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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> why bother with more testing http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1402091025 Message started by Kalle on 06/06/14 at 10:43:45

Title: why bother with more testing
Post by Kalle on 06/06/14 at 10:43:45

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.

Title: Re: why bother with more testing
Post by peter on 06/06/14 at 18:11:11

Hi Kalle with tryptase of 60 and a diagnosis of systemic mastocytosis it's the same
Big $$$ for nothing
And will stay that way while the symptoms of mast cell disesse are called
Anaphylaxis or reactions over 5 years it costs me my life savings so be cearfull

Title: Re: why bother with more testing
Post by Kalle on 06/07/14 at 01:43:41

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

Title: Re: why bother with more testing
Post by sarahkay1111 on 06/08/14 at 02:09:48

Hey Kalle--I'm not sure what to do. I feel kind of the same way. I have seen both specialists at Mayo with not much luck, and no answers. I am going to make an appt with Dr. Afrin however, because I would like to be on ketotifen, so I need some advice. Are you sure there is nothing you can do? And have you tried all of the meds that you CAN take? I wish you luck and wish you well:)

Title: Re: why bother with more testing
Post by Lisa on 06/08/14 at 06:22:44

wrote on 06/06/14 at 10:43:45:

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

Title: Re: why bother with more testing
Post by zippy890 on 06/09/14 at 02:51:28

I sympathize with this person over $$$. I have to husband my money very carefully. And I wonder about having access to any possible (better) future therapies and tests, which will do me no good if I'm without any money. It's very tough. I have no answers. :(