Mast Cell Disorders Forum

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http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> Newbie with Dysautonomia and anaphylaxis. Suspect MCAD http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1328076762 Message started by Doozlygirl on 01/31/12 at 18:12:42

Title: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Doozlygirl on 01/31/12 at 18:12:42

Hi. I'd like to introduce myself. My name is Lyn and I live in northeastern Wisconsin. I am so glad to have found this site, after learning about mast cell related disorders from a forum on dysautonomia. I've been ill for years, but able to manage my symptoms until cardiac symptoms prompted a tilt table test/other autonomic tests that demonstrated I have severe orthostatic hypotension (OH) as well as sudomotor and cardiovascular autonomic neuropathy.

My debilitating symptoms are episodic and I've been able to identify certain triggers, such as entire classes of medications (betablockers, a dozen different antibiotics, pain meds, anesthetics, etc), fragrance, certain foods, hot temperature, menstrual cycle, showers, alcohol, emotional upset, and stress. After spending 2 years of trying to identify the trigger of my OH and make solid progress toward improved health, my autonomic neurologist witnessed my severe flushing and sent me for a dermatology consult to rule out mastocytosis. Tryptase was 2.5 and skin biopsy did not show increased mast cells. I am now looking to MCAD to explain my situation. i follow up with both specialists in the next month.

About 8 years ago, I had been sucessfully treated by a renowned environmental allergist for systemic candidiasis, multiple food allergies, environmental allergies, and idiopathic anaphylaxis. I was on H1, H2, PPI, food and environment allergen drops, nystatin powder for skin rash, and gastrochrom, and told my mast cells needed to settle down, which they did. Meanwhile my symptoms changed and I was then chasing down endocrine issues, such as Hashi's and adrenal insufficiency, possible neuroendocrine cause, taken off some of those meds, and added others for various reasons (insurance coverage, cross reactions, new MDs)

Fast forward to late 2009. 3 back to back traumatic events left me bedridden, which were later diagnosed as OH/Autonomic issues, and been sorting out causes of my symptoms ever since. Every time I begin to make progress, something sets me back. Pursued diet, supplements, stress relief, cleansing, and excercise when my other attempts failed.

Time to revisit those mast cells. Now that I understand the clinical description of anaphylaxis, I can say I likely have low level anaphylaxis reactions several times a week, with numerous significant reactions and three requiring immediate epi/ambulance and ED care. I am linking my GI evaculation, flushing/blotching, headaches, nausea, lightheadedness, to probable mast cell activation/degranulation episodes, since I have been able to abort/limit these reactions with H1 and H2. I wonder what a full regimen could do for me?!

Anyone have facial flushing and blotching on neck that does NOT itch? Dermatologist told me my blotching is likely not typical hives, since histamine release causes raised hives that itch. Told my skin biopsy showed significant dilated vessels, and they are calling my flushing some type of vascular leaking. Anyone familiar with this?

I plan to post specific questions in the very near future, but until then I welcome any advice or guidance you may offer regarding my specific situation. I have been reading over this site and the web for weeks, and have become familiar with the general guidelines.

Thanks for your responses.
Lyn

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Anaphylaxing on 01/31/12 at 18:47:00

Lyn, you sound extremely coherent and logical. Way to go! A feat in itself in the face of illness. Sorry for your struggles.

I definitely have had face/neck chest and sometimes abdominal flushing that is non pruritic/itchy.

I also have recurrent anaphylaxis and POTS, but have only been battling for 9 months and am trying to sort out the proper medications/trigger avoidance for me. I also have probable steroid induced adrenal insufficiency.

Your symptoms definitely sound familiar and like many could fit in quite well with us.

Do you think any foods could be making you react?

Have they ordered markers of MCAD like urine N methylhistamine or prostaglandin D2? Would be good to get those checked and see if your doctor could consult with a mast cell specialist. Or, better yet, be seen by them yourself.

What meds and what doses are you taking now? Most of us are on high dose H1/H2 blockers and mast cell stabilizers

You will find lots of help here and there's lots of hope to get those nasty symptoms under control

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Lisa on 02/01/12 at 16:30:02

Hi Lyn! Welcome!!

Sure, I get that blotchy rash when I'm flushing and nope, NO ITCH!! That rash is just one of the ways we show we're reacting and flushing and it's not hives, it's a rash and it goes away as quickly as it comes.

I think you need to ask for a tryptase test for I have a strong feeling you've got MCAS or even SM but until you are in the hands of a specialist who knows what he's doing you're going to continue running around in circles!!

Lyn, I think that after all these years, you need to see an expert in MC disorders. We'll be happy to give you the names of doctors if you tell us where you live. Perhpas we know of someone near you.

I hope this helps!

Lisa

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by lynda51 on 02/02/12 at 12:59:11

Hi Lyn,

Welcome! I wish I had the medical knowledge to answer your question about vascular leaking. I have suspected the same thing in my case. I wear prescription compression hose when I have to stand for more than 10-15 minutes. They have helped a lot. I was diagnosed with ANS dysfunction (dysautonomia) at Froedert Medical Center in Milwaukee. (I live in Central Wisconsin).

I was not able to find anyone in our state (or in the Midwest for that matter) who specializes in mast cell disorders. I traveled to the east coast to see a doctor. I was encouraged by others on this site to find a mast cell expert and I want to encourage you to do the same. I was diagnosed correctly and am just starting on a regiment of medications.

You have been dealing with this for a long time now and your symptoms are severe enough that it would really be beneficial to you to get the best possible help you can. Just the fact that you improved on the H1 and H2 blockers as well as the gastrocrom says a lot as well.

The forum advisors can send you in the right direction (they probably already have) and all of us will be here when you need us to be!

Take care....keep us posted.

Hugs, Lynda

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Doozlygirl on 02/02/12 at 17:08:25

Thanks for the responses and kind words.

Ana, thanks for the recommendations for the N Methyl histamine and prostaglandin D2. Have not had them yet. Dematologist said they were unnecessary if tryptase came back normal. Didn't understand enough at that point to push it. Anything special I need to know about these tests that would help ensure accuracy? I see autonomic neurologist in 2 weeks and dematologist 2 weeks later.

I need to ask specific med related questions, so plan to follow up with post in that correct partition.

Lisa, my tryptase was 2.5, drawn while I was flushing, but with no other symptoms at the time. I live in Wisconsin, not far from Green Bay.

Can anyone explain the difference between MCAD and MCAS? Are these terms used interchangably or are they actually two different beasts?

Lynda, what a small world. Froedtert diagnosed me with Autonomic Neuropathy and OH, and I head back down there in 2 weeks. I am now pulling together handouts on mast cell disorders. Dr Barboi knew enough to send me for a skin biopsy to rule out mastocytosis, but is not familiar with the term MCAD. Dermatologists there don't know what to do with me. May I ask who you saw to get your dysautonomia diagnosis and if you recieve onging care at Froedtert? Looking for my angle to proceed with mast cells. I am new to this site, so wonder if there is a PM option here, in case you are more comfortable sharing details that way.

