Mast Cell Disorders Forum | |
http://mastcelldisorders.wallack.us/yabb/YaBB.pl
General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> General Masto Symptoms http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1294101674 Message started by Lisa on 01/03/11 at 12:41:12 |
Title: General Masto Symptoms Post by Lisa on 01/03/11 at 12:41:12 Archived from Original Forum - sharon-nc author The www.tmsforacure.org lists the following symptoms as symptoms of mastocytosis – I don’t have spleen involvement or osteoporosis yet. All the others, got it. • Abdominal pain• Hives & other rashes • Anaphylaxis • Inflammation of the esophagus • Blood pressure changes & shock• Intestinal cramping and bloating • Bone pain (mild to severe/debilitating)• Itching, with and without rashes • Chest pain• Liver, spleen and other organ involvement • Cognitive difficulties/brain fog• Malabsorption • Degenerative disc disease• Migraine headaches • Diarrhea• Muscle pain • Dizziness/vertigo/lightheadedness• Nausea • Faintness• Osteoporosis/ Osteopenia • Fatigue• Peripheral neuropathy and paresthesias • Flushing• Rapid heart rate • Gastroesophageal reflux• Vomiting • Hematological abnormalities Right now my body seems most focused on tremors and fainting, though I did have a shock just a few weeks ago. There are periods where some things won’t flair or will be in good control or maybe just able to ignore. Ignoring is never a good idea when it comes to masto, I can speak to this as I do sometimes think, if I ignore it, it will go away, so far that has not happened even once. I am very lucky in that fatigue generally is not a big issue for me, probably that is the mildest one – with the exception of when everything just kicks in gear and the shocking starts and all the other symptoms jump in the party at the same time, then I have some fatigue. Sharon in NC |
Title: Re: General Masto Symptoms Post by Lisa on 01/03/11 at 12:43:52 Archived from Original Forum - laureen author Hello. I feel kind of funny posting here because I don't know if I have this or not. I have the following symptoms and I feel like a hypochondriac because I am complaining all the time: * Abdominal pain • Hives & other rashes • Inflammation of the esophagus (Reflux) * Intestinal cramping and bloating • Bone pain (mild) * Itching, with and without rashes • Chest pain • Cognitive difficulties/brain fog• Malabsorption • Muscle pain • Dizziness/lightheadedness • Fatigue • Rapid heart rate (sometime) * Hematological abnormalities (I was diagnosed with ITP which is a low platelet count for no reason. They think its auto-immune, but I don't have the antibodies). So, they don't know why. * Dermographism I have been feeling lousy for years now and it's taking it's toll. The biggest thing is that I am itchy all the time. I figured out on my own that if I took Zyrtec everyday, I wouldn't itch as much. My PCP told me she believes I have "something histamine" related because the zyrtec works. She ran a food allergy panel and it came back normal. We kind of gave up there. I don't know if I have this, I have not had any severe allergic reaction. But, it is the closest thing I can find in regards to all my symptoms. Question for all of you- who should I see- my hematologist or my PCP for testing? |
Title: Re: General Masto Symptoms Post by Lisa on 01/03/11 at 12:45:10 Archived from Original Forum - deborahw author Hi Laureen, Welcome and this is definitely the right place for you to start on figuring out what is wrong. We have all been in the same boat, trust me! It is difficult for docs to diagnose masto. Often we get clinically diagnosed because we test negative to everything else. The only definitive test is teh bone marrow biopsy, and you don't want to have that doen just anywhere due to possible false results. Do you mind sharing what state you live in? I ask, because the quickest way to get to the bottom of this mystery is to go see one of the mast cell specialists. (My personal favorite is Dr. Cem Akin at Univ of Michigan.) If you absolutely don't want to see one, then you need to go to an ALLERGIST. The mast cell diseases are not blood diseases. They are indeed related to histamine (that we know for sure, maybe other things that are still being researched). Thus an allergist is the way to begin in my opinion. I guess that I don't have much confidence in any doc, though, unless he is one of the masto specialists. You can't believe how quickly I got better after my first visit to Dr. Akin after having