Mcad Question.

[Maiysa]

H All. I tried to ask this question but didn't get a response. Trying a different way to word it. The allergist said that it doesn't sound like I have MCAD but agreed to do at least a Tryptase blood test. I just got the results back and he said that yes, that I have tryptase but it was only 1 number above normal and that a person has to have extremely high levels to be positive for MCAD. Is there another way to test for this? Or is that it for testing for MCAD? Every time I get slightly out of balanced, hungry, tired, having allergies or dehydrated, flu or cold etc. I start flushing all over or feel like every nerve is vibrating. I mostly flush after eating. And I get an intense feeling of fight or flight and start to sweat which can last for hours, which is not normal since I have autonomic neuropathy and basically can't sweat. But since it's winter, I do much better with this. I don't know what it is. Any MCAD advise on getting a diagnosis? Or am I off the mark here? Thank you.

[juliegee]

Maiysa-

Sorry, yeah- I saw your previous post & wasn't sure how to answer. Your posing the question a different way helps me to better see where you are on your journey to a DX. Your doctor, like many, doesn't seem to know much about MCAD. Many of us have to see mast cell researchers/specialists to get an adequate DX.

An elevated serum tryptase level is NOT necessary for a DX of MCAD. It IS, however, indicative of mastocytosis, another mast cell disorder. In mastocytosis, the patient has too many mast cells. In MCAD, the patient has a normal amount of mast cells, they are just overly reactive. Dr. Cem Akin (Brigham & Women's), the leading mastocytosis researcher in the US, believes that even a slightly elevated level of serum tryptase, should be taken quite seriously as it could be the beginning sign of true mastocytosis.

You need more testing. This abnormal lab should NOT be ignored as mast cell disorders (mastocytosis & MCAD) can be quite dangerous if left untreated. Your symptoms are also indicative of a mast cell disorder. WHAT meds are you currently using?

If you tell me where you are located, I will try to recommend a good mast cell doc near you.

All the best-

Julie

[Clairefmartin]

I'm intrested in this as well - and thanks again Julie, you were very helpful in an MCAD post question I had previously. I just saw the allergist, and he said my symptoms sounded like something MCAD/Mastocytosis related, so I'm getting a whole panel of blood work testing my IgE levels for foods, and a 24 hour histamine/creatinine, Tryptase level, and CBC with differential. I have to look up what all this means.

I was interested to see that the doc circled dysautonomia, food allergy, allergic rhinitis, Urticaria (I have no clue what that is), and Mastocytosis on the diagnosis section.

He was at Mayo previously, so was very knowlegable about POTS/Dys (thank God!), I really liked him and am hopeful.

Anyways, hope you find some answers, I am out there searching too!

[potsmomma]

Maiysa, Julie explained that very well. What is your actual tryptase level? I know a lot people who have been diagnosed with Mast cell disorders who have tryptase as low as 3. Mine is 4.6 and I have a diagnosis of mast cell activation sydrome. What many doctors consider abnormal is a tryptase above 20...but that seems to be outdated information and usually only applies when considering mastocytosis.

[juliegee]

Claire-

VERY interesting. My local allergist trained at Mayo as well in MN. I also feel very lucky having such a wonderful expert so close to me. Mayo doesn't quite buy into MCAD, but with my obvious clinical evidence, I have ALWAYS been treated very appropriately.

Your doc sounds very thorough. He is working you up for mastocytosis. MCAD doesn't have an ICD code, so that could explain his premature DX. Do you have elevated IgE? If so, THAT is indicative of traditional allergies. Do you have any known ones?

Regardless, I am very happy that you are in good hands. With your strong clinical picture, you need a good doc.

Hugs-

Julie

[Maiysa]

OH Thank you for your replies. Yes, Julie that information was very helpful. I'm outside of the Las Vegas area. I go to Mayo in Phoenix for dysautonomia when I can afford it. Our insurance doesn't cover it, but Dr. Goodman is wonderful about having my doctors at home do the tests for him. Anyhow the normal levels on the Tryptase blood test had normal listed as 1-10 and my tryptase result was 11, so he said since it was only slightly elevated it meant nothing. So he took that off of the table. He said we can come up with all sorts of names for what you have, but we just need to treat the worst symptom right now and for me that day was pain. So he is ordering some pain meds...not sure how that will go since I can't take Aleve or even Pepto Bismol without flushing and blacking out. Anyhow, I don't know where to go to get better testing. I have a really hard time traveling, my immune system goes on high alert and I black out and have seizures so I can't travel for more than a few hours. What about California....anything there? Thank you all so much for your help.