I look forward to posting and learning more to help me navigate the world of mast cell disorders. Thanks, Lyn

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Joan on 02/02/12 at 18:20:58

Hi and welcome to the forum! Sounds as though you've been through a lot.

I have flushing and blotchy, flat rash on my neck and upper chest when I have a degranulation, as well as most of the symptoms you describe. I completely agree with others that a mast cell disorder specialist is the quickest way to a diagnosis and feeling better.

Here's a link to the low histamine diet, which can help you avoid foods that trigger mast cells to degranulate. If you can stick with it for a month and get on enough of the right meds, you might be able to add back in foods (one "new" food every other or every third day) and tolerate them.

Have any of your doctors ruled out carcinoid syndrome or pheochromocytoma? It's unlikely you have either, but those are usually tested to rule them out before pursuing the mast cell disorder diagnosis.

Feel free to ask whatever questions you need. That's why we're here!

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Mousse on 02/03/12 at 00:16:43

Lyn,
The skin on my neck I had biopsied that did show mast cell issues was like what you describe. My diagnoses for that was TMEP. My tryptase was 4, but if you've been reading this forum you know that doesn't rule out MCAS. I hope you are able to make some headway in a diagnoses. It isn't easy. Welcome to this forum. The people here have so much knowledge and are extremely kind. Cindy

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by goldielove on 02/03/12 at 11:05:29

IF you are in Ohio why don't u see Dr. Blair Grubb he is very kind and a great Dr and knows about pots and dysautonomia he has a nurse practioner that works with him that is equally as good. He is in toledo I went see him a long wait but so worth it. He is very good dx mast cell disease as well, as he has seen so many POTS patients with this and pots as well. Good luck

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Lisa on 02/03/12 at 13:42:41

MCAD and MCAS are the SAME THING! This began when some doctors wanted to describe and diagnose those patients who were showing an activation disorder versus a proliferation disorder which is SM. But there was no standardization between whether to call it a Syndrome or a Disorder. It appears that they have settled upon Syndrome so it should be called MCAS. This and SM come under MCDs or Mast Cell Disorders.

Make sense?

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Riverwn on 02/04/12 at 07:14:17

Hi Lyn!
I have to agree with everyone especially Lynda,,, a simple question a mast cell DR would ask when evaluating you is--Do antihistamines help?? If the answer is yes, then they pretty much turn to a Mast Cell problem of some kind.

I also flush VERY strongly when I am reacting to mast cells going crazy--and the flushing area doesnt itch, I do itch but not there--I break into hives then itch!! I also "leak" which is a type of angio-edema.. you are also a shocker and leaker, you need to be evaluated by a specialist in Mast Cells soon to stop this vicious cycle of sickness.

You skin biopsy coming out negative doesnt mean no mast cells, just not where they biopsied.

I would encourage you to try Zantac 300 mg twice a day--thats what most of us need to calm the tummy down and it works double duty as an antihistamine too! Of course, talk to your DR about this but it cant hurt you to try it for a week. I would like to know exactly which meds you are taking now??

A few more suggestions--you need to turn into an investigator for your own health. You need to start keeping a diary--it should include--what you eat )and when), how you feel, activity level, which meds you took etc.. you will start seeing patterns and it can help you when explaining to your DR. Thats it for now!

Hope you are better soon and in control of your masto beast :)
Hugs
Ramona

PS time for you to start carrying an EPI pen and some Benadryl on you at all times, just in case.

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Doozlygirl on 02/04/12 at 18:08:15

Thanks everyone, I appreciate all your your sage advice. I do plan to seek out the help of a expert, but first have to find a doc in my state who can help me get the probable diagnosis and order a few tests to get me to that point. Do most have a allergist/immunologist to get to this point?

Since reading up on MCAD, I am unsure what to take for my severe menstral cramping. I was fortunate that I could muttle thorugh the last one, which means next month should be tough. In the past I have taken advil or 550 mg naproxen, but while it stopped the cramping, it caused other symptoms. Never considered that the other symptoms were potentially caused my those NSAIDS. What do others do/take for miserable menstural cramping? I see my doc in 2 weeks and can ask for something then.

I read something about supplements impacting mast cells on a You Tube video. Is there some general advice here? Thinking about resuming Magnesium, and if no blatent issues with mast cells, then will ask my MD about it.

Joan,
Thanks for the tip on the low histamine diet. Working on that already. Pheo has been ruled out 4 times, including the plasma mets twice. I did a 24 hr 5-HIAA at least 5 years ago, but it was not during a flushing episode. Not sure if I should ask to repeat it. Is the N Mehtylhistamine and prostaglandin test urine or blood? I will have to look into those before my appointment, but if it's urine, wil definitly ask for 5-HIAA at the same time. I'm assuming the above tests are better when in an episode?

Goldie,
I am in Wisconsin, not Ohio. Thankfully, we have a full autonomic lab in my state with awesome qualified autonomic neurologists, and a decent EP cardiologist, who treats those with POTS. I don't have POTS, I have a different form of dysautonomia -- autonomic neuropathy, which involves my BP, not HR, as well as body temperature/sweating. Thanks for the tip on Dr Grubb, I have read good things about his work.

Lisa,
Thanks on the explanation on MCAD/S. It was pretty confusing when I first began my research journey, and you've cleared up a major chunk of my confusion.

Ramona,
Shocker and Leaker both, huh? I wondered if my two previous biggie episodes, which required epi 7 and 5 years ago qualified me as a shocker. Suspected the Leaker designation.
I also itch in places other than my my blotching neck/chest. My legs sometimes drive me nuts. Previously I thought it was related to my blood pooling from the OH. I have noticed much less of this with the antihistamines. I have expired gastrochrom laying around and plan to make up some cream.

I am currently prescribed 75 mcg Levoxyl, 40 mg bioidentical progesterone cream (days 14-28), 5 mg zolpidem, 1.5 mg melatonin, 50,000 IU Vit D weekly, 10 mg verapamil (on hold), 550 mg Naproxen PRN, EPIx2 PRN, cetirizine 30 mg (but taking up to 2 10 mg pills daily after previous reaction which I posted about in medications section). I have also recently added zantac/generic 75 mg to start and have taken a second dose during several intense episodes. I will have to taper up on the zantac, since I do react to meds. Been on the 75 mg for about 10 days so time to go up.

Started a log. Should have some decent data to take to my docs.

I now carry EPIx2 (and have a few expired ones next to my bed), H1, H2, benadryl, PPI everywhere I go.

The punch skin biopsy site included an area where I was flushing. Not even sure what they actually tested. Need to follow up on that one.

