Just Diagnosed W Mcas- Thanks To Many Of You

[Kellysavedbygrace]

I first learned of Mast Cell Activation Syndrome (MCAS) on this site. Following a high NE level on upright tilt at Cleveland Clinic I started to take more interest in reading about this topic. Thank you to all of you who have posted about Mast Cell Activation. One member even PM'd me with the contact information and several references for Dr. Lawrence Afrin in Charleston, S.C. A huge blessing!

I took this info back to my primary doc and after a few more months with little progress in my condition we decided to go see Dr. Afrin. Two 8.5 hour road trips and 28 vials of blood later I finally have some insight as to the cause/mechanism of my Dysautonomia. I have had a little bit of improvement with double dose H1 blockers and quad dose H2 blockers. Some of the best relief I've had from brain fog and fatigue thus far. Now I begin a long term process of trial and error with various meds and a more scientific approach to identifying potential triggers.

As a side note:

Out of about 40 possible symptoms Dr. Afrin asked me about on the first visit I had problems w all but 2 (I have good nails and no sinus problems.). When the blood work came back I had elevated

Prostaglandins, Norepinepherine and Neuron Specific Enolase. These results along with reported improvement from the antihistamines confirmed the diagnosis.

If you have multiple issues with most of your organ systems you might consider getting tested for MCAS. Thanks again to all my friends here at DINET. What a blessing you are to me!

[ramakentesh]

There is some lack of agreement among practioners regarding this diagnosis. From what I understand Dr. Afrin is a proponent of MCAS/MCAD, Grubb/Vanderbilt are hesitant to accept it.

Edited November 20, 2012 by corina

[Dizzysillyak]

Congratulations. I'm working on this aspect too. I'm hoping my local dr can handle the testing but if not I'll try to see a specialist too.

Good luck finding meds or supplements that work for you. I still need to avoid my known trigger foods but I've been eating more of those since

finding meds that help.

If you're interested so far I'm responding to taking 25 - 30 mg Wal-zyr (Walgreens brand Zyrtec) + children's Benadryl + 90 mg Allegra with 90% - 100% improvement in swelling / angioedema. I didn't realize my pelvic and bladder pain were from angioedema caused by mast cells. It's wonderful not having pain all the time. : )

I had one negative diy pmttt (poor man's tilt table test) for oh and pots so far but I need to repeat this. It's my first negative test in 23 years tho. : ) .. I still need to work on staying upright longer tho.

Good luck .. D

[brethor9]

Rama; there has to be something to the MCAS theory as there are a lot of us who have finally seen improvement with symptoms that have been plaguing us for years. Personally, its answered a lot of issues I have had since childhood.....chronic urticaria, asthma, chronic sinusitis, severe gastro issues (including pathology that showed possible lymphoma but my specialist (who is NOT Dr Afrin and practices in Canada) says mast cells can mimic this. I have been struggling with this in some capacity my whole life and completely disabled for the last 2 years; I have tried every medication on the list for POTS and the only ones that have given an inkling of relief is the mast cell protocol. Maybe others don't test all of their patients for it because its not a real area of interest for them........and the testing is quite involved. As for Dr Afrin, of course he diagnoses a lot of patients...that is his specialty. I have been diagnosed by 2 different specialists here in Canada (one an oncologist)....they can't all be wrong

Bren

[futurehope]

Kellysavedbygrace,

I'm so happy for you. I, too, am a POTS patient diagnosed by Dr. Afrin this past year. It is truly a blessing to be able to tie all my infirmities together into something that makes sense. I am also in the experimental phase of trying medications. Continued good wishes to you.

[HopeSprings]

I have had a little bit of improvement with double dose H1 blockers and quad dose H2 blockers. Some of the best relief I've had from brain fog and fatigue thus far.

Good for you Kelly! Hope you find relief. Can you say what medications specifically you feel are helping with fatigue and brain fog?

[stv]

I first learned of Mast Cell Activation Syndrome (MCAS) on this site. Following a high NE level on upright tilt at Cleveland Clinic I started to take more interest in reading about this topic. Thank you to all of you who have posted about Mast Cell Activation. One member even PM'd me with the contact information and several references for Dr. Lawrence Afrin in Charleston, S.C. A huge blessing!

