2 Regional Docs Agree I Have Mcas

[DoozlyGirl]

Hi everyone,

Wanted to share that with the help of my cyber friends on DINET and the Mast Cell Disorders, I have just been diagnosed with MCAS as the trigger of my sympathetic overdrive, orthostatic issues and autonomic neuropathy. When I first read about MCAD on here, I didn't think it applied to me, even though several of you sent me messages or posted that I should really look into mast cell disorders. I already had dealth with multiple chemical sensitivity, multiple food and drug allergies, and anaphylaxis, but those symptoms seemed to have been settled with my previous treatments (which interestingly involved several drugs used for a typical MCAS regimen). I have learned a few things that may help you sort out the mast cell information out there.

I did not know that the clinical diagnosis of anaphylaxis doesn't have to involve tongue swelling or breathing issues!! For example, there are 4 levels of anaphylaxis and my episodes involving:

• skin (such as flushing, hives, or rash that comes and goes)
  
• GI - evacuative, sudden "D" and vomiting
  
• Cardiac - orthostatic or low BP
  

meets that diagnosis. Well this just opened up my word!! I have now been able to find a bunch of new triggers and explain that most of the meds I can't tolerate are mast cell degranulators! This means I have been poisoning myself for years. If you have trouble with

• antibiotics (especially penicilin, sulfa, levaquin, cipro,, vancomycin, etc),
  
• codeine, opioids (morphine, hydrocodone, etc),
  
• NSAIDS (ibuprofen, Aleve),
  
• skin anesthetics (lidocaine, marcaine, etc),
  
• other sulfa meds, like migriaine triptans, topamax, diuretics (lasix, hydrochorothizide),
  
• muscle relaxers
  
• contrast medium (x ray dye)
  
• adenosine
  

then you may want to look into mast cell disorders as a potential cause of your POTS or other autonomic dysfunction.

I urge anyone with unexplained reactions to anything from fricture, pressure, heat, cold, water, foods, meds, perfumes, hormones, and changes in barometric pressure to consider misbehavin' mast cells as the cuplrit. Check out the many great discusisons on here to learn more.

Best Wishes and thanks for sharing your stories.

Lyn

[corina]

Thanks for sharing Lyn and happy that you have found an answer to your problems!

[DoozlyGirl]

I can't believe I missed a very important drug class. Betablockers are also mast cell degranulators and can cause havoc for those with misbehavin' mast cells.

[Maiysa]

That is great to hear you got diagnosed. Yay Lynn!! But not "Yay" that you have another disorder. Sorry about that. But isn't it nice to have a missing piece of the puzzle. I went through the same thing, where I thought MC didn't apply, so I honestly put it on the back burner for years as another girl told me the same thing on Medscape blog years ago. But then everyone kept encouraging me to get tested....so glad they did. May I ask how you were diagnosed? Do you have to get a bone marrow biopsy? My tryptase was elevated past the normal and then symptoms is how I was diagnosed thus far. But the doc took 11 vials of blood and I still don't feel well yet after that. So we have more tests to take. Also, what is your next plan of action? Sorry so many question.

[Katybug]

Lyn,

So glad you got a dx! Hope you find the right treatment plan to get you feeling really well!

Katie

[DoozlyGirl]

Thanks Corina, Maiysa, amd Katie! A whole new world to master.

Maisya, No worries, I don't see it as a new disorder, I truly feel this is the right disorder! I can't wait so see how many of my existing disorders (central sleep apnea, syncope, orthostatic hypotension, chronic hives, anutonomic neuropathy, delayed sleep phase syndrome, chronic fatigue syndrome, multiple chemical sensitivity, fibromyalgia, migrainers, IBS, GERD, Hyperinsulinemia, insulin resistence, reactive hypoglycemia, allergic rhinitis, Vitamin D deficiney, anemia, metamenorhhagia,and more ) may fall under this one diagnosis and go away with a proper MCAS regimen. Time wil tell! Congrats on your new diagnosis!

My autonomic neurologist sent me for a skin biopsy due to my weird looking hives, blotching and flushing. The biopsy, showed plasma cells, histiocytes and lymphocytes and demonstrated vascular flushing, meaning my blood cells leave the vasculature and escape to my tissues. This greatly impacts my orthostatic issues. I also have superficial blood vessels in the skin, which aren't suposed to be there. My tryptase was only 2.5, so ruled out systemic mastocytosis. All of this with my current and past symptoms in addition to the fact I have been treated in the past for MCS, allergies and anaphylaxis with the same meds used in a MCAS regimen and have gone into remission! I am now being referred to a mast cell expert for consultation and treatment plan.

How about you, what are your future plans? Please keep in touch so we may compare notes.

Thanks,

Lyn

[Maiysa]

Lyn, what crazy timing for us both to get diagnosed within the same week. Yay, answers! Good to hear you already had the skin biopsy. Do they think you might have the cutaneous type/ skin type? Also do they think your mast cells are leaking? I read something on this. But I'm sure like me they weren't able to tell you much yet. I was told I can't take the medications until they are done testing because it will affect the results. But I am not a fan of the bone marrow. I am praying that this is not the case. I had a spinal tap last year and I'm quite over these tests. ME IS A CHICKEN!! But I guess I will do what I have to do. We will see.