I truly appreciate the concern and advice. For the first time in years, some of my goofy episodes/reactions/ and symptoms actually are making sense. Thank you from the bottom of my heart.
Lyn

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by DeborahW, Founder on 02/05/12 at 00:54:41

Hello and welcome! Just stopping by for a sec because I am sick and don't want to be on computer long (stomach flu sick, not Masto sick). There is something you have mentioned several time that makes me think you will find yourself disappointed. You have said that you are going to ask your doctor about a few things, such as what supplement you can take that won't trigger Masto. 99% chance that your doctor won't have any clue or will give you the wrong answer. The reason so many of us see a Masto specialist is because our local docs aren't knowledgeable enough or the think they are, but in reality are not. You can see evidence in that in some ways already. Your told you that spots/rash that doesn't itch would hive up if it were related. Not true. Many Masto spots are not raised. Only upon being rubbed or scratched, will they hive.

If your doc thinks you have mast cell disease, then you can contact an expert now or wait to have him do more tests. Even if your test results come back all normal, though, you still have a good case for having MCAS or IA. So you would still qualify for an expert.

By the way, for menstrual cramping, I take 2 motrin with no problems. I have IA (Idiopathis anaphylaxis), although it is nicely controlled now through daily meds and lifestyle changes.

Well, hopefully I have given you some food for thought...

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Doozlygirl on 02/05/12 at 14:21:05

Thanks Deb for your post. This forum is giving me plenty of food for thought and helpful tools to move my care forward.

I guess some of my posts aren't coming out as complete as they should be, and am sorry for that. I try to be concise, but struggle since I'm inherently verbose. So let me fill in some obvious blanks. I have a fantastic brilliant autonomic neurologist at a top medical college in my state who I feel will be a great asset in getting me to the next level. After my diagnosis with autonomic dysfunction, my care was followed by his NP, and we made great progress, but "something" would trigger me to go backwards by months. I should have stabilized by now with everything I am doing to help my autonomic system issues. This prompted an appointment with my neuro, and within minutes after observing my flushing/blotchy neck/chest and comparing to recent symptoms and past history, he suspected mast cell involvement and sent me for a dematology consult. Although the dermatologist is most generous with his time, I can see that he provided less than stellar medical knowledge on mast cell activation as compared with what you all have shared about mast cell disorders. I am seeking these details from you all, so I can better understand mast cells and see how it applies to my situation.

I will definitely pursue the help of the east coast experts, but from what I am reading in various posts here, I am not ready for that. Looks like I need to cross a few more t's and dot some i's. Suspect I need a bit more testing to rule out carcinoid, assess my state of activation compared to baseline, test for metabolites, satisfy my insurance documentation needs to push for out of state referral, and document my symptoms looking through mast cell "glasses". I have followup appointments in the next month and plan to use this time wisely to prepare for future consult with a mast cell expert.

Regarding my queries on magnesium, supplements, colorings, and pain meds, I was looking to guidance from here with plans to research them in the pharma world before discussing with my autonomic specialist. I should have pointed out that I don't expect him to be familiar with mast cells impact (that's why I am looking to your collective experiences), although he knew enough to convert from a betablocker to verapamil talking through what he thinks is going on with me. I need for him to document in my medical record that I do not tolerate taking XYZ and why, now knowing that many drugs I have reacted to in the past are known mast cell degranulators. This is a relatively simple way to connect my dozens of documented sensitivities to suspected mast cell involvement. I can clearly see that my medical record needs to be transitioned from a heavily weighted neurology perspective to suspicion of possible mast cell disorder, and who better to provide that than my autonomic neurologist?

I've worked in medical imaging and hospital administration for 20 years and am very careful with each step in navigating the system. Seeing the wrong doc in a practice can shut out your chances of seeing the right doc in that same practice all due to medical professional courtesy. Having blood drawn in the office verses the hospital can mean it is sent to a different lab, meaning different technique or standardized ranges, than your previous tests. Medical imaging performed in NON-hospital offsite clinics will NOT be as equipped to handle anaphylaxis as a hospital based imaging department.

I appreciate hearing about the experiences of masties and learning from your expertise so I can use that knowledge to better navigate my course through the mastie world, while continuing on the right path in the autonomic neurology world. I have learned so many things here, but most importantly that just because my tryptase is only 2.5 and skin biospy didn't show excessive mast cells doesn't mean I don't have abnormal mast cell activity.

I welcome your advice, expertise and experiences and appreciate your help.
Lyn

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Anaphylaxing on 02/05/12 at 16:23:37

Hope you're hanging in there Lyn,

as to your earlier Q, I had my family doc run the rule out carcinoid/pheochromocytoma testing as my local allergist had never seen anything like what I had and wasn't really interested in pursuing it,

my GP later ordered meds for me based on advice from the mast cell disease experts.

Ana 8-)

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Lisa on 02/06/12 at 06:07:30

You know Lyn, you say you´ve had this for years and seen plenty of doctors. My question is, when do you decide when that last T is crossed and the last I dotted? There comes a place where I think you can safely say you´ve dotted plenty and time to let an expert take over, don´t you?

I wish, oh how I wish, I could have bypassed all of this and gone straight to the top right from the beginning!!! OH HOW I WISH THAT!!!! I didn´t want to study all of this nor did I want to become my own investigator. I´m a professor and principal and my area is education and working with children and their parents, not medicine. If I could have save the tears, the frustration the money from the years of having to run around, without any other option but to run around I surely would have!! This work belongs to doctors, not us, even though it can be very stimulating and rewarding. If I knew then what I know now and had the financial ability to leave Brazil and go see Dr. Castells I´d be on the very next plane out of here!!!

There is only so much head bashing a person can take!!!!! I would think that you would have had enough of it too by now!!!

Lyn, if you have the means$$$ why would you continue insisting with the T and I dotting, it makes no sense to me when they can put the rest of those crossed and dots on there for you.

Sorry, but this is just my own opinion and I hope I don´t upset you with it. I´m sorry but I can´t help but get frustrated at times when I see how much easier it would be were I in the States and had the opportunity to go to the top!! I see so many of you all with these golden opportunities and some of you don´t have financial issues to deal with and yet you think it´s too far, or too much of a challenge or whatever and stay stuck in your vicious cycle running around with local or regional doctors insisting trying to make the machine work. It get hard to swallow a bit seeing such golden opportunities tossed out the door. Makes me feel sad.

It´s like being offered $50,000 dollars and only taking a $5.00 bill! Makes no sense to me!

Again, Lyn, I´m sorry, I´m not venting my feelings at you, it´sjust hard knowing I´d jump at the opportunity if I could. I had an appointment set up to see Dr. Castells in January and had to cancell it sadly. I just can´t get up there. Even then, I´d be paying in cash for her consult and no testing could possibly be done cause I can only afford to see her and that´s it, but OH, FOR JUST ONE HOUR WITH THAT WOMAN!!!!!!!!! She could move my case forward lightyears, at least that´s what my hope would be!!

So, please, reconsider still crossing Ts and dotting Is, for I think youre trying to reinvent the wheel - tons of work and often doesn´t work as well.

