told me to go home and take some aspirin. At that time I already had trouble walking from ankle pain, had little red spots on my skin, chronic dry cough, and my elbows hurt. One night my ankles swelled up big and red and felt like they were on fire, I was pretty much screaming, and couldn't stand up at all. By the time it peaked I had bright red blotches on the whites of my eyes (the eye doc helped diagnose it), my elbows and wrists felt so broken I couldn't turn a door knob or a faucet handle, I was in excruciating pain. At that point another doctor was wise enough to recognize it and diagnose it. Another rare disorder. I still get suspicious responses when I tell it to other docs -- the doctor who diagnosed it got reassigned to a hospital shortly after I started with him, and I have missed him. Prednisone helped me get all that under control and into remission after several months. Prednisone was miraculous, it worked quickly, but it sure caused a lot of trouble by itself, a textbook of side effects, and getting off of it was problematic -- the new doc took me off quickly (in a week), and he should have known better. |
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Title: Re: New Member: Advice, Please? Post by missmarple on 02/23/11 at 13:35:41 Hi - welcome summerfields and I hope you get some help. Message for JOAN - I react to a million things too and was interested in what you said about MALABSOROPTION. Could you explain more - how could I get a test for this? If I can't take drugs (I can't) how can i treat it? Thank you so much.... |
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Title: Re: New Member: Advice, Please? Post by Sandi on 02/23/11 at 17:19:13 Summerfields, I've never used my epi either, I've had times I should have, and am very lucky I survived. I like you have true severe allergies also, there are sulfites in the epi pen and thats one reason why I have chosen so far not to do it. The hospitals are now supposed to have a sulfite free version, which is not available for personal use, they cannot keep it stable w/o it for a preservative. Someone telling me I won't "react" to the epi truly means nothing to me, that same person would tell me I wouldn't "react" to a lot of things I do. Although your doc so far didn't believe Mast Cell disorder, you actually improving on some of these medications may actually change her mind! It's so hard to tell someone online you so get where they are coming from! I'd love to say begin one at a time or you will not know which ones are the bad or good ones, but when you are a mess it sure would be nice to get some symptoms under control wouldn't it! I also was disgusted/shocked that myself or any physician I had went to had never thought of Systemic masto. When I started to become chronically ill in the 80's ironically I flew to Boston to see a "big" allergist. Talk about irony! Then when the home computer came to town I began to research then google! holy cow! Still nowhere, well it finally hit me, I'd done a lot of doctor to doctoring before mastocytosis had even had it's first medical conference. by the time I'd searched the entire internet and given up was probably when the first information started to pop up online! I'd truly given up researching and just considered myself allergic to the world and did my best to manage. Then I became horribly worse again ( allergy desensitization triggered my body into almost total failure. By the time I'd figured it out and quit, I truly didn't think I was going to live. The treatments were triggering me, it didn't matter how much they diluted the serum I was getting worse and worse. Although you don't have the perfect doctor, she's prescribed you the medications that will help a mast cell disorder and thats all you need to get started. I truly hope you get some instant releif with your new medications just to get that ahhhhh haaaaaaa I've got you moment to your body! It is so frustrating to have a body that sees the entire world as the enemy isn't it! ANything you breathe, drink, eat, put on your skin, geeze even my eyes are hyper allergic! Here I go late night babbling, what were we all talking about :) |
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Title: Re: New Member: Advice, Please? Post by Josie on 02/24/11 at 07:30:55 Hi Summerfields , please understand I am not trying persuade you or dissuade you in any subject . I am just giving you my experience to work with evrything you ahve heard :-) As , as adults it is our job to make decisons based on the knowledge we have I am triggered by many foods 5 page list , typed , enviriomental triggers , emotional stress, the works . I also ahve had docs who have not beleived my angiodeama status , putting me at risk . There is too much for me to put here :-) Inhaled sulphite gasses , in alcohol or in sugar will cause anaphylaxis in me . So I completly understand your concerns about triggering :-) I am sulphite triggered as sandi mentions . So I held off the epi pen .I spoke to the cpmpanies and my pharmacist assesed my anaphylaxis risk against sulphite risk . They found my anaphylaxis risk to be higher as sulphites , when in the body , quickly bond with oxygen to become sulphate - a harmless substance , even to me (I can't say for eveyone as I don't know ) . So for me , with my anaphylaxis going to full symptoms , as circulatory collapse - from low bp , tachylardia and eventually low BP that your body can not compensate for is my reality :-) . Everyone has a stage called compensatory shock :- This is what I wrote about shock in a book I am writing about my experiences . Shock I thought I should take a moment to explain shock . Shock can originate in several places . 