Mast Cell Disorders Forum

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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> Random questions http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1315413698 Message started by hb36 on 09/07/11 at 05:41:38

Title: Random questions
Post by hb36 on 09/07/11 at 05:41:38

I am anxiously awaiting my appointment with Dr. Afrin coming up soon. I am feeling pretty bad lately so it can't come soon enough. I had a few questions I was wondering if any of you could answer in the meantime? To give a little context to my questions, I have Hyper POTS and EDS. My heart rate variability lately is awful. Sometimes I'm at 40 bpm and can barely function and 2 minutes later when I'm standing and getting my kids ready for school I'm at 150bpm. I'm using all of my POTS tips and nothing is working. I'm not even on a bblocker anymore.

1) Could I possibly have Hashimotos if my TSH, T4 and T3 are normal? It seems that a lot of you have thyroid issues/Hashi's...what is the connection to MCAD? I have a lot of thyroid symptoms above and beyond the POTS stuff.

I'm getting hives lately...just a few here and there but hives are new for me. I saw a dermatologist last week. She said I didn't have any seen of masto on my skin. She said I have dermatographia but before I left she looked again at the scratch and changed her mind. She said I COULD have a mast cell problem and just gave me a list of meds to avoid and that was it. She was not helpful.

2) I am taking Allegra 180 mg and Zantac 150mg first thing every morning and a Benadryl at night if I feel wired or twitchy. Still my stomach erupts into tidal waves almost every morning before I even eat anything and my heart rate is so variable. Do a lot of you feel especially bad in the morning?

3) My GI doctor dismissed my concerns about masto because 1) I don't flush 2) I am chronically constipated and 3) my "biopsies looked great". I got the pathology report..there was no mention of special staining for mast cells. I don't agree with her that these things preclude me from a mast cell problem. Is my thinking correct?

Thanks!

Title: Re: Random questions
Post by kimtg68 on 09/08/11 at 02:35:58

I'm not much of an expert on these matters as I'm still learning and working toward a diagnosis of some kind but in my opinion I would say based on the stories I have heard from others and my own experience that there are MANY doctors out there that may 'think' they know Masto but really don't. I think it's wise for you to educate yourself, ask questions(as you have here) and don't settle for an opinion of a doctor if your gut tells you otherwise. I've been doing just that for years now and if I had not I would be so far off from having any clue as to what may be going on with me. I too am going to see Dr Afrin. In fact I will be seeing him this coming Monday. Seems you have contacted him as well so I applaud you for taking the steps to see a doctor who knows more on this topic.
I'm sure some of the more educated ppl on this forum will have more to say to you that may help. I wish you loads of luck!
Kim

Title: Re: Random questions
Post by MastoGem on 09/08/11 at 03:06:47

I'm new here too so I can't answer your questions.

I can't claim to know much of anything. But I wanted to respond to what you wrote, because I do agree with you on your third point that it doesn't seem that your GI doc has enough information to rule out a mast cell disorder. My GI doc failed to diagnose my MCAD.

I don't know if you have a mast cell disorder. But like you - I don't flush; don't have a bowel problem indicating much of anything; have only a 'light' case of dermographism; and my biopsies only showed Barrett's - well until another doc had it stained for tryptase to look for evidence of a mast cell disorder.

I recently read that this "tryptase immunohistological stain" has only been available commercially for about a year. I believe your basic GI doc doesn't keep up with such things and in my opinion wouldn't know anything about it.

Good luck. And good for you for sticking to your guns!

Title: Re: Random questions
Post by kimtg68 on 09/08/11 at 03:14:53

One more thing, if you've had a GI biopsy you may be able to get those retested for mast cell disorder(perhaps a cd117 stain). Dr Afrin had me do that (still an ongoing process). Also I failed to answer one of your questions. YES mornings are worse for me and I too can have bad increase in symptoms even before eating or drinking anything!!! My heart rate is so irratic at times that I can't find a rhyme or reason for it.
I apologize for my lack of thought process. There was something else I was going to mention and have already forgotten. If it comes back to me I will try to get back on here to post it.
Kim

Title: Re: Random questions
Post by DeborahW, Founder on 09/08/11 at 04:24:35

Hi. You are having stomach issues in the morning because you are undermedicated. Many of us take 300mg Zantac in the morning AND the evening. So that is 600mg per day. You are only taking 150 mg per day.