Lisa

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Joan on 02/06/12 at 10:37:16

Hi Lyn,

Even if your doctor is brilliant in his field, you're showing many signs of a mast cell disorder, and that's not his specialty. The situation is very clear and no other documentation than what you already have is necessary in order to see a mast cell specialist. They'll ask you the details they need to know.

In the past, you've felt as though you needed to research and self-diagnose when the medical community couldn't account for all your symptoms. But now you're past that point. If I were in your situation, I'd get my insurance referral and see a mast cell specialist as soon as possible, as Debbie recommended. It took far too long for most of us to be diagnosed, and one of purposes of this forum is for others to avoid that.

The experts will not only diagnose mast cell disorders, but also will tell patients which, if any, symptoms are probably not due to an MCD. You'll get a lot of information and can ask the all the questions you're thinking about researching when you see them. They will answer them as well as give you a treatment plan that should relieve many, if not all of your MC symptoms. It may need to be tweaked over time, but you'll be on your way.

As for lifestyle changes and learning to recognize food, medicine, and environmental triggers to help you stay well, that's an ongoing process, and it can change over time. Once you become aware of the basic lists of foods and meds to be avoided if you have MCAD and which are well-tolerated, you'll have a basis for figuring out how to feel good on a daily basis. We can help you a lot with tips on that process, but it's important to get the information that the experts have to offer you first.

Hope you don't think I'm being harsh. I'm not saying to go away, but rather step back, take a deep breath, and trust the experts. And, when you call for your appointment, or when your doc does, ask them what testing they'd like you to bring with you.

Good luck and let us know what happens!

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Doozlygirl on 02/06/12 at 15:45:31

Lisa, Thank you for your response. I can feel your passion through your choice of words.

Joan, I had an epiphany while reading your response. These experts will consult on my situation before having a local physician determine that I have a mast cell disorder???? They will direct my physician what tests I will need before the first appointment? These docs will diagnose mast cell disorders? This is so different from other experts at world class facilities.

I have read in several posts that a confirmed diagnosis of mast cell involvment is required prior to getting an appointment with one of these experts. Something about a letter coming out of B+W. Later posts state that strong suspicion of mast cell involvment will open that door. My medical records doesn't yet mention the words mast cell. I have significant medical issues and dozens of diagnosis that are likely related, but really vague. I have only had a minimally remarkable skin biopsy and a tryptase of 2.5 with no mast cell diagnsosis at this time. Is this really sufficient to get the attention of one of the world experts on this spectrum of mast disorders? I also read that I need to have a local physician willing to carry out their orders/recommendations and am not confident in the dermatologist I saw once.

I may be a bit cautious and am admittedly wired (hazard of having sympathetic overdrive :) ), since I spent months chasing down a different possible cause of my orthostatic symptoms. Two endocrinologists were quite confident I had a rare pancreatic tumor based off of multiple biochemistry markers taken during my episodes. One of these endocrinologists wrote a retrospective paper on 60 years of data collected by Mayo on this rare tumor, while she trained there. I was then referred to Mayo, and after waiting two months was denied because my medical records did not fully address their eligibilty criteria for this rare tumor. I was missing one detail that I was told could be rationed away in that paper written by that endo several years ago. This denial resonated with my insurance company who denied my request to cover my consult/testing at Mayo. I was devastated and it took a whle to get past that disappointment.

Interesting but this rare tumor type is on the differential diagnosis list of mast cell disorder! Based off of previous experience, I doubt I would have enough in my medical record to get the insurance referral at this time. Maybe will have enough after my next appointments over the next month???

Ok, guys, you have convinced me to rethink my approach. I see my neuro in 10 days. I hope he is receptive to serving as my conduit with these experts until I can come up with a local MD to carry out a treatment plan. Thanks for your advice. I really appreciate your time in helping me understand how to reach these experts.
Lyn

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Anaphylaxing on 02/06/12 at 16:06:58

Sounds like progress Lyn. If you can, I would try not worry about whether they'll see you as a suitable candidate. If they need more done to see you , they will tell you or your doctor. I agree with others in that you don't need to wait for that.

If it was me I would have my doc send them a consult for advice for your current situation/testing/treatment in the meantime, while working on getting in to see them yourself, if possible, which would obviously be ideal.

Hang in there! You are doing a good job trying to help yourself! 8-)

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Doozlygirl on 02/06/12 at 16:44:43

Thanks Ana. I really appreciate your kind words!
Lyn

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Lisa on 02/07/12 at 03:38:31

Lyn,

Again, please don´t take my passion incorrectly. My own challenges with my case isn´t the only thing that empassions me when trying to help others. It really upsets me how very hard it is for the great majority of us! If it were only the process of diagnosis which were so hard, perhaps that could be overlooked and understood, but its the fact that we go through so much stupidity and frustration and even abuse from doctors and the insurance process and all of the rest to even get treated!! It´s just not right!! And now, in your telling your story and your challenges, it can´t help but to infuriate any one of us!! It should have to be this way!!! You have no idea of what Ana went through at the Mayo and it makes me HOPPING MAD >:( (too bad this face doesn~t hop up and down!) to see this for IT´S WRONG!!!

You should not have to bear the emotional scars you do and neither should I! None of us should, but we do. This is why we try to help those who are still struggling to get a diagnosis go into the right directions. We´ve learned some things here and as a group, sharing amongst each other we´ve found some ways of short cutting all the grief. When there is a known local doctor who is up on the processes, we let everybody know, but when there isn´t then we also come right out and say it.

Yet, Lyn, there are some cases that we´ve learned are just more impossible than others. You´ve got one of those cases, dear. This is why you have us standing up trying to get you to hear us for we don´t normally talk so strong with others. You´ve been going around for YEARS, beating your head up against doctors and the entire process and it´s easy to see that you are battle fatigued and just at the end of your rope! Your continued hope for an answer is what carries you, but sometimes it just comes to the point where you´re ready to break down and quit and many of us here have been on the very edge of that.

This is why I spoke so strongly with you, not to give you a beating too, but to help you see what you do indeed have available to you and what you can do. Going to the Mayo would be just one HUGE MISTAKE and further disappointment, Lyn and thank goodness you didn´t get in there for they would never recognize your 2.5 tryptase!!

Lynn, I can assure you that if you were to write to Dr. Afrin, he would gladly take you on that 2.5 tryptase. I have no doubts!!! You would have trouble getting into Boston due their being overwhelmed. However, I think that if you were to personally write to Dr. Castells, she would indeed consider your case. Although they have their requirements, she knows that the 2.5 tryptase of yours indicates and well knows that you may not show other markers than that. She is who handles MCAS patients and with that trytpase of 2.5 you do show some MC activation. The tryptase is low because the MC burden is low, but the fact that it is above 1.0ng means there is some activation going on.

So, don´t lose hope or get discouraged, but be grateful that you did have that problem with your getting into Mayo.