1. From infection - causing blood vessel to get porous , from bacteria toxins . As a result fluid moves out of blood into tissues . septic , 2. from fluid loss - blood or lymph - bleeding , anaphylaxis hypovolemic , 3. due to poor heart function - causing blood pressure to drop cardiogenic 4. Due to trauma to nervous system - Stroke , spinal injury - Neurogenic 5. Emotional :- emotions trigger nerve responses which cause symptoms . Shock has 2 stages :- compensated and complete In compensated shock the body has had an assault / loss of fluid / heart not working / kidney failure . It responds by using its resources to compensate :- Temp up - to encourage innate immunity to step into action blood pressure up - to push blood at edges into central space to perfuse organs Heart rate up - to push what fluid is present to the internal organs Flushing - in response to temp / bloods pressure Breathing fast to make blood more alkaline as infection and fluid loss and muscles working without oxygen makes blood acid and this stops vital actions of proteins ( enzymes ) vital for daily function This can continue for an indeterminate amount of time . This is dependant on :- rate of fluid loss , physical fitness . After a period of time the body exhausts its resources and this the leads to :- Temp down - hypothermia In response - blood sugar down as stores in liver can not be accessed by the body when cold Low blood pressure - due to limited circulating volume Giving - Blue edges , feet / legs Central blueness ( cyanosis ) face , lips , tongue . Low pulse / cardiac arrest - due to heart muscle not getting enough blood Confusion / unconsciousness If not rectified - death So Histamine , compliment and other triggers can cause the process of fluid movement from the blood to the tissues - which the body sees as lost fluid . It also opens blood vessels , lowering blood pressure The first aid is always symptom based until the cause is identified . Then the treatment for that is a priority . Medical teams are well versed in the management for shock . For Anaphylaxis this is :- EPI PEN - to reduce swelling in airway and lungs and stop fluid leaving blood , bring blood pressure up, increase pulse Into vein :- Anti histamines - to stop actions of histamine - piriton , ranitidine Into vein - high dose steroids - 200 mg - reduces swelling , opens airways Breathing - oxygen - keep oxygen high for central organs and brain Breathing - nebulisers - drugs in liquid , breathed in - stops wheeze , opens airways Fast fluids - to replace fluid moved to tissues as when it has it is lost from the circulation. I seem to know when I am in well and a reaction is going to make me very poorly xxxxxxxx I passed out 3 times bacause I didn't think I " needed " an epi pen . When i realised it was late , luckily the action of the pen bought me round . I also understand the concern with the heart . I have had nearly 40 adult doses of adernaline now and I was seen by a cardiologist . My heart is fine . They reassured me that adrenaline does a job , and then its processed out of your system , in 6 hours total . It does not go on causing tachycardia etc . if you have that it is residual histamine , prostogandin effects . I also felt i could " control " my reactions and " decide " when to ahve it . It was my way of controling my life in some small way when I felt like I had nothing left , no job , car , money , my kids were scared of it all . But as I said I learnt my lesson . If its not a biggie I will orally medicate . but big reactions , means Epi pen for me . I am a staff nurse and I was petrified the first time I had to give myself it . But it was ok . My need to breathe and not collapse was bigger than my fear xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx If I take it when I know I need to , it often works before I have full throat close :-) I may need more and other meds . But it gives me time to get an ambulance to me . :-) I am not saying you are feeling any of this . I just thought I would share my perspective . With meds , singulair and ranitidine in particular I am doing better and shocking less . I hope you have contact with DR Akin soon :-) hugs Jose |
