Diagnosed With Mcad/mcs Today, Some Questions On That And The Cns

[Serbo]

Hi all,

So today, thanks to the knowledge of the amazing posters on this forum, I finally got a diagnosis of MCAD and MCS from the immunologist. From my 1st reaction to diagnosis has been about 6 weeks. I am so greatful for the help of everyone on here who helped me pursue a diagnosis.

So I have some questions for others in the same postion, sorry for the long post and ramble in advance!

- I have to now carry a medi/bracelet card with MCAD/EDS III, POTS and Diabetes insipidus on it. Any tips on how to present this? Aware most people have not heard of MCAD. I am going to put a card on my keys I think.

- Is there anyone else like me who has MCAD and drug sensitivity (i.e cant take antihistamines)? If so what drugs can you take?

- is there anyone one here who has normal POTS and MCAD, or just hyper POTS?

- Does anyone else have Diabetes Insipidus and MCAD? My Immunologist said that low unrine osmoality can skew the methyl histamine result, becuase of something to do with the creatine. i dont understand exactly what he means but it seems that low urine osmoality can increase the unrine methyl histamine result. My immunologist is contacting an MCAD expert from Spain to confirm my diagnosis because of this.

I am being admitted to hospital to try Sodium Cromoglycate next week in case i react to it. i am nervous about this becuase i read on here that someone has had drop attacks from it. I have had this before from zyrtek, and if i cant take Sodium Cromoglycate or anti histamines i'll have to be living in a bubble! They will also be testing adrenaline, hydrocortisone and fludrocortisone. I couldnt tolerate fludro previously.

I have a theory that my CNS is super sensitive or theres something wrong with it. I have central diabetes insipidus with no pituatry inflamation etc, extreme reactions to drugs such as the drop attacks and heart rythym disruption from some anti histamines. My head MRI was normal.

I also spoke to the Immunologist about the role of stress/stimulation in MCAD/MCS. I can eat some foods fine one day, and then the next day react. The same applies to some chemical smells. He think stress plays a big part of it, as yet they are not sure how, but stress can certainly degranulate mast cells and cuase flushing/urticaria. i wonder if an MCAD patient could induce anaphlaxys throguh a panic attack or extreme stress!

One final thing. i had been experiencing what i can only describe as sudden jolts to the head out of no where for a while. Immunologsit thinks they are interestingly associated with sudden MAST cell degranulation. This makes sense to me, recently had them when i smealt a spilled bottle of mouthwash, and was in a room full of chinese food.

Sorry for the ramble!

Aaron

[issie]

I can sometimes take antihistamines, but other times not. I figured out that they were dehydrating me even more - and their not supposed to. I've started really taking allot of Vit C and that seems to be helping as much as the antihistamines did - when I was using them daily. I've also read that Quercetin is very good for that. I also use Grape Seed Extract which helps with anti-oxidant factors and vein function. I'm being able to use these and not have to take the anti-histamines all the time - just when I have a bad reaction. I'm like you and never know when that will happen and what to. One day, one food will be fine, the next day I'll react. It's really unpredictable. Glad you're getting answers.

By the way I also have EDS III and HyperPOTS.

Issie

[Serbo]

Thanks for the reply Issie. How many Mg of vitamin C do you take? slow release I imagine? I had heard that blueberries are a natural antihistamine, perhaps because of the vit c.

I had some other lab tests done, and the Dr asked if i took vit D supps becuase the result was high. i do not, so i must be doing something right in that respect!

[issie]

The slow release would probably be better, but just using a cheapie by Nature Made 1,000 a.m. and p.m. The Grape Seed Complex has Green Tea, bioflavonoids and Bilberry (Thus your finding on blueberries - similiar) is by Spring Valley - another cheapie. These seem to be working well for me.

Issie

[POTSMama]

So glad to hear your doctors have diagnosed you.... not a good diagnosis, of course, but at least you know what you are dealing with and now can start the road to getting it to a manageable level hopefully. That's where I am too, trying to manage my symptoms. I have hyperadrenegic pots and am now quite sure I have MCAD, but I'm still going through the tests to rule out other stuff and get a more firm diagnosis. Can you tell me what tests they did to come up with the MCAD/S diagnosis?