Overnight we tend to trigger even more, so that evening dose of Zantac is very important.

Title: Re: Random questions
Post by texan1960 on 09/08/11 at 04:37:17

Not sure if you ever found out for sure whether you had IC, I know you had the one appointment with no much info gained (frustrating)...but according to my uro, if you get diagnosed with IC you have a mast cell problem and it alone, with no other symptoms, in itself would need to be treated with antihist. With the hives, etc. you are having, it really sounds suspicious. I am so glad you are going to Dr. Afrin, I am anxious to hear what he says. I do not have dematographism, but do have IC, IBS, fibro/neuropathic pain, flusing, occasional rashes and hives, feeling like I could pass out at times, am completely heat intolerant, have had weird pigmented spots, etc. I guess what I am trying to say is that it seems like each person on this board has mast cell issues manifested in a variety of ways. I would think just because you don't flush and have IBS-C, does not mean you dont have MCAD. But, I am not a dr, just an often perplexed patient muddling my way through!

Title: Re: Random questions
Post by iamnotalone on 09/08/11 at 18:02:52

Hey all;
Its late and this is the only time I seem to have lately to get online; so fatigue may affect my post... I am finding sooo much useful info on this site- yet hard to put it all together and/or find it again later.
Perfect example; the book idea on Masto disorders. Cant find the post about it and its a great idea; because there is either no info on it, or conflicting info, or too much to absorb at once- depending on the source on the internet. I also think a Glossary would a big help. There are so many terms that are new to me as well as others. I have TMEP and Ive read posts where someone (sorry I forgot who) actually used the words as separate things, like telangectasias, etc-and here I thought the whole telangectasia eruptiva macularis perstans was just a Looong name for it. I recently found out what systemic, and indolent meant; and still am not sure what Leakers are, but pretty sure "shockers" are people like Ramona- who Im pretty sure sure God put here to teach some of us it could always be worse. Anyways, just a few latenite ramblings. Youll all be in my prayers as usual.
lori

Title: Re: Random questions
Post by DeborahW, Founder on 09/09/11 at 00:47:07

Lori, you sound just like me -staying up late at night! I am such a night owl, but I have figured out that it is bad for my symptoms. Whenever I go to sleep early and get 8 or 9 hours sleep, I feel great and have nearly no symptoms. Yet, I do love to stay uo late.... LOL

Title: Re: Random questions
Post by DeborahW, Founder on 09/09/11 at 00:54:37

Lori, great idea for adding a glossary to a book! I don't recall who mentioned a book, but that is something I could do since I have already written a book (not masto related). Hmmmm.....

Title: Re: Random questions
Post by kimtg68 on 09/09/11 at 01:08:43

Lori, I remember seeing a post here just recently about this book that was SO WELL put together and I even checked out some of the links that were listed in the table of contents. Let me see if I can find that again (yeah I too forget where I saw stuff and try to go looking for them again but I type in key words in the search area and that helps) I will be back and hopefully with direction to this book topic :)

Kim

Title: Re: Random questions
Post by kimtg68 on 09/09/11 at 01:41:23

Found it! Then panicked cause I couldn't remember where to go back to so I could share with you how to find it! Lol
Anyway, the binder idea is under Emergency Protocols and Information and the topic is Binder of medical information.
Great idea and well put together.
:)
Kim

Title: Re: Random questions
Post by hb36 on 09/09/11 at 05:09:09

Thanks to ALL of you for your helpful tips and reassurances. Sometimes when it feels like we are walking alone through this diagnostic and treatment process, we just need reminded that just because several doctors tell us "no, you don't have x" doesn't necessarily mean we don't have it :) It seems that most of you got your diagnosis because of your unwavering persistence!

Kim, I will be interested to hear how your appointment goes with Dr. Afrin. I wish you the best and hope that you get some answers! Did he recommend you go back to your own GI doc to get the mast cell staining or did one of HIS pathologists look at your biopsies?

Deborah, your tip helped. I do feel a bit better today. Thank you! I haven't been sleeping too good lately and I agree with you about getting enough sleep at night! That is helping me a little today as well.