In fact, rethinking this, it may be better to go to Dr. Afrin instead of Boston because Dr. Afrin is a hematologist. Your having shown signs of the carcinoid tumors and having had a suspicion in that area means you need to still rule them out. Since you couldn´t do this, you need to have this done prior to going to Boston. Dr. Afrin knows how to do this and look at MCAS. If he has any questions, he knows the right doctors to find answers with.

So, don´t get discouraged, we know how to help you and where to send you and those doctors who will finally cross the Ts and dot those Is once and for all!!! :)

Lyn, one last word....

You really are to be commended for all of your hard work!! You´ve learned a great deal about your body and how it´s functioning and what´s wrong. You´ve done an excellent job of trying to find the answers and you should be very proud of your success so far!! It´s taken tons of pushing and hard work and we know how hard it is, Lyn, so we also know how to recognize this in another who has gone this same route as we have!!! GOOD GIRL!!!! You really should be PROUD of YOURSELF!!

Hugs!

Lisa

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Joan on 02/07/12 at 15:08:02

Hi Lyn,

Yes, Dr. Afrin and Dr. Castells will both consult with you and/or your local physician about the possibility that you have a mast cell disorder. Depending on what you've had tested so far, they might ask for more testing prior to letting you make an appointment, or they may ask for it and let you make an appointment at the same time. Yes, they are experts at diagnosing MC disorders and do it every day. They'll also say that you don't have one if they don't think you do, but not until they're certain. Mast cells are what interest them. Mast cell disorders are their areas of expertise!

As for getting in to see one of the experts, they do have a protocol for getting in. There must be a strong suspicion of a mast cell disorder. Some MC docs require it to be systemic mastocytosis and will only see patients who are confirmed or very suspicious for it. Others are willing to see people with mast cell activation syndrome. In Boston, they have a form for potential new patients to fill out, or they will accept test results from a physician who refers a patient. Some people have emailed Dr. Castells and she's agreed to see them. What they're trying to avoid is people who take their time when there's no evidence at all that they have a MC problem.

The experts like you to have a doctor in your home area who can follow-up, write prescriptions, run routine tests, etc. It's much more convenient for the patient, too. I would hope that your neurologist will do that for you or be able to point you in the direction of a good internal medicine doc or allergist/immunologist locally who can help in that regard.

You don't have to go to a "world class" facility to find a "world class" doctor. (Although, Harvard and Brigham and Womens Hospital, where Dr. Castells practices, is considered to be a world class facility.) Even world class facilities can't have specialists in every rare disease. And some of us have seen doctors at world class facilities who weren't very good at diagnosing us, by my standards. I've seen doctors who were practicing obscurely in a small community who were brilliant and curious and who helped me a lot.

It's a relatively small group of doctors in the world who understand much about mast cells and MC disorders. This is changing now, since mast cells seem to be involved in some way in a number of other syndromes and disease processes, such as interstitial cystitis, MS, autism, and more.

Believe me, I understand what you've been and are going through on the most personal level, as I've been through the exact same things, for 16 years from severe onset to diagnosis finally 3 years ago.

I don't know if you saw FutureHope's post, but she emailed Dr. Afrin with her situation, and he welcomed her to begin the process of getting an appointment. This meant contacting his office and sending her test results from the last year, to begin. No reason to wait 10 days. Why not just email him tomorrow? The preliminary info he gives you may be enough ammunition to get your insurance company to let you see him.

Keep on going! You're almost there!

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Doozlygirl on 02/09/12 at 06:59:36

Thank you everyone for the explanations, guidance, kind words, and support. I really appreciate it. I would have sent this message sooner, but had a significant crash yesterday, which took me down most of the day, hours, then in a groggy drunk state the rest of the day. Today, I feel hung over. Before then, I began to pull my medical records together and began drafting an email letter to Dr Afrin, which had to stop when I crashed.

I don't even have a mast cell diagnosis yet, I feel at peace for the first time in a long time, because I can actually see a glimmer of light at the end of this tunnel now. So much makes sense now.

And all of you helped get me there. Ana, you are so encouraging and supportive. Joan, you have such a calming simple way of coming back around and filling in the blanks, which got me to rethink my approach. Lisa, those documents you sent were so helpful in clearing up some confusion for me and I learned so much on your posts on the political side of how these disorders came to be was especially insightful.

After ruminating on all that, I could finally see the forest through the trees. I now have a plan!!!
With appreciation,
Lyn

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Joan on 02/09/12 at 08:53:36

That's great! Everyone here is always happy when someone feels better from having been on here. We're lucky to have many perspectives on this forum. While the meds are very similar, other things people do to feel better vary a lot. Sorry you had a bad day, though. Let us know how you're doing and if you get an appointment.

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Anaphylaxing on 02/09/12 at 09:21:59

Yahoo! A plan is key! You are to be commended for taking the time to find the site and fight for your health!

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Doozlygirl on 02/10/12 at 18:31:46

I've been horizontal since Wednesday afternoon, but did accomplish one major task. I drafted and sent an email to Dr Afrin this evening. Thank you to everyone with the gentle prodding and needed smacks up side my head. :) I guess I have tolerated so much for so long that I couldn't see the forest through the trees. We'll see if he responds and what he says. Will post when I hear back.

Back to simple foods, eating rice, rice and more rice, oatmeal and almond milk, then switched it up tonight beef tenderloin, peas and potatoes. So far so good......

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Anaphylaxing on 02/11/12 at 10:48:44

sorry you're worse, but glad you sent the email. Keep us posted!

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Doozlygirl on 02/11/12 at 11:44:31

Dr Afrin responded to my email!!!! While he acknowledged that he can't render a diagnosis through email, he did state that my story absolutely warrented investigation by a mast cell specialist. I will be calling for an appointment on Monday and getting referral from my autonomic neurologist on Thursday. I will be providing many of the documents you have all shared. THANK YOU for your guidance!

Lyn

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Anaphylaxing on 02/11/12 at 13:37:47

Yahooooooooooooooo

SO happy for you

Hope your course toward recovery is a speedy one

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Joan on 02/11/12 at 17:41:54

Yeaaaaa! Isn't it nice to be believed and acknowledged?!! So glad you're going to be feeling better soon!