I am struggling with finding the right meds too. Unfortunately, I couldn't tolerate doxepin at all, but doing OK with hydroxyzine (Atarax) and Allegra and Benadryl - - I do get super dry so drink lots of water and electrolyte replenish. The first few days of the Allegra I thought i was getting quite a bit better, but today I took it and had a bad reaction day anyway so was quite unhappy about that, and not sure what I reacted to (like you've both mentioned, I feel like my allergy foods vary from day to day, or maybe it's my stress that does). On the Allegra, some really weird facial and body numbness seems to have largely resolved though. Tonight I have to try Singulair again - - told my doc I'd do it, but am nervous because I did have what seemed like a reaction the first two times I tried it a few weeks ago. I'm so medicine paranoid that I'll probably split it in 4ths and just take 1/4 for a couple days before going up (barring a bad reaction to the first 4th) That way, it's out of my system faster if I do react, but if I'm going to react, I do it to even the smallest quantity. My GP is going to call my allergist/immunologist to see if she is OK with me trying oral cromolyn, as right now I only use the Nasalcrom which doesn't do much I'm convinced. I am jealous that they are checking you into the hospital to try meds! That's a great idea and hopefully they will find the right combo for you. I suggested that to my doctor and she wouldn't go for it - - so I'm at home trying them myself nervously and with Epi-pen near by in case.

What foods are your staples that you can tolerate well? I was doing chicken, rice, cauliflower, broccoli and carrots, and rice cakes/rice cereal. Boring but it was working until a couple days ago and now I think I'm reacting to rice and broccoli and carrots. Tried oats and one time has a whopper of a reaction but on second try didn't. My GP says I should quit worrying about gluten and just try some mild wheat food, but I had gone gluten-free several weeks before my first anaphylaxis a couple months ago, and I'm leery of trying it. But I have to eat something. It's so hard to know what to eat - - I've reacted to squash, apple, banana, green beans. My GP is concerned because I've gone from 159 lbs to 139 lbs in 2 months. Although 139 is actually my ideal weight, and I'm enjoying looking slim in my clothes again,, ha, I'm worried that at this rate I'll lose too much more over the next two months.

[anaphylaxing]

Glad to hear of the progress Serbo. I am also SO impressed that they are admitting you to try new meds as a precaution. WOW. You have a great doctor.

I have regular POTS, MCAD, JHS/EDS III

Stress can definitely aggravate mast cells which is really a strange thing to get used to. . .

Keep us posted on your progress I hope you find a medication combo that works for you!

[anaphylaxing]

Oh oops forgot to mention the mastocytosis society recommends putting "systemic mast cell disorder" on your bracelet instead of MCAS because it's better understood

Also I often get high volume urine output when I flare but haven't been checked for DI just kept slamming back the fluids

[Maiysa]

Glad you got some answers Serbo. Wow, you sound like you have awesome doctors. Good for you. I don't know if I have MCAS, but today I ate some fish and I got flushed and have been very ill with a fever of 100 and am now hacking up terrible stuff from my gland in my throat. I hope it goes away because I can't take any medication....at all. Not even pepto bismol, it sent me to the ER once. So I'm afraid I will be in the same boat as you if this is my issue. I will curious to hear how you are doing. I hope you can feel better soon. Will be thinking of you next week. Glad they are putting you in the hospital to try some meds. That's really good to hear.

[MightyMouse]

Aaron, how fortunate that you got your diagnosis so quickly. That doesn't happen often, as many of our members can attest. As to stress/ panic, it will definitely cause problems because it involves huge release of catecholamines, which speeds up all your body systems.

[hilbiligrl]

Hi Aaron,

I too have MCAD..... and chronic autonomic dysfunction (dysautonomia)...... i haven't been diagnosed with hyper pots, but i'm pretty sure I have it.

I am one of the few that is super sensitive to antihistamines like benadryl, vistaril, etc....... i cannot take that stuff for some reason... it litterally has me climbing out of my skin....

I have not been diagnosed, but the diabetes insipidous..... id say i def have it. I use to urinate up to 40 some times a day, for years...... until i started my MCAD meds...... after being on mcad meds for a few months, i no longer have this prob, except for a few flares here and there. Also, im not sure if you have had any breathing issues.... i did for many years, until i started on the mcad meds......

Yes, my cns is way overstimulated...... i feel like i am forever stuck in the flight or fight mode and my integrative doc and i are working at balancing it out without conventional meds......

yes, i get these jolts inside my head that literally, feel like someone just hammered an icepick from the base of my skull threw to the top of my brain.... i have had these 'jolts' since a child and they hurt like nothing i could describe but only last a couple of mins..... i always thought that was normal but finding that it actually is not suppose to be normal. I have no idea what causes this, but seriously, that jolt of pain/electricity or whatever it is, like i said, feels like someone thrust an icepick up into my brain and it usually starts at the base of the back of my neck and shoots upward through my brain..... ugh.... would love to know what that is.

