My tryptase was normal, and  I'm unable to take any of the antihistamines or CS suggested for treatment of MCAD because of seizures.  In your opinion. is there any need to spend more money on testing if I can't do the treatment?

For my own peace of mind I would like to know one way or the other but since no dr's in my area I'm thinking it would be a waste of time & money to pursue this.  Am I being reasonable?  Thanks.

Thank you!  I was shocked at how much the tryptase test cost.

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Kalle, you first need to ask the question - how much is my health worth to me?  Depending upon that answer is the action you take next.


Kalle, I'm working with doctors here in Brazil to set up a masto Reference Center.  I do a lot of research and as a patient have become somewhat proficient in the disease.  One of the doctors is working right now with a 3 year old child who undergoes szeisures and the neurologist who has been treating the child unsucessfully is finally hearing the mother that something more is going and and forwarded the child to be investigated by one of our doctors suspecting that masto could somehow be behind it.  The doctor referred the mother on to me for my support.  In researching masto and convulsions I have come up with a case which is almost exactly what the mother is describing and we suspect that this child is an MCAS kid in that he has no skin lesions and only gets rashes and small spots with reactions and then it all disappears.  

In trying to find answers, she saw another of our doctors.  The two doctors are disagreeing - the one says, YES this is an MCAS case and the other says NO WAY this is masto.   My money is on the one who says yes because the doctor has about 35 years treating masto and the other doctor is new to the area.  

Yet, the problem is, the testing is coming back negative and the child is reacting to the masto meds.   Only one or two of the antihistamines are working but then the child also has a very limited diet and we suspect that the inactive ingredients are the issue creating the reacting - colors, flavorings, fillers, etc.  

I myself have some pretty rare reacting that I go through and I am still desperately needing answers because my kidneys are becoming damaged and we need to find more understanding to help me gain improvement.  

I don't agree with Peter.  I know it may be costly, but youre health is more important than any object you can buy.  What is the use of not spending your money and you life a totally rotten life and even find yourself housebound or bed bound for the rest of it.  You're giving up way too early and I think that since you need a doctor to tell you that you've come to end of the line that you should not make that decision for yourself.  

You've only begun.  You need a masto specialist and a carcinoid specialist who can take over and do an honest search for answers.    Once they can firmly say you don't have it, then perhaps you can say you are okay.  

Have you have neurologists go over you for those szeisures?  if so, what did they say?  Do they only ocurr with a crisis event?  

You might want to do some googling - szeisures, convulsions, mastocytosis


Hope this helps!


Lisa