I took this info back to my primary doc and after a few more months with little progress in my condition we decided to go see Dr. Afrin. Two 8.5 hour road trips and 28 vials of blood later I finally have some insight as to the cause/mechanism of my Dysautonomia. I have had a little bit of improvement with double dose H1 blockers and quad dose H2 blockers. Some of the best relief I've had from brain fog and fatigue thus far. Now I begin a long term process of trial and error with various meds and a more scientific approach to identifying potential triggers.

As a side note:

Out of about 40 possible symptoms Dr. Afrin asked me about on the first visit I had problems w all but 2 (I have good nails and no sinus problems.). When the blood work came back I had elevated

Prostaglandins, Norepinepherine and Neuron Specific Enolase. These results along with reported improvement from the antihistamines confirmed the diagnosis.

If you have multiple issues with most of your organ systems you might consider getting tested for MCAS. Thanks again to all my friends here at DINET. What a blessing you are to me!

Kelly,

Could you please post here the list of tests that Dr.Afrin told you to do? I am very interested because I will tell my doctor to prescribe the same ones for me, the same ones that Dr.Afrin prescribed you I mean. I am in Europe and can't even think of meeting Dr.Afrin.

Is it a long list?

Any detail will be much apreciated. Thank you.

[DoozlyGirl]

Congratulations, Kelly!

I have also been diagnosed with Dr Afrin this year, after my autonomic neurologist witnessed one of my massive flushing episodes, immediately knew histamine was involved. By way, he was way up on mast cell activation.

I'm not sure what Rama is referring to, but I've read plenty about Dr Grubb believing there is a strong link between HPOTS and MCAS, from patients who have been diagnosed with both. And on the mast cell and EDS forums, there are several MCAS patients seeing docs at Vandy who have put all three of these disorders together. This point amuses me, because several endos had a hard time believing that autonomic neuropathy was a valid diagnosis in the beginning, until I educated them.

stv,

Maybe Dr Escribano in Spain or Dr Valent in Austria could help you, both are on the medical board for The Mastocytosis Society , along with Dr Afrin. http://www.tmsforacure.org/medical_board.php

Dr Castells and Dr Afrin are widely recommended by MCAS patients, but there are others in the world who are open and paying attention. Note that several docs on the list above focus their practice on systemic mastocytosis, a different varient from MCAS. NIH and Mayo Rochester fit that category, but patients have had great success with Mayo Scottsdale in connecting some dots.

Best wishes,

Lyn

[arizona girl]

Hey, Rama good to see you again. There is another aussie here named matt green, who pm'd me and had mentioned he'd like to know who your docs were there. Maybe pm him.

Actually, Grubb is looking at mcas as a cause and an interview with he and patient about it was recently posted here.

[kitt]

Congrats Kelly on getting this diagnosis nailed down

I guess many of us are in the process of doing so. Can you add the list of 40 symptoms that he asked you about?

It was me who posted the Grubb video talking with the young girl about hyperpots mca. I also added a link to a paper he wrote that has a list of symptoms for mca involvement with pots.

I took this list to my cardiologist, and he jumped on it. Flushing was listed as a symptom that is in 100% of patients with mca.

From memory I was surprised to read that only 38% of mca pots patients had high BP.

Dr. Grubb does understand mca with pots. I think the only obvious thing he differs on (from what I can read) is how prevalent it is. If you're looking for the video he did on hyperpots mca, it's on another thread, (think it's called Dr. Grubb and hyperpots mca) If you're looking for the list of symptoms he has written, (it's somewhat hidden in his article, as you have to double click on a box to see it), I can find the paper. But it too is on the same thread as the video.

Congrats again! Huge step forward in getting your treatment streamlined.

[futurehope]

I have had a little bit of improvement with double dose H1 blockers and quad dose H2 blockers.