Also, i read an article where gluten can cause mast flares..... im going to share the article this week, cuz it also talks about how cannibas affects the mast cells.... interesting stuff...... so, you may be intolerant to gluten, especially at high intakes.... i know i am and have just recently made that connection, so my doc ordered me on a gluten free diet.

Im no expert by any means, but i've pieced together so much stuff on here over the past year and half and what my doc and I have found to work for me, i have found on here and taken to my doc and he is great about trying new stuff and has an open mind. We still struggle to get me functional again. I went about 8 years left untreated...... have only known about what i've got, just in the last year..... but i've made some progress here and there, but have also progressed a tad worse at the same time.... i know, contradicting... but these diseases are so very wild indeed.

good luck.... these folks on here are wonderful..... you can read my med regimen at the bottom..... if someone has same symptoms as me, i always check out their med regimen and what they have been diagnosed with..... those key things on here have made things easier for me to put things together and gave me ideas on how to treat me.......

best wishes!

tennille

[Serbo]

So glad to hear your doctors have diagnosed you.... not a good diagnosis, of course, but at least you know what you are dealing with and now can start the road to getting it to a manageable level hopefully. That's where I am too, trying to manage my symptoms. I have hyperadrenegic pots and am now quite sure I have MCAD, but I'm still going through the tests to rule out other stuff and get a more firm diagnosis. Can you tell me what tests they did to come up with the MCAD/S diagnosis?

I am struggling with finding the right meds too. Unfortunately, I couldn't tolerate doxepin at all, but doing OK with hydroxyzine (Atarax) and Allegra and Benadryl - - I do get super dry so drink lots of water and electrolyte replenish. The first few days of the Allegra I thought i was getting quite a bit better, but today I took it and had a bad reaction day anyway so was quite unhappy about that, and not sure what I reacted to (like you've both mentioned, I feel like my allergy foods vary from day to day, or maybe it's my stress that does). On the Allegra, some really weird facial and body numbness seems to have largely resolved though. Tonight I have to try Singulair again - - told my doc I'd do it, but am nervous because I did have what seemed like a reaction the first two times I tried it a few weeks ago. I'm so medicine paranoid that I'll probably split it in 4ths and just take 1/4 for a couple days before going up (barring a bad reaction to the first 4th) That way, it's out of my system faster if I do react, but if I'm going to react, I do it to even the smallest quantity. My GP is going to call my allergist/immunologist to see if she is OK with me trying oral cromolyn, as right now I only use the Nasalcrom which doesn't do much I'm convinced. I am jealous that they are checking you into the hospital to try meds! That's a great idea and hopefully they will find the right combo for you. I suggested that to my doctor and she wouldn't go for it - - so I'm at home trying them myself nervously and with Epi-pen near by in case.

What foods are your staples that you can tolerate well? I was doing chicken, rice, cauliflower, broccoli and carrots, and rice cakes/rice cereal. Boring but it was working until a couple days ago and now I think I'm reacting to rice and broccoli and carrots. Tried oats and one time has a whopper of a reaction but on second try didn't. My GP says I should quit worrying about gluten and just try some mild wheat food, but I had gone gluten-free several weeks before my first anaphylaxis a couple months ago, and I'm leery of trying it. But I have to eat something. It's so hard to know what to eat - - I've reacted to squash, apple, banana, green beans. My GP is concerned because I've gone from 159 lbs to 139 lbs in 2 months. Although 139 is actually my ideal weight, and I'm enjoying looking slim in my clothes again,, ha, I'm worried that at this rate I'll lose too much more over the next two months.

Thanks for your reply Carol. Sorry to hear that likewise you are still going through it all.

The tests they did were urine methylhistamine and serum tryptase. Here in the UK they dont do a 24 hour urine collection like they do in the US. I just had 3 random urine samples about 2 weeks apart. 2 were high 1 was normal, and the 3 blood draws (serum tryptase were normal) which is sugestive of MCAD.

They also blood test to check other pathways, 1 look to look for a histmaine sensitivy problem, and 1 to look for a histmaine release problem (seperate to MCAD). Thats how i had it explained to me.

They also do diamine oxidase blood test, and would have liked to do a progesterone d blood test but it's only available in the US at the moment. Maybe thats the one to push for? I understand it's very useful in diagnosis of MCAD.

They need to rule out Pheo and Carcinoid but from your previous posts i think you mentioned that they are on it.