been undiagnosed for 10 years with other doctors!! I would say that your symptoms certainly sound like some form of mast cell disease. One tip for you: I was always really itchy, and Dr. Akin had me taking zyrtec, allegra, and zantac. The itchiness continued and we added Singulaire, and that got rid of the itchiness! If you are only taking zyrtec right now, you are extremely undermedicated for mast cell disease. The zantac really helps get rid of the GI problems, and the allegra and zyrtec really help with the othery symptoms. There are many more meds as well, as each patient responds differently and it is necessary to determine what best helps YOU. Anyway, if I know what state you live in, I can tell you who the closest mast cell researcher/specialist is to you. In the meantime, please read over the forum and hopefully you will find some good info to help you. |
Title: Re: General Masto Symptoms Post by Lisa on 01/03/11 at 12:46:53 Archived from Original Forum - laureen author Deborah, Thank you so much for your quick response!!! I have a prescription also for Nexium which I have been taking on and off for years. I get discouraged taking a lot of "maintenance" drugs so I try as much as possible to control the acid reflux on my own. Sometimes the reflux doesn't occur for weeks and I think I am doing great and then suddenly it returns. Does it matter if I take Zantac or Nexium? I live in Pittsburgh, PA. I have zero confidence in my allergist and so I would rather find a new one than see the one I have seen last. My PCP would not write me a prescription for Singulair b/c she said it wouldn't be covered under my insurance b/c I don't have asthma. Another question...I do not have the flushing/fainting symptoms. I get lightheaded sometimes, but I don't feel faint. Could that mean that I do not have this? I am willing to suffer through the bone marrow test if it finally gives me some answers. But, at the same point, if it is highely unlikely that I have this...then I don't. Does this make sense? :) |
Title: Re: General Masto Symptoms Post by Lisa on 01/03/11 at 12:47:57 Archived from Original Forum - laureen author Oh...and in regards to the specialist...it looks like Michigan would be the closest for me? I would be willing to travel there, but would like to be a little confidence in knowing whether this is what I have first. Would they be able to do testing here first on things like blood, etc...before going there for the 1st time? |
Title: Re: General Masto Symptoms Post by Lisa on 01/03/11 at 12:50:19 Archived from Original Forum - deborahw author Hi. Everyone has different symptoms. Some of us are true anaphylactic shockers; others are not shockers at all. Mastocytosis is a disease in which either has too many mast cells or they have a normal number, but they are mutated. Ultimately, the mast cells are too sensitive and are thus degranulating (releasing histamines) too easily, which causes a variety of symptoms, some annoying, some debillitating, some life threatening. Some of us have completely normal mast cells and a normal number of mast cells (which described me), yet we have mast cells that are too sensitive so we get the same symptoms as masto people. We are the mast cell disease people (my doc calls it Idiopathic Anaphylaxis; some docs call it mast cell activation disorder). I shock, but many on this forum don't shock. So, bottom line is that even if you don't have the flushing or fainting, it doesn't signify anything. Your other symptoms could be indicative of a mast cell disease, which is the reason to get to a "real" masto doc. If it were me, I would see either Dr. Cem Akin at Univ of Michigan(my doc, but I am in Indianapolis) or Dr. Maria Castells in Boston. I googled her and found this for her contact info: 850 Boylston St Brigham & Women's Hospital AIM Suite 540 Chestnut Hill, MA 02467 Dr. Castells is closer to you, so that is who I would recommend for you. Her patients say that she is super nice and she is one of the leading researchers (along with Dr. Akin) on mast cell diseases. She is a big proponent of mast cell activation disorder, so that may be perfect for you if you have that rather than masto. Like you, I have always been anti-medicine and never wanted to take any. I learned, though, that by taking histamine blockers as preventative rather than as treatment, my life improved 100% and I could live more normally and enjoy life again. So, for now, I take 4 pills a day of different meds. As I continue to avoid