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Title: Re: New Member: Advice, Please? Post by summerfields on 02/24/11 at 08:03:54 Thank you, I take everything respectfully into consideration. It's a wonder that most folks walk around relatively well, isn't it? Our bodies are incredible machines. I wrote an email to Dr. Akin this morning, and I've been researching Dr. Castells' articles, too. |
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Title: Re: New Member: Advice, Please? Post by Starflower on 02/24/11 at 10:08:18 I just want to add an important note to Josie's post... Josie accurately described how the body shuts down in a "shock" situation (thanks Josie!). The important thing to recognize, however, is that not all anaphylaxis leads to shock... that's only severe anaphylaxis. This results from one of two things: 1. Angioedema of the airway 2. Loss of blood pressure, resulting in cardiovascular collapse Severe anaphylaxis is definitely a life-threatening situation! I think it's a bit unfortunate that we use the terms "shockers" and "leakers"... it might give reassurance to "leakers" that they're not in danger of going into anaphylaxis under ordinary conditions, but it might also give the impression that "shockers" are constantly going into life-threatening shock. Not true!! I've been in anaphylaxis dozens of times... I've even been to the ER twice... but my reactions have never been so severe that I went into true "shock." It's very important to understand that there are MANY gray areas between "fine" and "life-threatening shock." :) Heather |
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Title: Re: New Member: Advice, Please? Post by Riverwn on 02/24/11 at 10:14:10 The great thing is, we are waiting for the Masto Docs and WHO to publish the new definitions of types of shock they revised very recently. It will be such a help especially for ER settings when they dont realize there are so many different types of shock that are still truly anaphylaxis... What it all starts and ends with, with us is,, angry little mast cells misbehaving and degranulating, creates reactions, ups the reactions strength and we find ourself in shock,.. hey Kinda like the knee bone is connected to the leg bone, the leg bone is connected to...,well you know what I mean hehe... Enough for my small pea brain mind for day LOL.. its such a joy to have you here! I love it when people make me stop and think and even teach me new things... HUGE hugs for you, Ramona |
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Title: Re: New Member: Advice, Please? Post by Josie on 02/24/11 at 11:43:22 Hi Heather , I completely understand . I too do various versions on a theme , I have had well over 150 reactions , about 20 % are Epi level , all are anaphylaxis - only 20 % anaphlactic shock . I think it helps to see the fire in full to be able to learn what our bodies do but ultimately we have to give it the respect of fire and not take chances guessing :-) Regardless of how we are treated sometimes paramedics and docs would rather us Epi'd and well than not Epi'd and very sick / dead . I use everything available , not just drugs to help me stay well xxxxx But sometimes I just need the big guns for a big problem that all my other tricks have not worked on :-) Sometimes we need supermen dumping water in the fire not just a bucket of water to put the fire out xxxxxxxxxxxxxxxxxxxxxxxxxxxxx Much love and respect to all :-) Josie |
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Title: Re: New Member: Advice, Please? Post by summerfields on 02/24/11 at 15:20:43 Well, the doctor from Mayo called me this evening and said that my 24-hour urine test proved that I DO, indeed, have Mast Cell Activation Disorder. She had not expected it, but it's diagnosed for me now -- one hurdle over. I forgot to ask her if she intends for me to continue with the Zyzal / Singulair, Pepsid Rx's, but I presume so, surely. She said she wants me to find a local allergist who can start desensitizing me in a hospital setting for Aspirin, and that will be my route, to see if it will help. Something about Prostaglandins -- you'll all understand that better than I. I have run into Aspirin treatment on the net, but didn't spend any time looking at it, because I react to Aspirin badly enough that I never wanted to take it again. So I'll be adding that research to my studies. It'll be interesting to see what happens with that. I'll look around in here and see if you have discussed this before. |
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Title: Re: New Member: Advice, Please? Post by Kim on 02/24/11 at 16:18:06 You have a diagnosis!!!! That is so wonderful! Although this is not a diagnosis we want... in the same sense you now know that you FINALLY have an answer and can grasp the reality of it, educate yourself to the fullest and learn the best ways to deal with it and give yourself the best quality of life... It is often the "unknown" that is so terrifying. You can at least stop searching for that "answer" now. ::) I wish I was better educated myself so that I could help you with the aspirin issue. If you already have reactions to aspirin that is concerning to me. They are talking about maybe putting Brie on aspirin to decrease the Prostaglandin release. There is some information on this on this forum and if you google it there is even more. I have done this since they talked of maybe starting Brie on it. I wish I had some of those links... but I did not save them :-/ But I know that Deb, Heather, Lisa and Ramona and others will come to your rescue! I am happy that you can now sit back and celebrate having a definitive answer and move forward.... Stay Well, Kim |