The doc said MCAD patients can flush/induce urticaria thorugh stress/nerves alone, something we need to be concious of when taking new meds. I could induce what looks like an allergic reaction before even taking the meds! Your med plan sounds good. You are further down the line than me in trying the meds.

Staple foods..........

Some of these induce itchyness/numb/bp drop etc face but i just eat them anyway:

chicken (not packaged)

salmon (not smoked)

steak

eggs

some white fish

seed and nut bars

honey

gluten free seeded bread (but not brown for some reason)

low fat mayo

sweet potatoes

potatoes

cajun spice

pepper

olive oil

lettuce

brocolli

green beans

carrot

sweede

cauliflower

bannana

apricot

blueberries

strawberries

apples

cherries

rasberrys

organic dates

I have been generally paleo/gluten free for about 6 months now, but tried some oats about a month ago and it gave me the worst food reaction i've had, put me in ER. So i'm staying paleo for now, grains dont seem to be good for me.

Couple of things the Immunogist said to me which might be of interest -

There is no uniform MCAD patient, as it stands it's recognised with MCAD patients that we take many forms. E.g - Some just have mcad, some have MCAD and MCS, some flush after exercise, some dont. Probably why we can tolerate different foods.

Once the mast cells are stirred up in a MAST cell patient you may react to things previously not reacted to. I think this is well illustrated by food in the sense that some foods are good one day and bad another.

Like you I have also lost a lot of weight, but quite enjoying it! Got a bit worried for a while though and managed to put on a half stone. i just allowed myself an extra dinner each day and increased the seeds/nut bars as they are high calorie and that helped.

Good luck with the oral cromolyn, let me know how it goes. I said to my doc that even in hosp i would only try like a quater pill 1st go and he said you can get it in syrup form where the dose can be reduced right down accruately. Might be an idea if you can get it.

All i know is that I cant do any grain based food right now, very boring eating potaotes for breakfast but if you could hack it might be an idea to try no grains for a day or so to see if it helps.

Aaron

[Serbo]

Oh oops forgot to mention the mastocytosis society recommends putting "systemic mast cell disorder" on your bracelet instead of MCAS because it's better understood

Also I often get high volume urine output when I flare but haven't been checked for DI just kept slamming back the fluids

Thank you! Nice to know you have regular POTS like me. i feel less like an anomoly now!

I will be medical bracelet/card shopping tomorrow. Do you take fludro or anything for your BP by the way? Desperate to get the mast cells stable so i can try midro/fludro again and get bp high enough to do normal stuff.

I check your blog some times by the way, please keep it up!

[Serbo]

Glad you got some answers Serbo. Wow, you sound like you have awesome doctors. Good for you. I don't know if I have MCAS, but today I ate some fish and I got flushed and have been very ill with a fever of 100 and am now hacking up terrible stuff from my gland in my throat. I hope it goes away because I can't take any medication....at all. Not even pepto bismol, it sent me to the ER once. So I'm afraid I will be in the same boat as you if this is my issue. I will curious to hear how you are doing. I hope you can feel better soon. Will be thinking of you next week. Glad they are putting you in the hospital to try some meds. That's really good to hear.

Thanks Maiysa, sorry to hear about reaction! I hope its passed by now, i feel your pain in not being able to take any meds for it.

The worst reaction I had my tempearture was very low rather than high and i was sweating quite a lot. I guess we are all different!

[Serbo]

Aaron, how fortunate that you got your diagnosis so quickly. That doesn't happen often, as many of our members can attest. As to stress/ panic, it will definitely cause problems because it involves huge release of catecholamines, which speeds up all your body systems.

Thank you. You are so right, unrequired stress/panic must be the enemy of a POTS patients' ANS!

[Serbo]

Hi Tennille,

Glad to hear the MCAD meds are helping some what. Not really had breathing issues, but when i react to dust/perfume/chemical's whatever I cough tons and often see some blood in the saliva. Gross! Getting this checked out by an ENT soon. I think EDS in all formats can cause tissue fragility.

Likewise i'd like to get an MRI or scan done at the time of jolt to see whats going on. Possibly its the bodies reaction to a huge sudden release of mast cells, or a sudden change in BP, who knows!

completely agree with you about gluten. I get no nausea now at all. I've read that the problem with wheat now is that it's been genetically modified to be longer to produce a higher yield, and this modification might be whats causing the problem. The body just isnt used to it in this format. Good luck with the gluten free diet, a paleo based diet doesn't seem all to bad based on some of the the recipes i have seen.

Thanks for the tip about reading other peoples meds, i think i might try some of the supps you list. Glad to hear that you have been diagnosed and know what your dealing with!