Title: Re: Random questions
Post by DeborahW, Founder on 09/09/11 at 06:01:29

I am so glad to hear that it helped! Continue taking the Zantac twice a day and you will continue to feel better each day even more! I think as it calms things down in your GI system, it allows things to heal up. In a couple weeks (probably less), you might feel like a whole new person! Don't forget, though, it is just as important to avoid eating or drinking any items that trigger you.

Title: Re: Random questions
Post by kimtg68 on 09/09/11 at 10:28:30

Hb36, Dr Afrin suggested I go back to my local GI doc to get these tests, BUT (isn't there always a but) GI doc wasn't familiar with the tests so he didn't want to participate. I had to go to my family care doc and with the printed letter I had from Dr Afrin with listed tests and a welcome for any of my docs to contact him if they had questions and then family doc helped me.
I will be sure to post my experience with Afrin next week.
Kim

Title: Re: Random questions
Post by lynda51 on 09/10/11 at 18:47:58

I had the privilege of seeing Dr. Afrin on August 31st. I was so impressed with how he has handled my "case" etc. You will feel very well cared for! I had never been to the "South" and Southern hospitality really does exist! Everyone was wonderful and caring.

One thing Dr. Afrin told me (I was diagnosed with dysautonomia/POTS in Dec. 2010) is that many times neurologisst and cardiologists diagnose us with these disorders but they ALMOST NEVER are the correct root diagnoses because they almost never can account for the full range of our symptoms!! After seeing him, I believe he was telling me that if we can get the mast cell disease under control, the other symptoms could very well go away. Now wouldn't that be nice. :)

Sometimes when I am up for a long time my pulse can get as high as 220. It's icky!! Do you wear compression hose? I know they are a pain to put on and wear, but they will keep your heart rate down. There are also some fairly simple exercises that will help. If you want to PM me, I will try and explain them to you.

I have Hashimotos as well. I am on synthroid and have been for many many years. My tests were always abnormal so I am not sure if you can have a normal TSH, T3 and T4 and still have it. Hashimotos is an autoimmune disease so they should be checking your ANA. But if you are not in a "flair-up" then that too can be normal. It is my understanding that they are still trying to figure out why many of us have autoimmune as well as mast cell disorders....another mystery.

Dr. Afrin contacted the health care system where all my docts are here in WI and asked them to re-pull all my "blocks" and take fresh cuts from each and every block (from my colonoscopy and endoscopy last year). He sent them a list of how to stain them. You are right, most GI specialists will not think to stain them for mast cells. They need to be stained with CD117 and can also Giemsa, tryptase and toluidine blue. (And don't ask me what those are, I haven't a clue!!) He told them if they weren't comfortable doing that in the Pathology Dept. here, they could send them to him and he would do them in SC. So maybe that would be an option??

Now remember, I am totally new at this...but I do remember reading something that said that most histamine is produced in our bodies in the early morning hours....maybe that would explain why mornings are always so much worse than evenings. I am not sure...any experts out there who can add something to this?? It is almost 1:00 a.m. where I live...I stay up because I feel ten times better at night! (And going to sleep is hard!)

I wish you all the best at your appointment....and hopefully you will get a diagnosis! Let us know how it goes!
Hugs to you, Lynda

Title: Re: Random questions
Post by Lisa on 09/11/11 at 00:15:17

Lynda,

Your impression of what Dr. Afrin had to say is correct. In dealing with the root cause, that of the mast cell disorder, the majority of your symptoms should indeed be corrected. Yet, due to the nature of this disease, you will never fully and permanently correct them. Why? Because this is a chronic disease - in other words, your body is chronicly releasing mast cell mediators and they are chronicly affecting your body in all of it's many areas.

If you have SM, the invasion of the MCs produce certain types of damage to the body. If you don't have SM, then you don't have that damage being done, or you may but at a much lesser degree depending upon the form of masto you have. REGARDLESS OF THE FORM, the activation of the MCs do their own kind of damage for the constant, chronic mediator release affects the ENTIRE body in every single system we have. This is why we have overall body effects going on. This is a constant battle for us. But in trying to keep those MC stable by taking MC stabilizers and by dealing with the mediators by trying to block their effects upon our bodies, this helps us to reduce some of the effects in their various areas.