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Title: Re: New Member: Advice, Please? Post by Riverwn on 02/25/11 at 09:33:36 Hi Summer! I am soo glad you finally have that diagnosis! You are just beginning to piece this whole puzzle out... the first step is what do you think you have, the next and most important is testing for exclusion to know the definite truth and having that REAL answer... the next is making a game plan to keep those masties quiet and well behaved.. then for me, its about weighing how to revamp how I live my life to be more at balance with my limitations and keep a positive attitude. :) I would caution anyone thinking about desensitising to allergens to be very careful about this--and make sure it is done with your masto Drs approval...some people can do it just fine, others react bigtime.. be careful and safe :) PS never go off your meds for allergy testing. A doctor who asks that doesnt understand mast cell diseases, we stay on our meds!! Hugs, Ramona |
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Title: Re: New Member: Advice, Please? Post by DeborahW, Founder on 02/25/11 at 14:53:17 Hmm. Not sure if the aspirin therapy helps or hurts mast cell people. Anyone know??? The real treatment would be getting you on better meds. Pepsid is like baby food to us. Mast cell people take Zantac instead, as well as other meds..... I think you should find a Masto doc who is better known and who will be more knowledgeable about the correct remedies. |
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Title: Re: New Member: Advice, Please? Post by Joan on 02/25/11 at 19:32:48 Dr. Butterfield, at Mayo in MN, has done a lot of research and has had some success in masto patients using aspirin. But, I don't think that changed the fact that some people can't tolerate salicylates or aspirin, which contains salicylates. Hope you'll proceed very, very cautiously if you decide to go ahead and do the desensitization. There is a quick desensitization that is done in the hospital, but I haven't heard whether it can be done on mast cell patients. I do know that very few allergists will even give immunotherapy to people with mast cell problems. Mine only agreed after I told him I had already been taking shots for 15 years when I was undiagnosed. It couldn't hurt to get in touch with Dr. Akin or Castells about how safe the process would be for you. |
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Title: Re: New Member: Advice, Please? Post by summerfields on 02/26/11 at 02:37:31 I agree with the cautionary advice. I did some research on the aspirin desensitization process -- since I quit aspirin years ago due to anaphylactic symptoms -- and absolutely, what I read scares me very much. The one write-up had the patient in intensive care for five days and involved shock after shock after shock, and I just don't think my poor body can bear that kind of abuse. I'd hesitate to sign that form saying I understand the process could kill me. My stomach ulcer situation is only another red flag. Quote:
I have the one email in to Dr. Akin but haven't heard anything back yet -- that was before I even heard I should do the aspirin routine. I have read about Dr. Castells doing it, but she knows how, and that would be worrisome enough. The allergist that I would be doing it with here in town, admittedly knows nothing about MCAD, or the aspirin desensitization process, she would be reading instructions from the Mayo doc, in a hospital here that has probably never seen such a thing. In fact, it would be the same hospital where I woke up from surgery listening to the recovery room nurse laugh at my "ridiculous list of allergies". Quote:
Thank you, I had wondered about that. Once again, a questionable approach. Quote:
I was positive I at least had the MCAD, and I still suspect that I might prove "Systemic", if I had the right tests done at the right time, but it wouldn't make any practical difference in treatment, would it? Quote:
I agree. This doctor was wrong about so many things, I don't feel at ease putting my life in her hands. And then, she hadn't explained anything even when she called me with the diagnosis, she just told me we'd try aspirin, and said to come back in "six months or a year" and see how I'm doing. Too much serious going on, to simply be told that. There needs to be more sincere help to be offered than that. I've done more reading here as I've had the chance. You're all so brave, and smart, struggling on with this illness that leaves you between rocks and hard places. I think you all deserve an award. :) |
