What'S All This Talk About Mcad??

[Tia Koul]

Hi guys!

So, I recently got into this forum, and am reading your new info about mcad. I had never heard about this before. I looked at the link with the symptoms, and lo and behold I have them all. Which doesn't necessarily mean anything but it got me wondering.

I have hyperpots, small fiber neuro, sleep disorder, endometriosis, emphysema, and seizures. But the last 2 plus years my body has gone nuts. I have been having what seems like an inflammatory reaction to stress. My coagulation tests were coming back irregular, then normal, then irregular, then normal again. Inflammatory tests were coming up positive. Not RA/Autoimmine stuff, I saw a rude rheum who said no autoimmune issues.

I think the inflammation happening in my body caused the endometriosis to kick into high gear. A lot of lower abdominal pain post period (2 ER visits), nausea, vomiting, bloating, rashes on my right arm everyday (like hives), strange puffy spots on my calves, intolerance to alcohol, and more that I cant remember right now. So, the testing began... found a pre-cancerous tumor in my colon, and the emhysema, lesions in my liver. But these are not causing the symptoms. Oh also found endometrioma's in my ovaries, and I already have multiple cysts/adenoma's in my breasts. I also had 2 seziures last summer, but one was more 'stroke' like in my opinion and I was conscious. But the coag tests went back to normal at last check. But, the emphysema is caused by genetic deficiency and smoking, so that could affect coag test results I think.

Anyhow, seasonal allergies have gotten worse. I am allergic to my kitties. I sneeze a lot, get puffy eyes, etc. My nose always runs!

I have spinal,cervical stenosis, spasms, bulging discs, etc.

No anaphlaxis ever that I know of, and I think I would know No obvious allergy issues that I would have considered until reading about mcad, now I wonder if my mild allergies are related to another possible cause?

So many health issues overlapping makes it confusing and I am almost too tired to bother. But thought I would post real quick to see what you guys had to say. I am very very tired right now, and I may not be clear at all, but that's the rough idea!

Thanks a lot ))

Hope that wasn't too confusing!! thanks )

[juliegee]

Hi Tia-

I first learned about MCAD here at DINET. On the website, MCAD is listed as a possible cause of POTS. Like you, I went to The Mastocytosis Society website, learned more & became convinced that I had it as well as I also had many of the symptoms. I joined a forum and learned all I could about it from folks already DXed and those seeking a DX. Eventually I ended up seeing a mast cell doctor in Boston who confirmed my DX.

Here is a link to a relatively new and friendly Mast Celll Disorder forum:

http://mastcelldisorders.lefora.com/?utm_source=wknewsletter&utm_medium=wknews.address&utm_campaign=em&_mid=35-119705-a2f05166

Scout it out, join, and ask questions. You'll soon become an expert Once I began controlling my MCAD, my autonomic symptoms have gotten much better.

Take Care-

Julie

[Tia Koul]

Hi Julie! Thanks! I will check it out when I get back from the super market.. I may be asking more questions! So, you had to go to Boston? I am in NY but may have to move soon. I am almost glad to see there are new causes emerging. WOuld be nice to get to the bottom of this Thank you!

[Tia Koul]

Hi Julie, I checked real quick, and I think I saw another of your posts with that link. I had looked through it a few nights ago! Thanks!! lol. Do you think I fall into that category? Should I join the forum? Thanks

[Tia Koul]

Sorry, also remembered allergy to plastic/latex. Like grocery bags, rubber flip flops, electrode pads from cardiac monitors. Thanks!

[juliegee]

Hi Tia-

Hard to say....maybe post there and ask the members. I knew I had something going on when I would actually develop anaphylaxis if I didn't take my meds...and I'm allergic to NOTHING. Your symptoms are all over the place (I can relate ) & may have other causes. If you suspect this may be causing your POTS, by all means join & start asking questions.

I think I've only posted on that forum a few times last year, but you may have found me Best of luck untangling it all. Keep researching & asking questions.