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by missybean on 02/13/12 at 15:33:36

Lyn, welcome to the group. I have TMEP just like Cindy. When you said dialated blood vessels, my ears perked up... Or I should say my eyes opened wider. Lol! TMEP is a sub type of UP. TMEP stands for Telangiectasia macularis eruptiva perstans. Telangeictasia's are small dialated blood vessels. TMEP is a hard diagnoses becauses many times there is only a slight increase in mast cells, so many times it is given as a differential diagnoses and clinical correlation is necessary. I would look into TMEP. I would also get a copy of your pathology report from the skin biopsy. I saw a university doc who told me I had a slight increase in mast cells and increased dialated vessels, but he told me it was telangiectasia's(dialated vessels) which he said was caused by heat and he told me the flushing,diarrhea, hives, joint pain, reflux, and all the food sensitivities had nothing to do with the spots and to eat whatever I want. Two months later within a two week period I got 2 new patches of hyper pigmentation and like 30 new mole like freckles spots, this was in the middle of winter. I got a second opinion and she confirmed my suspicion and even said it says on your path report a differential diagnoses of TMEP and how clinical correlation was necessary. I provided all the clinical correlation necessary, he just didn't wanna listen or maybe he just didn't know better. I also went back to the university to see a different dermatologist who has a knowledge of mastocytosis and she agreed with the diagnoses of TMEP. I tell you a this because TMEP is rare and hardly seen by most docs and it can be easily missed or overlooked. I Have different looking spots, some are more like freckles and moles and others are more of a splotchy red hive like spots that never fully go away, some days they are slightly there and other days my chest and neck and arms are flushed and splotchy but it does not itch. I do get heat hives and those itch.
Sorry this is so long but I just wanted to tell my story a little. It's very frustrating when you know something is wrong and doctors are telling you nothing is. What do your spots look like? There is more info on TMEP if you wanna read it, it titled TMEP info and it is under the general category and it's probably back a few pages.

Melissa

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by MCADmama on 02/14/12 at 09:52:20

Lyn,
Welcome, and I have been following your story with interest (you are an amazing lady who’s done a great job pinning down possible diagnoses!), because I have POTS and probable MCAS/D and am in the stage of pinning down a diagnosis also. I too have largely self-diagnosed the MCD, finding info online and bringing the idea up with my docs, who then decided with test results that yes, this might be it... I'm waiting to see what the doctor writes in her report now that the labs are in. I also plan to contact Afrin or Castells - I am in Colorado, and we have noone here who is an expert either; I have a good GP and seemingly a good allergist/immunologist (so far), but I don’t think either one will give me an MCAS diagnosis without support of one of the experts because they just don't know enough on this topic. The only reason I’ve waited to contact the experts myself is concerns about medical insurance covering it, but it is now time for me to contact the insurance company and find out what would be needed. I also can’t decide whether I should contact Afrin or Castells… I hear good things about both of them!

I noticed you asked a couple questions a few posts back that noone answered. I’ll tell you what I know/think (realize I'm not a medical doctor) and hopefully others will correct me if I’m wrong!:

1) med for severe menstrual cramping. Let’s assume you have MCD, and if so, then NSAIDS aren’t good. But I believe Tylenol might be OK since it’s not an NSAID.

2) re: supplements. I have been tempted to start on a bunch of supplements too - - I bought quercetin, and pulled out my magnesium, vit D, vit C, multi vit/mineral. But we are so reactive that even this can screw up our system, as I found out, so everything needs to go slow. I have not gone back to taking Vit c because the first time it semed I reacted to it (I’ll try again sometime soon), I have not tried the quercetin pure powder yet (both of those are considered mast cell stabilizers), but I have been able to take a multi-vit/mineral from the health food store that contains no artificial dyes (I think many of us are sensitive to artificial food and med colorings), and I take Carlson’s Vit D drops because many of us show very low vit D levels (I see you must too based on the IU you’re taking – another sign you fit MCDs). Totally anecdotal, but vit D may have helped my hyper-scent sensitivity to partially abate - - I had gone off my D and started being unable to tolerate any smells, then got back on it, and much less sensitive then - - there is some connection between vit D and the olfactory sense in the literature, although that is usually a restoration of smell in those who had lost that sense. I take magnesium occasionally, as it helps my tachcardia/BP problems as long as I take it in moderation. I get potassium from bananas, and for now I’m ignoring calcium but probably need to take some eventually.

3) N Mehtylhistamine and prostaglandin test are 24 hour urine collection not blood tests. My understanding is that you need a lab that understands how to handle the sample, as that can be screwed up, but your allergist/immunologist should be able to find out if the lab is able to do those. I just got back results showing my n methylhistamine was very high, even though my prostaglandin was normal, and my blood tryptase was considered normal at something like 4 or 5 (I’d have to look it up). My local doc wasn’t willing to diagnose MCAS based on that, but I think I fit the bill perfectly and expect one of the experts to give me that diagnosis (I’ve had all the other stuff ruled out). And yes, it is best to do all those tests when you are episodic if at all possible. In MCAS as I understand it, tryptase can be normal at baselline, but elevated to max level only at 15-90 minutes after an episode (part of the reason it’s hard to catch - - in mastocytosis my understanding is that it is usually elevated all the time). The urine-measured mediators will also be elevated more around the time of an episode, but are not so short-lived I believe.

4) You said you don’t have POTS? :-? Is that because you don’t have tachycardia consistently on standing? Because I don’t either, just some of the time, and my BP can be all over the board when I’m orthostatic or supine (drops after eating, gets high in the middle of the night, or whacks between those extremes rapidly sometimes), and I can get tachycardic but also bradycardic at times. My most common pattern is postural/standing tachycardia and postprandial BP drops, but my understanding is that those of us with the hyperadrenergic type of POTS that tends to go along with the MCAS tend not to fit the classic diagnostic criteria on TTT, etc. I’m curious why they decided you have another kind of autonomic neuropathy? I never had a firm diagnosis on hyperadrenergic POTS either - - I was given the labels “hyperadrenergic” and “POTS” separately, so just have made the assumption they go together. Maybe someday I’ll do the tests.

5) You said you were on bioidentical progesterone cream - - just an FYI, both bioidentical estrogen pills (compounding pharamacy) and bioidentical progesterone cream made my MCAS/POTS symptoms worse :o (I finally started realizing that what I thought were menopausal hot flashes were actually MCAS hot flushes!), and my new doc says it is tricky to treat hormone imbalances without screwing up other things. Don’t know if that’s a factor for you or others, as we are all different, but just thought I’d note that.

I will be anxious to hear how it goes with Afrin – good luck with that! So glad I found this place (and the yahoo groups and dinet) too - - aren’t these women (Ana, Lisa, Joan, Julie, others I’m forgetting to mention here) a wonderful form of support and source of info?! :)

P.S. Go slooooooooooooooooooooowww with any changes - - meds, foods, supplements. I didn't know that until someone on one of these forums warned me, and now that I've slowed it down (I was in too big a hurry to expand my meds/foods/supplements) and de-stressed some mentally, my recovery has been going better with more stability ... although I still have a long way to go. I just picked up cromolyn sodium (generic Gastrocom) from the pharmacy today and am trying to screw up enough courage to give it a try! (realizing it will take weeks to help, if it does, but I'm just worried about an anaphylactic reaction).
Carol

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Anaphylaxing on 02/14/12 at 11:23:15

Great post Carol, I agree with everything you said!

just wanted to pipe in that for cramps I always found (when well)that ibuprofen worked and tylenol didn't....