triggers, I am slowly weaning myself from cetain meds. For example, I used to take 5 pills a day, and a couple months ago, I stopped taking singulair. I am maybe a tad bit itchier than before, but I don't mind. My next goal is to reduce the zantac, but I don't know if that is possible. You asked if zantac or nexium make a difference. I imagine that it does, as the masto docs prescribe zantac to us. Just to give you an idea, I take 300 mg of zantac in the morning and 300 mg in the evening. Some people take way more than that! I would like to wean down on that, but my most dangerous symptoms are GI ones, so I don't know if that is possible. By the way, your doc was being a fool in regard to his reason for not giving you singulair. I don't have asthma, and yet I easily got it filled and covered by insurance. (And in my opinion, my insurance company, Anthem , tried to deny as much as they can!)So, if Anthem covered it without any asthma health reason, I bet all of them do. |
Title: Re: General Masto Symptoms Post by Lisa on 01/03/11 at 13:50:53 Archived from Original Forum - deborahw author Hi again, I just saw your 2nd question. Wherever you go, Michigan or Boston, you are in control of what tests they do. It might be faster to get an appointment with Dr. Akin; I can't say, but I know he is easy to get into. Generally, you email him with a lot of details as to why you believe that you have masto (don't be wishy washy or you won't get an appointment; tell him the facts). Then he will give you a phone number to call to make an appointment. You can either go for a consultation, in which he will try to diagnose you clinically and more than likely put you on some mediciations to see if you improve. He likes to get answers quickly, so he will suggest that you get a BMB when you come. You don't have to, though, as that only tells him if you have masto. If your bmb is negative but you have the symptoms, you can still have MCAD. He will still treat you without the BMB. That is what I did at first. I went up for only a consultation. He put me on meds, and I got way better. A year later, I decided to get the BMB to know for sure if I have masto. He didn't pressure me to get it, yet he still treated me and helped me get better. So, yes, go see a masto specialist even if you aren't sure you have it. Otherwise, you can waste years of your life not feeling well, and you can't get those years back. I know...I wasted 10 years of my life. It wasn't my fault, because no one ever suggested mast cell disease to me and I had never heard of it. I just had the bad luck of never meeting anyone who told me about it until 10 years after I first became ill. My life wasn't a throw away during those 10 years, but it could have been a lot more enjoyable if I had felt well and not been afraid that I couldn't do things for fear of getting sick enough to go to the ER. Moral of the story: go to a masto researcher. :) |
Title: Re: General Masto Symptoms Post by Lisa on 01/03/11 at 13:52:44 Archived from Original Forum - laureen author Deborah, Thank You...Thank You...and Thank You. :) I emailed Dr. Akin, I think Michigan is closer than Boston (although I have a lot of family I could visit with in Boston). For the last several years, I have been going crazy and thinking all of this was in my head. I have been to the ER twice this year- once because of chest pain and once for abdominal pain. No diagnosis, just a confirmation that I wasn't having a heart attack. And, off to another specialist on the ab pain who said I have endometriosis and need a hysterectomy. While in the ER for the ab pain I had severe itching all around my belly button and it was turning into red/brown bumps. The Drs said it was an allergy to my clothing, but my belly button section of my stomach is itchy almost daily. I also had my gallbladder out and it was severely infected and had adhesions, but nobody bothered to try to figure out why. My platelet count is dropping every year, but the Dr.s don't care or worry since it isn't life threatening. Again, they don't try to figure out "why". My husband is at a loss and doesn't know what to say or think anymore. He wants me to keep going to the Drs. but I have sworn them all off for the rest of the year at least. I cannot tell you how many times I go in and out and get excited that whatever test they will run will finally tell me what is wrong. I sit here scratching my skin like a crazy person, it's sooooo frustrating. You are so kind and thank you for taking time to help me through this and answer any questions. BTW- I only found out about Mastocytosis by watching "Mystery Diagnosis" on Discovery Medical chanel. When they talked about the symptoms - a lightbulb went off and I googled it. I have been watching that show waiting for someone to have similar symptoms. I will keep you posted on what I find out - thanks again! |
