Hello all,
My name is Barbara. In the past 4 months I have had 3 tryptase tests done and the results were slightly elevated. The results were 14.6, 15.8 and 15. I also had extensive allergy tests which were all negative. My allergist is not sure what to make of it and suggested I go to a mast cell research center. I contacted Brigham and Women's Hospital and they told me they wouldn't see me without a diagnosis. I am not sure what to do next. My doctor is very open minded and would probably do whatever test I request, but I am not sure what to ask for at this point or if I even have a mast cell problem. I was hoping to get some suggestions from you all. I live in northern New Jersey, not far from New York City. I see that someone recommended Dr. Anne Maitland in NY, any updates on her?
My symptoms include the following:

Adverse reactions to chemicals, perfumes, bee venom, opiates, sedatives, muscle relaxers, medications, estrogen, molds, cats, dust, foods.

Sudden appearance of red very itchy areas on my hands, fingers wrists, feet ankles, toes.

Itchy, painful sores on my back. And general itchiness all over.

Migraine Headaches

Fatigue

Cognitive difficulties, memory problems, anxiety, irritability

Rhinitis

Asthma

Stomach and Intestinal pain/bloating

Muscle pain

Tinnitus

Cornea disease (two cornea transplants)

Thanks!

The alternative you might think about for diagnosis, since you have a specialist who appears  open minded, is to contact Dr Afrin (you should be able to find his contact details in the doctor thread). I do not live in the States but I contacted him by email and he offered to provide  my doctor with a packet of information to allow him to work through the diagnostic process.  

Ruth

Spartako wrote on 04/20/13 at 17:45:26:




Hi Spartako, a welcome to the forum to you too!!!  I'm so glad you got your diagnosis!  That's the hardest part of the entire journey, trying to pin it all down!!!   Not an easy task, huh?!


You are right, there is a difference between taking a baseline measurement of tryptase and that of an acute measurement and that goes with histamines and prostaglandin D2 as well.   If you have any one of these taken during an event then another few must be taken at baseline in order to know whether you are going through just a mere anaphylactic attack or you are chronically releasing MC mediators.   It's the chronic/baseline measurement which indicates masto.


A comment:  as to Dr. Valent and his paper here:  There are two distinct groups of researchers in MC disorder research: those of the proliferative camp and those of the MCAS camp.  For the past 20 years it has been the voice of the proliferative camp which have drowned out those of the MCAS camp.  They have insisted that no other form of masto exists exclusing every patient who did not show proof of the neoplastic aggregates.  They have built their names upon this and have ended up putting a great many of us through torture due to this stubborn stand upon this being the only true form of mastocytosis.  It has been the likes of Dr. Castells and those few doctors like Dr. Roberts, Oates, Schwartz, Escribano and Molderings which has forced the others to open their minds back up.  It was Dr. Roberts and Oates who declared back in the 1980s that these two forms existed - proliferative and activation.  However, since they could not "prove" the activation form, and still can not, the one group insisted that the activation form did not exist and stubbornly insisted that there was but only one form and one diagnosis for that form thus exluding a ton of patients from getting help and answers!!!   The recognition by Dr. Valent and his colleagues is a reluctant recognition since the wave is going in that direction.  Dr. Akins opened the door to showing that IA patients have the defect on their MCs and  Dr. Molderings and Dr. Escribano have opened up the doors to proving that there exists more than one genetic defect upon Kit and that this may explain a great many of the contradictions that they seem to see amongst us now.  Yet, unfortunately we have seen that Dr. Valent and Dr. Metcalfe and their colleagues still are reluctant to accept MCAS as a diagnosis in spite of the fact that they were both part of the WHO Consensus on MCAS in 2010.  

As to the paper itself, it's a very good paper and I was very pleased to see it published.  My hope is that the more these reports are published, the more we will find doctors who are willing to take our cases and care for them!!   Doctor education is the KEY to our finding help and treatment!!!!  

Thanks so much Spartako for posting this!!!   It's a good article!!!  


Hugs!


Lisa

Hi Barbara,

I am sorry you are going through this. I also have elevated tryptase levels (44, 29 and then 31). I am going to see Dr Castells tomorrow. I made the appointment over 2 months ago.

I can only tell you what my experience has been so far. The office staff is amazing!!! They answer all my questions and calm all my fears.

Getting an appointment was a long arduous task. I called and was told that I had to call another number to get a patient ID number (BWH medical record number), after I had this I could call back. So I did this and then was told that no appointments would be given until all the tests that they feel are important are completed. (I will list the ones they told me to have done below). For me, the only one I hadn't had done was the 24 hour urine tests.

Once the tests were done, I went to my allergist and she faxed over the paperwork AND a letter a referral (they are really strict about that having this). The day after they received my paperwork and the doctors reviewed it, I was called and given an appointment. The only other thing they asked of me was to send my bone marrow slides to their pathologist.

The letter I received from the office started by saying they would only accept patients with a confirmed or strongly suspected diagnosis of cutaneous or systemic mastocyctosis. When I asked about this the woman who answered said these are old letters that need to be updated, so don't worry about that..

There were 11 bullet points on this letter, the first saying that a written referral was to be sent.

the tests they said were needed are as follows:

recent office visit notes,
blood test results
hospital and ER visits
biopsy reports ( I also had skin biopsy's done)
serum tryptase level
a complete blood count w/differential
24 hour urine tests for: N-Methylhistamine  and
                                 11-betaprostaglandin F-2 (this was elevated for me, it was 1318, anything under 100 is normal. I guess my body thinks normal is over rated).


I hope this helps even a little bit. I know how hard this journey is, especially when friends and family think it is nothing and tell you it's just stress and I should "calm down".  YES, that is my life  lol.

Good luck and I will let you know what Dr Castells says.

Maureen