Since being sick, I've just been fighting through them without meds and if I were to try, I 8-) agree it would be Tylenol first.

BUT, I just wondered it this might indicate that I'd be one of those who'd benefit from aspirin or prostaglandin inhibitors

In any case I'm not rocking the boat with my own case by trying anything but just wanted to share my thoughts since it came up!

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by MCAS and POTSMama on 02/14/12 at 16:58:07

Thanks, Ana. Boy did I have a lot of typos in that post -- brain fog/poor editing.
Yes, tylenol never worked well for me for cramps either (it's never done much for me for any pain), but I figured it was better than nothing if it's tolerable. I have only taken a small dose of Imitrex for the beginning of a migraine since the MCAS hit, and I did OK with that.
Carol

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Doozlygirl on 02/14/12 at 18:31:12

Melissa,
Thanks for your post with details on TMEP. I looked it up a while back on Google and found very little. Will look up posts on here. Hope to get path report soon.

I have lots of spots.
*50 or so brownish freckle-looking spots localized on my upper thigh, which get darker at times.
*bumps on top of hands=red when flushing, some look like clusters of oatmeal and alternate between faint brown and red. When red, it tends to be itchy.
*tiny, white puss filled pimples along hairline and along scarline (had brain surgery 10 years ago with massive scar from ear to ear across top of head)
*larger filled puss boil like lesions near ears. Get every two or three months.
*bright red splotches on neck
*tiny red dots (faint but blood red) polka dots along legs and on torso.
*adult acne, but I feel it is not typical adult acne.

Thanks so much for your post.

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Joan on 02/15/12 at 06:03:04

Have the spots on your hands been biopsied to check for UP?

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Anaphylaxing on 02/15/12 at 09:56:04

I agree with Joan, It definitely sounds like you need a good dermatologist to examine you and perhaps biopsy some regions.

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Doozlygirl on 02/29/12 at 20:47:45

Hi Melissa,
I wanted to respond to your post, but waited until I got the path report of my skin biospy of my red blotchy chest , which showed telangiesctasia with sparse superficial perivascular inflammation containing lymphocytes, histiocytes, and rare plasma cells. They did a Giemsa stain which showed infrequent scattered mast cells, that are the minority of inflammatory cells. It goes on to say not specific, but could be essential telangiectasia. There is a very rare single eosinophil in numerous sections, stating it could be acute urticaria, and not likely chronic urticaria. It goes on to say infrequent mast cells and the pathologist does not believe this is TMEP or UP.

Clinically, I have been flushing and having these red splotches for 28 years, so when the last lines read should be interpreted with consideration of clinical setting. My derm appointment is Friday. Your clinical description seems like mine, so I'll definitely keep this in mind. Working on getting to a mast cell expert.
Thanks so much, Lyn

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Doozlygirl on 02/29/12 at 21:28:30

Carol,
I am soooo sorry it has taken me so long to respond to your post. i hope you have been able to make progress since writing this. I appreciate all the guidance and support from these sites, but am finding it very hard to keep up. Hense, why I am unable to work at this time. Just too many episodes to manage in order to have a decent full life. i relly appreciate your thorough response. I am now able to sit down and absorb everything you wrote.

I guess the reason i didn't get the POTS diagnosis is I don't have the consistent tachy, and my TTT only showed a 20 point increase. Now that I have resolved my hypovolemia issues, I have much less orthostatic issues on a daily basis, but get it during my episodes. Prior to diagnosis, I had horrible metomenorrhagia for 2 years. Bioidentical progesterone at the right dose was a godsend for me. I also have reactive hypoglycemia and post prandial orthostatic hypotension, and when I am in an episode, I have sitting orthostatic hypertension as high as 210/110 but usually at 170/100 which is horrible when it goes to 88/66 upon standing. No wonder my body crashes!! before i forget, my TTT, QSART, valsalva and TST were all abnormal. That's what landed me the diagnosis of autonomic neuropathy.

I wanted to ask, can you give me an idea of the costs for generic gastrocrom? I see there is some kind of rebate program offerend on the TMS website and wondered how the costs compare. Thanks so much and I wish you ongoing progress.
Lyn

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by MCAS and POTSMama on 03/01/12 at 07:38:02

Lyn,
No problem taking so long to respond - - I haven't been on any of my groups or forums this past couple weeks because I've been trying to get back to work, and with taking care of the kids (and my husband now traveling more for work), I crash when I get home and barely have energy just to do what I have to. So I'm pretty spotty on responses too, but got notified of this one as I was following the topic.

I don't know exactly what generic cromolyn sodium costs - - I was surprised (albeit glad) to find out that my medical insurance covers it with just a $15 copay. We are thinking of switching to my husband's insurance if I cut back my work hours (which I may have to since I'm having great trouble with reactions to the building my office is in), and I need to find out if they will still cover it - - my pharmacist says some insurance companies will cover it and some won't. I believe he said that if I had to pay for this myself, it would be something like $500/6 weeks! So if I didn't have insurance to cover it and needed it, I'd most likely see if it's affordable to buy direct from the Bellevue, Washington compounding pharmacy - although I'm in Colorado, someone on here told me that you can get it shipped to you from them for much lower cost (although you still need a prescription).

I haven't been on it yet - it's sitting on my kitchen counter and every time I start to think it's the right time to try it, I am having a flare, or too busy the next day to take a chance, or whatever. I've become so shell-shocked at trying new meds, that I admit I'm afraid of it. Although I doubt I will have a reaction because I've successfully used NasalCrom (over the counter) as a throat spray 4 times a day, which my first allergist suggested. Hmmm, come to think of it, since I stopped doing the NasalCrom I've felt worse. I think I better get started on the generic Gastrocrom this weekend as I'm told it takes 3 to 4 weeks to kick in.

A quick note on POTS - - someone on here can correct me if I'm wrong, but I think the TTT with POTS is a bit like the mediator testing for MCAS... if you're not symptomatic that day it won't show it. I am like that - - sometimes I get major tachycardia just standing up and sometimes I don't get any tachycardia for months on end (notably, I haven't had it since I've been on the antihistamines for MCAS). So my thought is that if you do the TTT on a day when you're less symptomatic, that doesn't necessarily mean you don't have POTS. Convincing a doctor of that is another matter, I suppose, and since you'll be treated the same whether it's a generic "dysutonomia" or "POTS", it doesn't really matter. But my understanding is that there appears to be a higher incidence of MCAS in POTS patients.

