(Archived message from lisathuler - original forum)
Hi Pdl, I have to REALLY back Heather in this one cause she's right on the nose about what your doctor is saying!   You can look in ANY of the literature for diagnosing mastocytosis and they ALL will say that the diagnosis is based upon a BMB and the reason for this is because not enough studies have been done anywhere else as to what diagnoses mastocytosis!!!   I'm not saying that you don't have mastocytosis but then you just might not have it  There are other disorders which will raise mast cells within tissues and it doesn't necessarily mean that it is mastocytosis and this is because mast cells are involved in any kind of inflammatory condition.  This is why they depend upon the bone marrow as the major marker because it's the only place that is CONSISTANTLY used to determine whether or not you have systemic mastocytosis.  

That having been said, anyone who is going through what you are who is showing the symptoms you show and who has proven elevated mast cells in other areas MUST have a bone marrow biopsy!!   The findings that I showed, of some extra mast cells that of 4 and 5 in the intestine and bladder as well as the 11 to the field in my cervix was plenty of enough information for my dermatologist and hematologist to call for a bone marrow biopsy!!   I have a NORMAL tryptase!!!   And yet in spite of the normal tryptase they BOTH felt that my studies warrented further searching within the bone marrow.  Your doctor doesn't seem to be understanding these things.  

However, I do have to agree with the treatment of the aspirin in that this is supported by other studies.  Whether or not the dosage is appropriate is what I have to question.  But I don't agree with it if you've not had your prostaglandins or urine methyl histamine tested!   Heather's right, it's got to be studied FIRST before its taken any further.   He can't base his treatment purely because you're not doing well on anti-histamines.  He's got a good guess going there, but it is dangerous and it's a good thing you're not reacting to the aspirin, but warning, the risk and potential is always there.  

As to that syncope, according to the literature syncope is an END ORGAN REACTION!!   Pdl, this IS ANAPHYALXIS!!   It's probably not being cause by a typical vaso-vagal reaction it may be a neurocardiogenic reaction instead or it could also be vasoplegia.  Not all syncope is created equal as they say and  depending upon how it is, it's very, very dangerous!   I'm the queen of syncope here and elsewhere, sweety and I'm not saying this to be bragging!  I know it sounds weird for me to state it in this way, but we masto patients, independant of whether it is MCAD or SM, we can go through an extremely reaction of this sycope called prolonged syncope.  No other disease in the world does this particular kind of syncope and it's only been studied once!!   It's been seen with some masto patients and it's been noted in several patient case histories, but it's never really been studied in any depth.  Well, I go through this about 2 x a week on average now.  It keeps increasing in frequency and strength and it's a very serious reaction of ANAPHYLAXIS!!   It's what is considered a SEVERE cardiovascular anaphylactic reaction!!!   And this must be very seriously considered in your case.


Yet, lets go beyond that situation here Pdl, cause you are up against a real situation here with that insurance of yours about to run out.  Pdl, I'm suspecting your case here may be that of a very rare form of masto which has only recently been discovered.  I very strongly suggest that you speak with Dr. Akin about this.  I'll bet you anything that Heather will back me when I ask you these two questions...  

DO YOU HAVE HIVES?  
DO YOU HAVE ANGIOEDEMA?


I'm willing to bet your answer is NO.  

If it is no, then I'm suspecting that you may be a clonal-MCAD patient, a form which is only recently discovered!   Dr. Escribano recently published an article about this form and how to differenciate it between the non-clonal MCAD and the clonal patients in that his studied showed that it has 5 major characteristics in that it is more common among:   MEN  there was NO HIVES or ANGIOEDEMA and there were SEVERE CARDIOVASCULAR REACTIONS as well as the other symptoms of anaphlaxis, and patients underwent SYNCOPE!!  

These 5 findings were what set these patients apart from those of cases like Heather's and some others.  This is what my case is showing and I've got to do another BMB and send it off to Spain for Dr. Basson to investigate!!

Now, I think that it's really important that you speak with Dr. Akin and see what he may have to say about this for if he thinks that this could be your case he may say, COME SEE ME ASAP before your insurance runs out!!

However, do not lose hope if your insurance runs out Pdl because you could always get into the NIH with a study they have for Idopathic Anaphylaxis and they will do all of the appropriate studies of your bone marrow and genetic studies looking for this clonal-MCAD form of  masto.  They'll fly you there and fly you home and fully investigate this issue of trying to see why things are what they are with you in that I believe that if they find out that you don't respond well to antihistamines they are going to want to know WHY!!   They know about this study of Dr. Butterfield's and so they will try to find the appropriate answers as to what is going on with you.  So, please, don't loose hope because you CAN indeed get the testing you need as well as the answers without having to be worried about your insurance!

Here's one study, and if you need contact information for someone at the NIH, just let me know and I'll give you the name of the person there.

Don't lose help Pdl, your situation is not hopeless!!!

Lisa

http://www.clinicaltrials.gov/ct2/show/NCT00719719?term=anaphylaxis&rank=2




By the way, I've spoken with the people at the NIH for myself in regards to this study and they told me that I didn't have to worry too much about the tryptase in anaphylaxis or even the hospitalizations or ER sitautions for they know that not all of us are able to get these things done.  What they do need is doctor documentation as to these situations and this is what they are looking for, this is what they told me last year.

04 November 2010 05:53 PM

(Archived message from starflower - original forum)What hematologist have you been seeing??  They might think they're a "mast cell specialist," but it doesn't seem likely given the bizarre medication scheme.  If you don't do well on antihistamines you should be on a mast cell stabilizer.  It can make a huge difference.  Last fall I spent so much time feeling nauseated and dizzy that I seriously wondered if I would have to apply for disability.  Adding Gastrocrom and Singulair (30mg/day) has alleviated 95% of my symptoms.  

Have you had the TMEP confirmed with a skin biopsy?  It's not a very common type, but you could absolutely have it... it does resemble the type of rosacea with visible capillaries (telangiectasias).  

There's an excellent thread in the "Start Here" section about applying for disability.  The label you have (MCAD, SM, TMEP, etc...) is not so important as your symptoms.  A year ago I was feeling disabled by my symptoms... they were seriously interfering with my "major life activities" such as eating, standing, and doing my job.  Here's a nice summary of what "disabled" means:

http://www.eeoc.gov/policy/docs/902sum.html

Now that I'm properly medicated I am no longer disabled by my disorder... even though it's chronic and will probably never go away.  I hope you get to experience the same thing!  Contacting Dr. Akin is definitely a step in the right direction.  Good for you

Heather


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Through the years I have learned
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05 November 2010 06:48 AM