LogFAQs > #951306423

Clench281 posted...

That sucks. You taking anything for MCAS? Montelukast/Famotidine/Loratidine?

I've tried a few things but I still need to try more. I was actually hoping to find a good MCAS controlling meds before the surgery but the gallstone is too much of a problem to wait any longer.

So far I've tried rinitidine which made me feel a little bad but didn't seem to improve anything. I've tried claritan which made me very nauseous. I still tried it for a few weeks but then I had a probably unrelated untyped hepatitis and salmonella that I almost died from and ever since anything that makes me feel nauseous makes me feel WAY more nauseous. I'm actually hoping that has to do with my gallbladder and that it will improve after surgery. I had been feeling relatively better during that time but certainly not cured and I'm not sure that had anything to do with it.

Then more recently I've tried famotidine (pepcid) which gave me really bad chest pain and I felt really weird. Tried it twice and then decided it felt too dangerous to keep using. I tried quercetin for a month. That is a mast cell stabilzer. It's a supplement but theres been some research on it showing it can work very well but possibly only for 45 minutes at a time. There really needs to be more research but regardless I tried it for a few weeks and felt a bit bad on it and didn't see any positive change. Then I tried fenofexodine (allegra) for about a week. I got really bad chest pain the last time and stopped until that went away but now I need the surgery so I'm not gonna start on anything until afterwards. It was making me feel pretty bad in general but I don't think the chest pain was related this time.

It's very frustrating to test things because you need to be on most things for like a whole month before you see any benefit and then often times you also need to be on like 4x the normal dose and I'm struggling to work up to even the normal over the counter doses.

It's also entirely possible that MCAS is not doing that much to me and that the real issue is the spinal instability or nuetrient deficiency or some combination. I've also noticed some things that lead me to believe my ribs might be a little bit malformed on my left side, they are clearly not entirely semetrical with the right side and I have symptoms of thoracic outlet syndrome sometimes.

Although really what symptom have I not had at one point or another?

Both MCAS and CCI (my spinal instability) are very rare but a lot of people have both and many of them also have connective tissue problems, most notably EDS which I supposedly do not have. My mother has a connective tissue problem but does not have EDS either so it wouldn't be surprising if thats it. The research hasn't really been done to figure out which is the root issue of the 3 for these patients. It's possible stuff released by mast cells damage the connective tissue which weakens the spinal connection or it's possible a weakened spinal connection sends incomplete signals to the mast cells causing them to be overeactive or that some 4th condition is the real root.

Since all medical research is done on a random scientist's whim though, the research just isn't there which makes dealing with these problems a nightmare as a patient because the medical industry just is not designed to deal with multisystem issues like this.
Mead posted...

Good luck I hope youre able to eat more foods after you heal up

Thanks. I'll be sure to mention how it goes, assuming I can anyway.

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