Our antihistamines and leukotreine blockers are not going to stop the damage that is being done for the only way to stop the damage is to force the MCs to stop releasing their mediators. However, we can reduce the effects (not the damage) by taking the histamine blockers and leukotreine blockers. They only block the effects, but by blocking the effects, they help make us more stable and by making us more stable, they end up reducing the triggering. So they in turn indirectly help to reduce some of the damage being done.

This is why we can't stop the damage completely, but we can reduce. This is why we can find so much improvement that some if not most of our symptoms greatly improve, but it takes a lot of work from us and a real sensitivity to what our body is saying to us.

Lisa

Title: Re: Random questions
Post by lynda51 on 09/11/11 at 03:46:36

Thank you Lisa.
I have wanted to write more to encourage others to seek a mast cell expert or at least a Dr. who understands mast cell disease but I have been so ill since I have gotten back from SC. I am sure the lengthy trip has something to do with that although every thing went amazingly well. I am not sure if this should be posted here or somewhere else and I can't think straight to figure it out. sorry.........

I am glad you wrote about damage to our body. I had such an awful night last week after I got back that I had my husband call 911...(I woke up out of a sound sleep at 3:30 a.m. and couldn't catch my breath). Unfortunately our phones didn't work as we are in the middle of remodeling and a wire must have been disconnected when they were working. To make a long story short, after he went for his cell, I started feeling better so I told him not to call.

He wasn't even able to find a radial pulse. He found a carotid one (obviously) but then I got the worst headache I've had in years. I know if I go to the ER here, they have no idea what to do. And since I don't have an official diagnosis as of yet, I am NOT being treated. I honestly felt like I could have had a stroke.

I did start on low doses of Claritan and Pepcid AC (the stomach pain is intolerable...the bone pain is just as bad). I did call Dr. Afrin's office but he was out of town. My next step is to call my oncologist who will be coordinating my care with Dr. Afrin and see if he has any suggestions. I was completely amazed at how the stomach pain was lessened with just one dose of the Pepcid. I was concerned however that my pulse was irregular and I became really irritable after I took it and then fell asleep right after that. This is wayyyyyyyyyy too complicated to understand!!

My question is this...how dangerous is it for us NOT to go to the ER? I know that is an impossible question. I even called my primary just to get some kind of protocol to help me make a decision as to when TO GO and when NOT TO GO...no answers. She told me to call SC. I am stuck until I get an actual diagnosis and honestly quite scared. I haven't had that bad of a time for over a year.

Dr. Afrin showed me (on his desktop) the hundreds and hundreds of chemicals, their reactions and counter reactions that can happen when our mast cells release mediators. I was stunned! But it also helped me understand the reasons why are symptoms are so multifaceted!

As always, I appreciate your input. The more information we have the better decisions we can make for ourselves. Thank you!

Hope you are well. Take care........hugs, Lynda

Title: Re: Random questions
Post by hb36 on 09/11/11 at 07:37:52

Lynda, I'm happy to hear that your appointment went well. Thank you so much for taking the time to share your experience with Dr. Afrin, etc. with us. Sorry to hear you're having a hard time right now with symptoms. I know you said that Dr. Afrin is out of town but he has been very good with responding to me via email (even responded to me today) when I had two questions for him and I'm not even his patient yet. I would email him and ask him for his advice. He is your doctor and from what I have heard and experienced, he is more than willing to help. You said you are taking low doses of antihistamines. I would think you could up those meds and see if Benadryl might help, too.

Title: Re: Random questions
Post by lynda51 on 09/11/11 at 09:39:14

Thanks for your help. Even though I have seen him, I always worry about "bothering" him...that's just me.

I am going to write him because I feel like I am in a fight for my life today. ugh.. I really needed the encouragement. Thank you soooo much!!

Take care!!