[juliegee]

Your test norms are different from most, BUT slightly elevated DOES mean something. You need more testing, especially with your symptoms.

Bone pain is a common MCA symptom. Before I started my MCAD med regimen, my pain was off the chart. The best pain reliever (when tylenol isn't enough) is fentanyl. It won't cause mast cell degranulation like all of the other narcotic pain meds.

Here is a link from a mast cell disorder forum that discusses west coast docs: http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1293915621

Hope it helps-

Julie

[issie]

I'm going to post about my appt. today with Dr. Lewis at Mayo, AZ. about MCAD. Look for my conclusions and his.

[bensman]

I have been wondering about the tryptase levels as well. I have had mine tested 3 times. The first 2 times mine was a 4 with reference range of 2-10. The 3rd time (by my mast cell doc) it was a 6.2 with normal range of 0.4-10.9. But I always notice people posting about not having SM because their level isn't above 20.

Maiysa ~ Even though my tryptase is "normal" I have MCAD. I flush quite often. I hope you can find a doctor close to you that is helpful. I ended up having to travel quite a distance to get proper testing and diagnosis. Best of luck.

Kate

[Katybug]

Maiysa,

I just found these videos last night. 4 of the nations leading MCAD experts talk about mast cell disorders frankly and in clear terms. They take less than 20 mins. to watch. Hope these help you and maybe you can show them to your doc.

[Katybug]

Sorry technical difficulties...Parts 1 here and part 2 in next post....

[Katybug]

Part 2

[Maiysa]

Thank you very much Kate, Katybug, Issie and Julie. Thank you for the videos Katybug-very informative. Issie, I will look for your post. If they have a doc at Mayo in Scottsdale that would be very helpful. Also, Julie, I'm sorry I didn't answer your questions fully. I do have some allergies, but I know most of them and do my best to avoid the triggers. Also, I did go into anaphlyaxic shock twice in 2006 and had hives & erythema nodosum from my ankles to my temporal lobes for a long time after. I was told I was allergic to a fungal infection in my lungs. And since then my immune system has never been the same-my life changed over night. I am not on any meds except thyroid. I have just worked my way up to children's ibuprofen. I flush and black out with most medications. Even Gas X. Silly but true or else I get over amped from them and start shaking, once my lip swelled from nasal spray-Flonase. I was thinking about what you said about non narcotic pain killers. Do they affect MCAD or is it just to be safe and take non narcotic? It's weird but after my thyroid surgery they gave me demerol, I had taken this many times before with no problems, but this happened....my muscles froze and I stiffened up and I was yelling for help and then everything went black. It was so scary. They injected something in me and I don't know what it was but it made symptoms stop instantly. Was I allergic..or was it just a strange reaction due to the autonomic neuropathy? Anyhow, they said, you are allergic to demerol and don't ever take it again. And now just all medications do the same. Hmmmm...Anyone have this? Sorry so many questions.

[Katybug]

One of the things you said stuck out to me about your tryptase test vs. what the docs said in the videos. If I am correct, these docs said you have to take a baseline tryptase (when the person is not acutely symptomatic) and then catch one within 4 hrs. of an acute attack and compare the two results for each individual. It doesn't sound like that's how your doc used the test. I wonder if you can find a protocol for this that you can give to your doc?

[Maiysa]

Yeah, Katie thanks for pointing that out. That's a good observation I think I just need to go to a specialist. This doctor didn't seem like he wanted to get into the MCAD thing. I see there is a specialist in California. We live in Nevada, so maybe I could try to get in there. It sounds like it's a lot of complicated testing for a doc who doesn't want to deal with it. Can someone tell me what an acute attack would entail? It seems that my immune system just keeps going on fight or flight they are calling it. But it's weird when I get my monthly cycle, I get a rash in my pelvis area and thighs. I get violently ill. I swear I'm allergic to my own hormones. Sorry if that is TMI. When we stayed in California a few months ago, the smog was very high, and my face swelled up terribly and I went into some violent reaction of vomiting and lots of bathroom breaks. I begged my husband to take me to the hospital. But of course after 5 hours it passed. This does happen from now and then. Next time I will just go to the ER and ask them to do a tryptase test or something. I find it hard to ask doctors to do a test, I feel they think I'm stepping on their toes or something. Thanks Katie.