Title: Re: General Masto Symptoms Post by Lisa on 01/03/11 at 13:53:56 Archived from Original Forum - deborahw author It makes me really happy to know that I might be able to point you in the right direction. Someone did that for me years ago, and it changed my life. Don't forget to keep a diary of how you feel, what you did that day, what you ate, etc, and that will help you figure out your triggers so that you can avoid them. Hopefully, your husband will learn with you and be that one person who truly understands what is going to trigger you and how you are feeling. Some of my relatives just don't get it, but my husband does! Let us know if you get that doctor's appointment with Dr. Akin! |
Title: Re: General Masto Symptoms Post by Lisa on 01/03/11 at 13:55:22 Archived from Original Forum - Laureen author Funny you should mention my husband. He told me if they find out this is what I have, he promises to learn how to pronounce it! He is very supportive and that helps. |
Title: Re: General Masto Symptoms Post by Lisa on 01/03/11 at 13:56:28 Archived from Original Forum - Laureen author Hi again. I was wondering how long it usually takes to get an email response? I only emailed him friday, but not sure how long I should wait before trying again. Thanks again |
Title: Re: General Masto Symptoms Post by Lisa on 01/03/11 at 13:58:07 Archived from Original Forum - deborahw author Hi. I wonder what email address you used? I will private message you his address. Compare it and see if it is what you have. Generally he responds day of or day after. If you haven't heard by now, I would forward the message again. Every now and then he misses a message. He has missed one of mine to him before. To check your private messages, look at the top of your screen and you will see on the top right the messages link. Click on it to get my message. |
Title: Re: General Masto Symptoms Post by Lisa on 01/03/11 at 14:10:16 Archived from Original Forum - nanciswell author I do not suffer anaphylaxis.. I suffer from incapacitating digestive problems..I have resigned to the fact that if I am having a reaction I need to go to bed, relax as much as possible and spend at least an hour of intense relaxation as my muscles get very tight and extremely fatigued which stresses me out and sends me into panic mode..,The relaxation/ simple stretching helps me to gain confidence again in being on my feet again.... It took me 33 years to figure out that I was reacting to practically everything in my environment. It was a bit of denial as well, as I knew I was reactive to my environment but could not face that I am THAT reactive.. and had to be so restrictive.. I have spent alot of time in doing body/ mind work to be able to relax enough so to shorten my severe reaction. I will get the following symptoms.. Feelings of euphoria, manic followed by depression hours later.. I find this symptom was the hardest to come to terms with.. It was hard to become aware enough of when I am manic , but now as soon as I start to feel a bit better after eating I know I need to go into my relaxation mode. It was hard not to be happy I was feeling so well and energized as opposed to my usual fatigue.. It was hard not to use this excess energy and become a :" normal" person. I am now more content to be a sickly person and I am finding the going to bed thing is the best way to deal with it all.. as at the end of the high comes the severe low .. and that is horrible.. Then my muscles will start to tighten up.. Leading to difficulty walking, difficulty holding a pen, and what is called myoclonus episodes where my whole body all of a sudden jerks.. Feels like an electric bolt has hit me.. My body jerks.. the worst was when my shoulder will pop as the muscle jerks.. Dizzy.. . Flushing/ sweats... this is not a constant reaction.. something new this week and I theorise based on my health knowledge is adrenal related>>??.. With hyperventilation and small amount of heart palpitation.. verging on a panic attack kind of thing.. Constipation... When I first went off my bad foods I had no constipation and this after 33 years of bad constipation.. When I was constipated I would feel very feverish and maybe nausea worse. I unforunately started taking something with the chemical called propylene glycol in it.. I was putting it on my skin ,, After on it for a month .. I got very illl with it.. And with that the constipation came back to last for another 10 months .. until I did some frequent dose chelating and it has improved a nice smidget.... Breathing chemicals such as perfumes, tobacco smoke used to give me nasal drip.. Feeling of hunger.. ie hypoglycemic reaction I forgot to add in the burping.. I do find if I purposefully burp some symptoms are not so bad.. like the dizziness .. |