Title: Re: Random questions
Post by kimtg68 on 09/11/11 at 10:23:43

Lynda, just caught up on your posts from visit with Afrin (thx for the PM also). I'm exhausted from the trip but wanted to let you know that even though I do not have a diagnosis either yet, I told Afrin all the mega doses I'd antihistamines I had been taking and getting some relief from. He did not discourage me from doing this. All he suggestEd was IF I could tolerate going off these medications for testing purposes one week prior to my appointment, to do so BUT ONLY if I could stand to give up the relief I had found through them. So in lieu of his comment to you about having a classic case, and the symptoms and troubles you are having I would recommend trying some antihistamines....of course getting his opinion is a great idea! I hadn't realized just how much relief I was getting from them until I went off them a week ago! I CAN'T WAIT TO GET BACK ON THEM!!!!
I wish you much relief and fast
Kim

Title: Re: Random questions
Post by Lisa on 09/11/11 at 11:04:04

Lynda,

GET THAT SILLINESS RIGHT OUT OF YOUR HEAD!! Dr. Afrin is YOUR DOCTOR and he knows what he´s doing!! WRITE AN EMAIL NOW! Explain to him what happened and ask him for his directions as to what to do!!

I´ll bet you anything that he will say, GET TO THE ER RIGHT AWAY if that happens again. Think about it clearly Lynda, your husband could not find a radial pulse!!!! HOLY COW!! Do you need it to get much worse than that???? This has totally freaked out my doctor for she too ahs caught this with me and it freaked her out!! And she's a masto specialist too! So, you bet your life that you are NOT doing well and that YES you need IMMEDIATE ATTENTION!!! You need epinefrine for your BP has gone so low that it's affecting your heart's ability to deal with everything!! You also need to be lying flat out when this is going on!

Write to Dr. Afrin, ask him to send to you an email with his letterhead with instructions for the ER doctors and then PRINT OUT SEVERAL COPIES and have them on you, in your car, with your husband, etc so that no matter where you might be, you've got doctors instructions WITH you so that you can go to ANY ER and get appropriate attention. Also, make sure that Dr. Afrin's cell phone is printed on that paper so that the doctors have a means of reaching him when in doubt. You also need the very same kind of letter from the doctor who has agreed to work with him for the ER needs a LOCAL doctor they can refer to as well. This way you can RELAX and feel PROTECTED!!

Yet, if this kind of thing happens again, even before you call for the ambulance, get that bottle of Benedryl and start swigging sweety for you are needing immediate help and if you have the Epi pen - USE IT!!! Remember, it takes time for the ambulance to reach you and if you are in such a state as that by the time they do reach you it could be too late! Taking that Epi is what can save your life - ASK RAMONA!! You are in denial and that's why you didn't respond to the situation - WE ALL DO THIS! It's a very NORMAL response to not want to really believe that we are in such danger, for our healthy brains don't want to accept that we are really so very sick. This is a normal, healthy psychological response in that we fight to keep a normal life and due to that fight we don't want to recognize and accept that we are indeed living with a chronic disease which can be life threatening. But, what is not healthy is to continue fighting against the reality of what we are living with. Also, you've got to recognize that this is totally unfair to your family for they have to live with you getting so very sick too!!

This is why you've got to stop denying the reality of your situation and do what you must, which is go to the ER when you're in such a state as that.

Now, Lynda, I'm not calling you on the carpet, for I too just recently went through one of these and I fully recognize what's involved there. Often, we are so sick that our brains are not processing it all properly and so we stubbornly refuse and are even incapable of recognizing what is going on. We really need for our families to TAKE OVER from us for our minds are not really capable of judging this situation properly. The brain fog is a DEFINITE FACTOR! So, this is where you need to have a really good conversation with your husband and let him know that when you are so sick that you're just not really able to call the shots, that you need him to make some decisions. Yet this is also when you need Dr. Afrin to spell it out clearly for the both of you as to when to recognize the time to run to the ER!! We all need this help for we're unable to recognize exactly when we are in serious trouble!!

So, this is something that Dr. Afrin can spell out for you, Lynda and you need to ask him to do this for you, seeing that he is now your doctor. Don't worry about a closed diagnosis yet. You don't need that in order to be properly treated. I'm sure he can help you with this as well.

As far as your suspicion of it being the trip, I'M CERTAIN OF IT!! So, keep a really low profile for a couple of weeks until your body can fully recuperate and you may need to up your antihistamines until things calm down for a while.

I hope this helps!

Lisa