Julie

[Tia Koul]

Hmmmm... ok, Julie, that's why I mentioned that I don't get anaphylaxis.. it seemed like a good cue. So, yes, we are all all over the place! lol. And maybe I don't fit in that category. Was just thinking about the allergies, hives, etc. But I will check out the forum further. And I saw your link to the forum here on dinet initially, atleast I think I did!! Thanks so much! Who really knows, I would just like a deifnitive cause to this lifelong mess. It's exhausting trying to figure it out!

[juliegee]

Tia-

It's really complicated. Some with mast cell disorders NEVER get anaphylaxis. Just because you don't...doesn't rule it out. Everyone seems to have a different presentation.

In mast cell activation disorder (MCAD), your mast cells are overly-reactive and you seem to have severe allergy symptoms (that can include anaphylaxis.) To further complicate things, some with MCAD also have traditional allergies, in which case, your IgE level could be high. In MCAD, IgE levels are typically low- that's part of what distinguishes it from regular allergies.

You're right, I have posted LOTS about MCAD here. It's been eye-opening for me to find out that this is behind my POTS symptoms

Best of luck untangling things. I really think that joining a forum & reading other's experiences and comparing them with your own will be invaluable.

Julie

[Tia Koul]

Tia-

It's really complicated. Some with mast cell disorders NEVER get anaphylaxis. Just because you don't...doesn't rule it out. Everyone seems to have a different presentation.

In mast cell activation disorder (MCAD), your mast cells are overly-reactive and you seem to have severe allergy symptoms (that can include anaphylaxis.) To further complicate things, some with MCAD also have traditional allergies, in which case, your IgE level could be high. In MCAD, IgE levels are typically low- that's part of what distinguishes it from regular allergies.

You're right, I have posted LOTS about MCAD here. It's been eye-opening for me to find out that this is behind my POTS symptoms

Best of luck untangling things. I really think that joining a forum & reading other's experiences and comparing them with your own will be invaluable.

Julie

Just curious Julie, what's an IgE? I have a ton of bloodwork that I can look through. Unfortunately none from the rheumatologist. I have to get those records. No rush! Sorry to ask so many questions!! Thanks

[juliegee]

Tia-

It's really complicated. Some with mast cell disorders NEVER get anaphylaxis. Just because you don't...doesn't rule it out. Everyone seems to have a different presentation.

In mast cell activation disorder (MCAD), your mast cells are overly-reactive and you seem to have severe allergy symptoms (that can include anaphylaxis.) To further complicate things, some with MCAD also have traditional allergies, in which case, your IgE level could be high. In MCAD, IgE levels are typically low- that's part of what distinguishes it from regular allergies.

You're right, I have posted LOTS about MCAD here. It's been eye-opening for me to find out that this is behind my POTS symptoms

Best of luck untangling things. I really think that joining a forum & reading other's experiences and comparing them with your own will be invaluable.

Julie

Just curious Julie, what's an IgE? I have a ton of bloodwork that I can look through. Unfortunately none from the rheumatologist. I have to get those records. No rush! Sorry to ask so many questions!! Thanks

IgE is an immunoglobulin that's high when allergies are triggered. An allergist would have been the one to order that test. When a patient has obvious allergy symptoms and low IgE, a mast cell disorder would be suspected. BUT (there's always a but ) if a patient with MCAD also has traditional allergies, the IgE could still be high.

If you suspect a mast cell disorder, your local allergist could run a blood test called a serum tryptase. In general, the only reason that would be elevated is if you have mastocytosis OR you've just experienced an episode of anaphylaxis. Serum tryptase is normal in most patients & doesn't rule out MCAD. Running a four hour urinary collection test test for methylhistamines after an epsiode (that might include flushing) is one way of confirming MCAD. To further complicate things, most allergists are not familiar with mast cell activation. The World Health Organization has just met in Vienna to hammer out uniform diagnostic criteria. Until that's compiled, released & dissemminated; many are forced to see mast cell specialists to get a DX. I had to travel to Boston (from GA) to see Dr. Marianna Castells at Brigham & Women's. That forum link that I gave you is an excellent resource to find a knowledgeable physician.