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Title: Re: New Member: Advice, Please? Post by Lisa on 02/26/11 at 14:22:42 Hi Summer! I'm sorry I've not had a chance to chime in here recently, my sister is visiting and I'm really overloaded and stretched to my limit so I'm going to have to try to pop back in here perhaps tomorrow afternoon. I did want to say, however, that I'm glad that finally the torture is over in that you know what you are working with at least! My doctor, once she saw the high histamines result told me "Lisa, for me I don't need to see anything else, I know what you have!" and from that point on she treated me as a masto patient. There's nothing else which will send the urine histamines up quite so high as that of a mast cell disorder even though other diseases do have histamine release involved. This is why it's not diagnostic, but it is considered an indicator of mast cell activation so having at least this the doctors know for sure it's masto. So, good for you, Summer, your major torture is over!! Now, getting the rest of the answers is the challenge, but if you keep on pushing after these you will eventually find them!! I'll talk a bit more tomorrow, got to crash now! Hugs! Lisa |
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Title: Re: New Member: Advice, Please? Post by summerfields on 03/04/11 at 06:10:50 A follow-up on my story... You'll remember that my Mayo doctor called several days after I had seen her -- and she had been very skeptical of my symptoms being anything more than anxiety -- and told me that my prosteglandins had indeed proved me a diagnosis for MCAD. I just received her written notes in the mail, and I'm distressed over them. That happens a lot when I read what doctors write about me. I had needed professional support and verification to take to my local doctor, and anyone else I will encounter with my emergencies, and she has written up her notes completely trivializing my whole situation. She wrote that even though I do prove to have this disorder, she does not know why I have the reactions I do (they are dangerous anaphylactic reactions to foods and drugs, by all my readings and according to former allergists); she wrote that my listed symptoms are not in line with anaphylactic symptoms or MCAD or allergies. And she wrote that I only have one allergy, to peaches -- when I took in papers proving many of my actual tested allergies. According to her report, my having MCAD is neither here nor there, indicative of nothing related to my history of complaints (that read like a Mastocytosis article). She emphasized that she told me it may all be anxiety. So I still feel completely unsupported, I can't take that to anyone and be believed. She was a nice enough lady, personally, but for this need, she has really let me down, and acts as though she's never read the literature. She still insists that my (reported) rushes of cardio-vascular symptoms, that take place while eating or having ingested a drug, have nothing to do with mast cells. I'm just venting this morning. :-[ I haven't heard back from my email to Dr. Akin, but I've had some computer issues this week. |
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Title: Re: New Member: Advice, Please? Post by Josie on 03/04/11 at 09:06:05 Hi Summerfields, Oh babe I undersatnd .I fully expect some of my notes would say the same about me . I had one admission where they were told to watch me medicate :-( . They thought I was over using my epi through anxiety . grrrrrrrrrrrr, Many doctors , despite documented symptoms , are they wont beleive it until they see it Hold on , you know the truth , you ahve your proof of allergies and reactions . My reaction to CT contrast was seen . It was actually a freind who gave me it .( CT radiologist ) In the days post they held my epi pens at the nurses station and this scared me . I had to ask my firned how I was immediately , 3 mins after drug . she said that I had been struggling big time . I knew and I know my body but in that moment I needed reassurance . Silly given ITU had been with me for 5 hrs the previous evening ( ITU outreach and anethatist ) . I compleltly understand your concern and dismay at her lack of insight xxxxxxxxxxxxx and her lack of understanding on what this means to you . I don't know if you can ring Dr akin to check he got your email xxxxxxxxxxxxxx I had a thought . I was talking to my docs about diagnosis first , so they thought I was anxious and focusing on a holy grail . Then I changed things . I started talking about my aim , which is stability regardless of my label . This ahs gained me better responses and even the doc on tuesday , by the end of our meeting , was going to look at my questions . My label brings people believeing and i know completely how important being believed is to you / us . I had to