I have autonomic neuropathy, orthostatic intolerance, autonomic dysreflexia, thyroid disease (schmanser and toxic, possibly hashimotos, but they took out my thyroid) anemia, chronic valley fever, GERD, fibromyalgia, constant migraines, etc. and a lot of lil issues. We have many of the same symptoms. But I don't have the sleep apnea situation. Sorry you have to deal with that, (my husband has it.) My headaches are at an all time high. It's debilitating. But I'm hopeful that this is the cause and hopefully the medication will be the cure. But.... I'm sooooo confused with this diagnosis that they gave me. I didn't realize that mast cell had so many branches and that those branches have so many aspects. I was told I have mast cell activation but that it is possibly systemic. The girls on the MCAS site told me that it means it's possibly affecting other systems in my body. But I read that systemic is a tryptase higher than 20 and mine, by the grace of God is only 11. But thankfully they said no leukemia. So I am not understanding the systemic side. But I guess I will have to wait. I go back to the hematologist in two weeks and then to the Immunologist/Allergist in May. So it's a little bit of a wait for me. I hope you can get to the doctor sooner. And I hope one is close by for you. I got lucky that I have one in my area that deals with this.

The hematologist told me that he doesn't want too say too much too soon, but he said he is quite positive that this is the cause of the autonomic neuropathy, the valley fever and the thyroid disease. He said he can't fix those other diseases but thinks the medication can help to keep the MCAS at bay to help the other diseases from flaring up. He said, I don't want to sing my praises too soon, but I think the mast cell is the catalyst to everything you have going wrong in your system. Never thought this day would happen. That would be a miracle to have an answer and a ring leader of the crimes committed on my body!!! I pray that you too have answers soon and can get your life back.

Please keep me updated. Nice to have someone to understand. Thanks.

Maiysa

[DoozlyGirl]

Maiysa,

You are right, and I feel it is fitting we both simultaneously found MCAD to possibly account for our many similarities (autonomic neuropathy not POTS, OH, high BPs, "seizures", GERD, fibro, syncope).

Skin biopsy was of my chest due to crazy flushing/blotching/hives, but I also have other skin related rashes. I likely won't need a BMB since my tryptase is only 2.5 and there is little probability of systemic mastocytosis in my case. My symptoms indicate more is involved than just my skin, and my biopsy didn't show lots of mast cells, ruling out cutaneous mastocytosis. I do have skin involvement, but my diagnosis is mast cell activation syndrome. I've figured out I'm a leaker and have chronic low grade anaphylaxis on a regular basis, but have also shocked. I've requred Epi multiple times, but never had to self administer.

I can tell by your posts in the past few days you are a bit confused. Let's see if this helps. Mast cell are located in nearly every organ, so when they say systemic, that's all it means - it is in more than one organ, which is generically called systemic. You already got you MCAS diagnosis, so I don't think you have to worry about the other things, like cancer. You are likely confused by the term Systemic Mastocytosis, which is a name of the other end of the spectrum. Systemic Mastocytosis is known as a proliferative disorder, meaning there are too many mast cells. In SM, there is also mast cell activation, which blends in with what we've been diagnosed with - MCAS, but we don't have too many mast cells, as estimated by the tryptase level below 20. WHO defines SM as having a tryptase of 20 and mast cell aggregates of a certain size to meet that criteria. Your doc may want a BMB to look for those aggregates of clustered mast cells in the bone marrow, since your tryptase is higher than mine.

Do you know what kind of testing is planned for you? Allergy testing? Metabolite testing looking for PGD2, N Methylhistamine, or heparin? My dermatolgist already put me on H1, and I resumed a H2 for GERD. I am now working on identifying my triggers and working on cleaning up my diet. I react pretty consistently to tartrazine/yellow food dye also found in meds. I am now looking into red food and med dyes as a likely trigger for me. Which will make things tough since zantac and generics that I have found all have red dye in them. I've read that Dr Castells will NOT take anyone off meds to test, even some allergy testing. Hopefully you can go on meds right after your next appointment. I noticed an immediate improvement in some things within the first week of a H1 and even more changes with the H2. Looking forward to adding other meds to stabilize me. Maybe you can go on H1 and H2 then stop for a few days before your May allergy appointment. You may want to find out if the allergist is going to test on your first appointment or if you have to go back at a later date for allergy testing. This may help stablize you in the meantime.

I pray we both get our lives back. Keep in touch and let me know how your next Hematology appointment goes.

((Hugs))

Lyn

[Maiysa]

Lyn,

Thank you so much for explaining this to me. I was getting the SM mixed up with the MCAD. Okay, that makes sense. Thank you so much for sorting that out for me. You are so good.

I sent you a PM, so I don't have to hog the blog.