Keep asking questions. It's not straight forward and quite complicated

Julie

[Tia Koul]

Hi Julie,

I just wanted to say thanks for the info... I have not had the allergy teting done. Imay look into it! There are a few possible leads to follow that I would like to do before I leave the good ole US of A. I was thinking about trying some benadryl every night for a while to see what happens! lol. I can't say at this point that I truly suspect anything. there are so many possibilities, and I fall into each category. Hence the ongoing confusion. I just picked up a A1c glucose test (3 month overview) and I have no confused myself yet again! Too many tangents, and I am scrambling to get it figured out before I leave. Because once I leave, I can kiss my healthcare goodbye!!! That test showed prediabetes. So, yea, I'm confusing myself now! lol

Anyhow, just wanted to thank you for taking the time to assist! I am overwhelmed with life right now and not sure what to ask my doc about first. Plus, I am scared to leave and not have things worked out. Although I know that is a tall order....

Hope you are well.. and thanks so much ))

[juliegee]

Hi Julie,

I just wanted to say thanks for the info... I have not had the allergy teting done. Imay look into it! There are a few possible leads to follow that I would like to do before I leave the good ole US of A. I was thinking about trying some benadryl every night for a while to see what happens! lol. I can't say at this point that I truly suspect anything. there are so many possibilities, and I fall into each category. Hence the ongoing confusion. I just picked up a A1c glucose test (3 month overview) and I have no confused myself yet again! Too many tangents, and I am scrambling to get it figured out before I leave. Because once I leave, I can kiss my healthcare goodbye!!! That test showed prediabetes. So, yea, I'm confusing myself now! lol

Anyhow, just wanted to thank you for taking the time to assist! I am overwhelmed with life right now and not sure what to ask my doc about first. Plus, I am scared to leave and not have things worked out. Although I know that is a tall order....

Hope you are well.. and thanks so much ))

Tia-

I functioned fine for years with a ranitidine in the AM for severe GERD and a benadryl at night to help me sleep....little did I realize that the meds were probably stabilizing my mast cells. My MCAD didn't get really severe until my 40's- that's when many epsiodes forced me to figure it out.

I know what you mean by too many possible causes. Each of us is a puzzle and in many of our cases our autonomic dysfunctions have multiple etiologies.

Yikes, you're leaving the country??? Makes getting your health stabilized pretty important.

Good Luck-

Julie

[Tia Koul]

Yea, I am starting to panic. I am not ready, it's all happening very fast and at this point, and I have no choice. So, I am super stressed, tired, and thinking I have a month to get everything sorted. Including the move, pets, my health. I am not too happy. And you know what happens when stress sets in! I am almost incapacitated right now! But my mind is going a mile a minute. Of course, I am getting nothing done. Ugh. But we shall see. I'm going to get in to see my cardio who knows a lot about pots and see what he thinks about all this. Not sure I have time for an allergist. But he will have seen pretty much everything regarding pots related issues I think. I'm so tired though I may drop the ball big time. I'll see how it goes. All of a sudden, my house has to be packed by next week. I am sort of in meltdown mode at the moment! lol. Not sure what to do first. Plus, I went on a trial of neurontin last night, remembering how 10 yrs ago it seemed to balance me out. And I am still recovering from the one dose. bp crash, and headache since last night. Super bummed it didn't work But glad 2 coffee's got my bp back up. lol. Oh well. I think I will just go over all the concerns with the cardio and let him decide. But I have to try to get in next week. I'll let you know what happens! Thanks for your help and info! Sorry I am so scattered right now

[crowebirds]

Oh, Julie,

This is so much information to take in at once. I finally had the time to sit down and do the research, I even found the research that I was looking for on the WHO site as well as the American Heart Association and other credible research sites.

I sent off my daughter's records today to the new specialist only an hour away from us. There is a chance that she can be seen by him in November. I hope and pray that she will be seen. I can share this information with him and the Immunologist.

On the AHA website I found an article on "Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders". It seems so spot on for my daughter's health problems, and it ties both the urticaria and POTs together. It will be so nice some day when someone asks me what is wrong with my daughter, I can tell them. Instead of giving them a laundry list of diagnoses, my new answer will be short and to the point.

Blessings,

Robin