Kelly, if you don't mind telling me, what H2 are you taking? How many milligrams in each dose? I was surprised that you could take them 4 times/day? TIA

[Kellysavedbygrace]

Here is a link to the paper Dr. Afrin recently published that is a guide for diagnostic workup. It includes a list of common symptoms, diagnosis criteria, and suggested initial treatments. The main point of the article is that anyone who has multiple symptoms in man or all organ systems should be worked up for MCAS.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/

What this article does not include are notes about proper handling of specimens which is often a problematic in gathering laboratory evidence of mast cell activation. For instance, of the 28 vials of blood drawn, all but a few had to be pre chilled vials and kept on ice until testing. The metabolites being measured are extremely heat liable and even a few moments at room temp can drop levels. Most of these tests should be performed immediately but unfortunately most of them must be sent out. Dr. Afrin's lab at MUSC is well trained on these protocols which for me made the difference in making the long journey. If you want a copy of his primer for physicians which details this just PM me and I will forward.

Rama, I value your input and PM'd you about this.

Bren, thanks for your insights and I am glad to not be alone on this journey.

FutureH, You have been a huge blessing to me with your wisdom. Sorry if I was unclear on antihistamines. I started with 10mg Claritin (Loratadine) 2x day and 20mg of Pepcid (Famotidine) 2x a day. Dr. Afrin wanted me to get up to 40 mg of Famotidine 2x a day. I am now titrated up to that level, have shifted to the generic versions from the pharmacy (to save money) and doing well when I'm not crashing. When I crash I add a dye free benedryl. Probably need to add more H1 and H2 as well but haven't figured that out yet.

As a side note- Monday I started on the aspirin therapy protocol. 1 baby aspirin put me in bed crashing for the last 2 days. As you probably know aspirin can trigger Mast Cell degranulation but aspirin also blocks prostaglandins, so for me, I plan on trying aspirin again at a lower dose in a few weeks with the aim of cautiously and gradually building up resistance to the

degranulation. This approach has been helpful for some. Will keep you posted but would love any insight you have to using aspirin.

Naomi. Thanks for your kind words. It is the Loratidine and Famotidine that have specifically improved my brain fog and fatigue, but again, only when I'm not crashing- which unfortunately is still a common occurrence.

Stv- the article mentioned above has most of the first line lab tests included and might be helpful to take to your doc since it is a published work. He also did some second line testing for additional mast cell mediators that are less specific (meaning they can be elevated by mast cell degranulation or other conditions). Some he did on me were the Fractioned Catecholamines, Tumor Necosis Factor alpha, Neuron Specific Enolase.

Doozy,

Thanks for all you have shared with me. I didn't realize Afrin was on the national board. Cool.

Kitt,

I'm so glad you posted that Grubb video. Thx. I wish I had a written list of the other items. I'm not sure it was exactly 40 but it was somewhere in that neighborhood. A good starting point would be the list of common symptoms from the article above.

From his progress notes I'm going to list the ones he noted in response to his list questions. If I recall he would ask something like, "Do you have any issues with your skin?". And then I would tell him about my severe itching and rash on my left hand. Here's the list of his notes.

----- chills, cold extremities, soaking sweats, headaches, migratory pruritus, chronic fatigue, migratory body aches, irritation of eyes, difficulty focusing vision, severe bilateral tinnitus, ear drum spasms/ pain, easy bruising, lip sores, ache/tingling/ numbness at the old root canal site, dyspnea, proximal dysphagia, GERD, nausea, diarrhea alternating w constipation, periodic inability to hold urine, left

hand rash, dependent edema in legs, lymph node tenderness and soreness, scattered subcutaneous modularity throughout extremities, sleeping difficulties, sleep apnea, episodic cognitive dysfunction, frequent pre syncope, rare syncope, alopecia, multiple dental issues, fluctuating appetite and weight.-----

OK that's probably more than you wanted to know.

[Lethargic Smiles]

I just thought I'd share Dr. Afrin no longer e-mails out the primer. I sent him an e-mail asking for a copy and he promptly responded:

Although I previously had been distributing a very informally written "MCAS primer" (for lack of any other published written guidance regarding the diagnostic approach to mast cell activation syndrome), my primer has now been supplanted by a comprehensive review chapter on MCAS I published in May in a new book on certain aspects of mast cell biology and disease. The primer is freely available to the public at the publisher's website at https://www.novapublishers.com/catalog/product_info.php?products_id=42603.

Best of luck