Title: Re: General Masto Symptoms Post by Lisa on 01/03/11 at 14:12:06 Archived from Original Forum - starflower author Hi Nancy, You could do a baseline tryptase (a blood test) to help rule systemic mastocytosis in or out. It's not uncommon for people with SM to be "leakers" instead of "shockers" (having daily symptoms, but not anaphylaxis). At the same time, I would recommend seeing a GP to run some basic tests like a CBC, CMP, thyroid levels, and ANA with reflex. Many neoplastic and autoimmune disorders can cause the symptoms you mentioned without causing anaphylaxis. But personally... if I were in your shoes... I would focus on the neurological symptoms. CNS disturbances like myoclonus and difficulty walking are serious, but they don't say "mast cell disorder" to me. Although it's VERY important to educate yourself as much as possible... you really do need tests run by medical doctors to establish a diagnosis and treatment plan! Even if you've had bad experiences in the past :( A lot can change in 10 years. Don't just assume this is an adrenal problem. Heather |
Title: Re: General Masto Symptoms Post by Lisa on 01/03/11 at 14:13:28 Archived from Original Forum - nanciswell author I am awaiting the results of the tryptase test. The doctors who I see a few times a year now for 20 years who specialise with patients like me hopefully have done enough tests on me.. I just feel I cannot go running around for an answer that is not there.. Not in the condition I am in now. I can see resting for the next few months and then revisiting the " next step plan of attack ." nanci |
Title: Re: General Masto Symptoms Post by Lisa on 01/03/11 at 14:14:23 Archived from Original Forum - starflower author What kinds of doctors have you been seeing? What kinds of tests have you had recently? Heather |
Title: Re: General Masto Symptoms Post by Lisa on 01/03/11 at 14:16:04 Archived from Original Forum - mikev author Heather: & any of the rest who have taken pepcid complete as she recommended and found that it really works. Have notice local stores, ie.Walgreens have none & nobody else does. Well from the same company that gave you the recall on soft rolaids that also helped some, guess what another recall. The company maiking these products for J &J is Mc Neil. This is the company that had a mess up on tylonel a while back as well has done it again. Sloppy manufacturing processes. So be careful. MikeV |
Title: Re: General Masto Symptoms Post by Lisa on 01/03/11 at 14:17:41 Archived from Original Forum - jysmith author Nanci, I responded to your other post, but I also want to add my agreement with Heather that there still may be things to rule out, whether or not you also have a mast cell problem. There are other disorders and diseases that can cause some or all of your symptoms. There are immune deficiency disorders that cause symptoms similar to mast cell disorders. Some people don't produce antibodies to certain bacteria and take infusions for it. The chronic infection and feelings of adrenal exhaustion make me wonder, too, about other possibilities. A good reason to see an expert infectious disease medical doc, someone other than the docs who haven't been able to help you over such a long period of time. In my experience, the doctors first ruled out cancers, then auto-immune problems, then infection and allergies (bacterial and fungal), and finally tested for a mast cell disorder. |
Title: Re: General Masto Symptoms Post by nanciswell on 01/20/11 at 11:18:35 Would a possible reaction be getting fatigued after drinking hot water?? It has happened too many times not to think it is a reaction.>> But I can not figure out why then would I not have the same affect from eating hot food?? Ah another perplexing experience.. nanci |
Mast Cell Disorders Forum » Powered by YaBB 2.3.1! YaBB © 2000-2009. All Rights Reserved. |