Aaron

Edited January 19, 2012 by thankful
removed quote

[targs66]

hi Aaron,

First of all, congrats on your speedy diagnosis - hopefully it will help you find what you need for a cure.

If you don't mind my asking, who is your doc? I'm from the States but live in Northwest England right now. (If you prefer, send me a private message.) I have gotten NOWHERE with my GP - I'm told I have ME and there's nothing to be done for it.

Many thanks. Keep us posted on your progress.

-Shelly

[Serbo]

Hi shelly, will PM you

[anaphylaxing]

Aaron,

I tried fludro and had a bad reaction to it,; had to be admitted to hospital

So I'm trying the MCAS meds and lots of water

Thanks for checking out my silly blog.

Hopefully together, we can fight our way back to some normalcy!!!

[POTSMama]

Thanks for checking out my silly blog.

Hopefully together, we can fight our way back to some normalcy!!!

Ana, your blog is not silly at all - - it's wonderful. Yes, I love the thought that one of these days we'll be posting to each other that things are more or less back to normal, or at least the new normal! But it's only uphill from here, right? My days are so variable - - yesterday was awful/symptomatic/stayed home/felt a mess/wondered if I'd ever feel "normal" again...... Then today I got up feeling good and went to the lab for the last of my blood draws/went to work at my office for 3 hours/picked up the girls from school/went shopping. Tonight I'm quite exhausted but feeling very self-satisfied that I had a functional day and felt more or less normal. My goal is to have more days like today. I still can't eat enough (thanks for the ideas, Aaron, and the info), but my scent sensitivity is WAY better now that I'm on Allegra, or at least I think that's what helped based on the timing.

[anaphylaxing]

Carol---Way to go on your day!!! That is AMAZING! I am so happy for you and it is great motivation for all of us! You've been battling this thing head on!

Good to know about Allegra---this scent sensitivity is driving me mad! though some would argue it' driving me more mad

[juliegee]

Aaron,

forgive me for commenting so late- I somehow missed your post. I am over the moon about your DX. Yay!!! PLEASE share the name of your marvelous doctor who was open to all of these connections.I know that s/he can be such a help to other members here. I am thrilled that you received your DX in such record time. Helping other sufferers is ultimately the reason that so many of us post; so it's very encouraging to see the progress that you have made. Your self advocacy, research, persistence, and determination are a model to us all.

I am guessing by your questions, regarding meds, that your doc is not one of the top mast cell researchers. S/he may have to work with either Dr. Marianna Castells in Boston or Dr. Lawrence Afrin in Charleston to help you find an effective regimen. Dr. Castells also does phone consults OR you may be best served by a visit to either of them.

Please keep us posted on your progress. I am delighted that you have a DX firmed up, and have my fingers and toes crossed that an effective treatment plan will follow.

Julie

[targs66]

Hi shelly, will PM you

Thanks very much.

[doggus]

Aaraon - PLEASE could you pm me too? I am in the UK. I actually posted here a few months back asking if anyone in the UK had managed to get a MCAS diagnosis as I am struggling to get one. I have POTS and EDS. Your immunologist sounds clued up - and congrats (though sorry) on getting a quick diagnosis. I have had terrible experiences here with top allergists claiming I just have anxiety before finally getting a POTS diagnosis but I would love to nail down a MCAS diagnosis too. If you know what i mean!Thank you.

[Serbo]

Aaron,

forgive me for commenting so late- I somehow missed your post. I am over the moon about your DX. Yay!!! PLEASE share the name of your marvelous doctor who was open to all of these connections.I know that s/he can be such a help to other members here. I am thrilled that you received your DX in such record time. Helping other sufferers is ultimately the reason that so many of us post; so it's very encouraging to see the progress that you have made. Your self advocacy, research, persistence, and determination are a model to us all.

I am guessing by your questions, regarding meds, that your doc is not one of the top mast cell researchers. S/he may have to work with either Dr. Marianna Castells in Boston or Dr. Lawrence Afrin in Charleston to help you find an effective regimen. Dr. Castells also does phone consults OR you may be best served by a visit to either of them.

Please keep us posted on your progress. I am delighted that you have a DX firmed up, and have my fingers and toes crossed that an effective treatment plan will follow.

Julie

Julie - I missed your post somehow, thank you for your kind words and advice as always! Things are looking up i think. I hope you are faring well also.

I had my sodium cromoglicate challenge today. I don't want to give to much away about the format of the challenge in case anyone else with drug sensitivities undergoes a similar test. I will say though that placebo is a powerful thing.