Hope you're doing better! I am about the same. I had a few weeks of relative normality and feeling much better, but the past two days for no reason I can discern, all my worst symptoms are kicking in again! I was feeling almost confident for awhile that I was beating this thing, but I am rather depressed today that it seems to have flared badly. The worst thing for me with this disease is the unpredictability. If I just knew I was going to be BAD, I'd apply for disability and be done with it, and if I just knew it was going to manageable most of the time, I'd not fear going back to work full time and making some other plans. But it's this one day I'm OK and the next I'm not (without a clear trigger -- although I'm wondering if not enough sleep is a factor as I haven't been getting enough the past week due to circumstances beyond my control including a child with the flu), ACK. The unpredictability is just a darn hard way to live! :(

Sorry to complain - - I know I have much to be thankful for... but I know that people on this forum will understand the need to complain sometimes! [smiley=dankk2.gif] Thanks everyone for being here - - this forum has been helpful for support and information.
Carol

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Doozlygirl on 03/23/12 at 12:38:09

I learned today that Dr Afrin has given me an appointment in Mid May. YIPEE!!! My referral was officially sent earlier this week. So from referral to appointment, his wait times are about 8 weeks.

I am currently taking:
Morning-
cetirizine 10 mg
famitodine 20 mg (issues with red dye in ranitidineZantac)

At night -
fexofenodine 180 mg
famitidine 20 mg
Singulair 10mg

cetirazine and famidotine for breakthorugh symptoms throughout the day.

This week, reacted pretty quickly to yellow and red dye. Doing a better job of eliminating both from my diet, meds and products.

Any other thoughts? Stocked up on plenty of AH choices. Hayfever has definitley contributed to my full bucket.

Thanks everyone, Lyn

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Anaphylaxing on 03/23/12 at 14:21:38

Yahooooo Lyn! So happy for you!

Glad you're sorting out some triggers

How are you approaching your diet and are you noticing any triggers?

Are you improving at all?

Hope so!

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by MCAS and POTSMama on 03/23/12 at 16:01:18

Lyn,
That's good news that you got in so quickly (that seems quick to me - - I couldn't even get in the first time to see my allergist here for over 2 months). I'll be anxious to hear how your appointment goes, so please do post when you return. I am doing better since my last "whining" post (sorry about that!). I'm continuing to work, and finding it easier to take care of the kids and everything else on my plate than I was a couple months ago. And I'm having fewer episodes of the more severe symptoms (like throat tightening and blood pressure drops or tachycardia, or sudden D and abdominal pain), although I still am on a very limited diet and for some reason have been having migraines again. Since I'm doing better, I've held off on contacting Castells or Afrin but I'm holding that in reserve because I can't be sure I'm going to keep getting better and not relapse - - hence, I'd like to know how it goes for you in that appointment. Good luck - hopefully he can get you on track!

I did get my local allergist's report. Here's the gist of the parts about test results and diagnosis:
"Her interleukin 4 and 5 labs are normal. She does have elevated tumor necrosis factor (TNF alpha). She also has elevated (about 6 times the upper limit of normal) urine N methylhistamine (24 hr) evaluated within 24 hours of an anapylaxis like episode. Her KIT mutation study is normal. Her CBC is grossly normal and her IgE is only mildly elevated. The blood cells and flow cytometry are normal. "
"I do not see any signs of clonality in the peripheral blood, but obviously that would not be as exclusive as a bone marrow biopsy."
(but she says in the report that she doesn't think that's necessary since my symptoms are responding to antihistamine therapy).
She concludes that based on the elevated N methylhistamine and TNF alpha, the results are "suggestive of a mast cell activation syndrome". So she wouldn't go all out and diagnose it, but close enough for now I guess. I fit the WHO criteria for MCAS anyway.

I still am not steadily on the cromolyn sodium - I tried it a couple times for a few days and had some serious vertigo for a day or so both times, but can't be sure it was that since I can get vertigo at times anyway. But my husband is out of the country on business, so I'm waiting until he returns to try it again, chicken that I am.
Carol

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Anaphylaxing on 03/23/12 at 18:00:42

Carol

SO glad to hear you are having small improvements! I hope your diet advances soon too!

Ana

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Doozlygirl on 03/23/12 at 19:30:15

Thanks Ana,
I am still flushed 80 percent of the time, but have been able to leave the house several days in a row. So I am making progress! Started singulair last week and eliminated meds with azo dyes, which I attribute my progress. Under Triggers, I posted a bit about my birthday cake revelation.

I am rotating my diet, and don't eat the same thing more than two meals in a row. Am eating foods I haven't had for a while, like red grapes, kiwi, and cantelope. I made an awesome dip with avacado, onion, serano, feta, olive oil, fresh cillantro, and a dollop of sour cream that went really well with celery sticks.

My flushing occurs all the time, and best I can tell isn't triggered by fresh homeade food. I do seriously react to packaged foods, MSG, dyes. Gonna give it a few more days before I try tracking down cause of flushing.

Thanks for asking. Take care, Lyn

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by Doozlygirl on 03/23/12 at 19:55:31

Carol,
I know, I was floored at the turnaround time! I've already had to wait 6 months to see my own autonomic neurologist.

No worries. I don't believe any of us whine, we vent! :) Funny thing, my migraines stopped since starting AH. And so did my horrible cramping, and heavy monthly bleeding. Go figure. Not sure if this will continue, but definitely appreciate the reprieve!

What the he# is an "anaphylactic like" episode? Doesn't the 6x elevated methylhistamine define anaphylaxis????? Any idea what elevated your IgE? Do you have any known allergies? And yah, your labs do fit the MCAS diagnosis. Wonder why she didn't stick the landing? All the hard work is done. You met the criteria. No guessing here?!?

And re: starting up cromolyn, your not chicken, your just smart waiting til your husband returns. Joan and Lynda have written several posts on slowly starting up the cromolyn. If you havent seen them, maybe it'll be worth a search. Good luck.

Thanks for the response, Lyn

Title: Re: Newbie with Dysautonomia and anaphylaxis. Suspect MCAD
Post by MCAS and POTSMama on 03/27/12 at 18:42:55

Lyn,
Thanks for the support. "Venting" instead of "Whining" - I like it!

Yes, I thought that "anaphylaxis like" was odd too - - but I think the doc meant that I didn't have edema, hives, or a consistently dropping BP (I was volatile BP/pulse, fluctuating between high and low). My symptoms in an episode are usually flushing hot then feeling very cold, light headedness, volatile BP/pulse, feeling like my throat is clothing and a tight chest/trouble breathing. But I now know that anaphylaxis can have a quite different presentation (and even below level) in us mast cell disordered people.

Re: the mildly elevated IgE - it was when my first allergist tested it a couple months earlier too, and my blood work a couple months before that showed excessive inflammation. So it's possible a conventional allergy is going on along with the mast cell disorder, but I'm not sure to what.

As an update my migraines have stopped again fortunately - - it may have been a hormonal thing as I'm in menopause (nearly done, I think). Tried cromolyn again and had a milder vertigo attack, so am still holding off a bit longer to re-try and titrate up. I'm still in a holding pattern of doing better with the H1/H2 (Allegra, Atarax, Zantac) and Singulair anyway, so not going to rock the boat yet, but sure do want to eat more than the 6 foods I now can tolerate.

Here's rooting for you, me and Ana (and anyone else in this acute illness phase) to get well quick!
Carol