explain to my doc tuesday that I needed a diagnosis , to be believed to help me my experiences with other doctors / nurses . In that i have had some impasses with docs and nurses who can't cope with me not fitting a box . Do you ever stay home and manage reactions ?? Another approach is to prove your point . I have ordered my 999 calls and paramedic paperwork . i dont know if you can do the same . xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx She seems to be a no hypotension , no anaphylaxis doctor . My reactions - anaphylaxis - is abdominal and airway . My BP will drop but my body compensates with very high blood pressure . My airway normally goes before my BP bottoms out . Though it has on 3 occasions . I passed out , but this was at home whilst I was on the phone , hence why my 999 (911) calls are important for me . The other option is present with every swelling . Then the paperwork will show "it" . Photos have helped me immensly xxxxxxxxxxxx I would respond to the inconsistasies in the letter and challenge them , so the fcats are documented regardless of her opinion :-) I have had to do this . In the meantime could you ask your primary for a work up for autoimmune causes , pheaoctycythoma and carciniod as these things need excluding and the first magnifies existing problems and a pheao will give adrenaline release , which will make your pulse race , with no food connection . carciniod has a collection of food and drug intolerences similar to masto / mcas . carciniod has various hormones relased - histamine , adrenaline ,seratonin. + many others . It would be these chemicals thatgive you problems . A pheao , is on the adrenals and realses adrenaline , and various other hormones in a similar way to a carciniod . Until you have a diagnosis , at presant you have IGE allergies and a collection of undiagnosed symptoms :-) The anaphylaxis you have to triggers mean that a diagnosis of idiopathic anaphylaxis would be likely . This is the old title for mcas .Which is still being honed down in terms of diagnostic criteria . www.allergyclinic.co.nz/guides/56.html - has a list of things that need excluding , after carciniod , pheao and autoimmune conditions . It also has that currently accepted diagnostic criteria . It is interesting to note you don't have to have hypotension to have IA . When i was in your siuation I made a list of the things that needed excluding and got tested for them all . you may have to go to different doctors for their speciality if your primary looks confussed . Autoimmune - endocrinology thyrod - T3 T4 and autoimmune antibodies - hashimotos thyroidosis adrenal - adreanl antibodies for primary addisions Lupus - ANA , compliments Pheaoctrocythoma - Urology or endocrinology 24 hour urine collection for Cateclamines - andrenaline and nor adrenaline Carciniod 24 hour urine collection for 511HA - seratonin derivative Bloods - chromotaogranin a Immuno Heridatory angiodeama compliments - c1 c3 c4 I also got tested for :- myesthenia gravis IGG condition ,because my airway was so bad Myloma - bone cancer which can cause increased IGE or any of the other immunglobulins - IGG , IGA , IGD , because I had back pain as an early symptom and high IGE with no obvious IGE allergy , even on testing Infection :- hepititis , HIV , ( pure caution as i had been tested 4 months earlier for a health care job ) Endocarditis - sweats and shortness of breath on exertion All negative I hope this helps :-) Josie Please dont lose faith xxxxxxx many hugs Jose xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx |
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Title: Re: New Member: Advice, Please? Post by Riverwn on 03/05/11 at 05:04:42 Hi Summer :) Josie has some great advice here... I hope you hear from Dr Akins or Castells soon.. in the meantime, do NOT trust your life to a Doctor who cant be bothered to read the lastest research on your case or diagnosis.. I would have a few words to describe that--that I wont use here LOL... Gather copies of ALL your labs and info like Josie said. You are going to have to be your own expert until you get in to see one. NO epi until they rule out Carcinoid.. if you have already had it, then we know it isnt Carcinoid-it would have thrown you into a heart attack. The odds for Carcinoid are very low--but serious enough it HAS to be ruled out. Heather has a list of testing the should be done while waiting for an expert---You can have that doc order those and cover your bases there.. Like baseline Tryptase levels...remember those levels naturally fluctuate every few hours, so having more than one level done can never hurt--especially it must be done within 3 hours of a shock episode. Mine so far have been 9, 10, 18, 43 see the huge differences?? Im waiting on the results of 3 more. Stay on your meds and remember it isnt in your head. Its just that the knowledge ISNT in your docs head LOL.. We're here for you, dont get discouraged. HUGS, Ramona |
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