[Katybug]

I don't think its weird at all to think your body reacts badly to your own hormones. All of my symptoms, from whatever disease we end up calling it, were worse when I would get my period and even on Nuvaring (which contains estrogen). I talked to my Ob/Gyn and told her that unless she had a really good reason I wanted to go back on DepoProvera shots...no periods and no estrogen with that. I felt a change in my body (for the better) within 3 days of getting my 1st shot.

[Maiysa]

Oh, I'm so relieved to hear I'm not the only one who reacts badly to my own hormones. It's a terrible feeling. But sorry for you too. I recently did a progesterone insert (Crinone) to help stop my cycle and it helped so much. It's been a few months...knock on wood. I hope they are gone for good. With periods, I'm sick for weeks after, my body goes into over drive. It feels like very cell in my body is vibrating, like an on button has been turned on and won't shut off. I get so dehydrated, nauseated and just plain sick. But I love the Crinone-progesterone insert, but I read that the company is going broke. I called the local compound pharmacy and they told me they could make up a dose of it for me. But hopefully I don't need it anymore. I'm holding my breath that they are gone. I tried the Nuvaring and it was a bit much for me. Glad the Depro worked for you.

[anaphylaxing]

Maiysa

I can relate to so much of what you said. I had anaphylaxis 7 months ago and my immune system has been hyper since. I flush after/with every meal, heat, and anxiety. My tryptase is within normal limits. I was sent to M@yo, MN but did not have great success there as I was not mastocytosis.

My life, too, changed overnight. I've also developed POTS and medication allergies. More details on my blog.

Anyway, it's key to get you seeing someone about it as you definitely sound like you could have MCAD. They, first need to rule out pheochromocytoma and carcinoid syndrome.

Then trying H-1 and H-2 blockers and maybe mast cell stabilizers to see if you improve would be reasonable

Keep us posted! Good Luck!

Ana

[anaphylaxing]

p.s. I forgot to mention my symptoms also flare with my cycle

worse reactions, tachycardia, nausea etc

[Maiysa]

Wow, that is incredible that you have the same situation. I have to tell you when I first got sick, I was flushing so much after meals too and I developed dumping syndrome. It was terrible. I am 5'6 and at the time weighed about 128 pounds at the time, but after the anaphylaxis I was weighing in at 110 for a few years after. I looked like a skeleton. Could not stand up without blacking out or make it up the stairs. It ended up being a terrible lung infection for two years... and once we go that under control the POTS got better and my diagnosis was taken down to orthostatic intolerance but I was still a mess. Then I had thyroid cancer and toxic thyroid, probably left over from the lung infection and now autonomic neuropathy with crazy fluctuations in my blood pressure, especially in the summer months. ANd it all started with some hives. I'm really grateful to be here today. IT's a miracle. I hope they can find what is causing your situation. I will look into those other diagnosis. I know Mayo in Arizona did a lot of cancer checks. The carcinoma syndrome sounds familiar but am not aware of the other one.

Happy Holidays and I hope you feel well!

[POTSMama]

Ana,

I finally had a chance to read your blog. Wow are we similar. Active women then have an anaphylactic reaction then become seemingly pseudo allergic to everything (foods, gasoline fumes, etc) with unpredictable reactions that make it hard to get our lives back. My symptoms during an attack are so much like your description right down to the dry mouth, tight chest, low BP, and even shaking during a bad one. As far as anxiety, I mean who wouldn't be with this happening, so I get irritated when the doctors mention that.

Two questions - - how were you diagnosed with AI? (I believe I'm hyper pots and wonder about that). And do you think the Gastrocrom and Ketotifin are helpful? I'm going to see a new allergist/immunologist in a few weeks and get a second opinion because my current allergist doesn't seem to be taking me seriously, and I am still quite a mess. Spent Christmas today hiding from smells and loud sounds my kids were making in excitement and watched everyone else eat a special muffin breakfast, and big dinner - - I stuck with chicken, rice, rice cereal, and steamed broccoli, and had a bad reaction for hours anyway. I am so dispirited some days. And in two days I am supposed to return to work... quite worried about how I'm going to handle that...

Carol