Connective Tissue Disease?

[jazzlover]

See number 12

http://strengthflexibilityhealtheds.com/2015/09/03/diagnosing-mast-cell-activation-syndrome-mcas-post-1-of-4-in-series/

I know several of you have mentioned Connective Tissue Disease .. maybe there is more than that going on.

[irish]

I don't know the whole list of connective tissue disorders right off the top of my head, but Sjogrens, lupus, RA, Scleroderma, etc are on the list. The mast cell issues can occur also and we have a couple of people on this site who have a diagnosis. Generally, the mast cell issues sort of ramp up what is going on with a persons body and after ruling out a few things doctors and are slowly learning to check out the mast cells.

This is one of the reasons that I recommend people seeing an immunologist, hematologist or an internist at one time or another. Sometimes a family doctor likes to dabble in autoimmune diseases but if things get too complicated they often recommend us seeing an internist. Thanks for the info. Irish

[jazzlover]

I think you are correct. I wish there had been diagnosis and treatment for this many many years ago. It would have saved me a lot of grief.

I think anyone/everyone with an auto-immune disease should be checked for it. Sadly, most doctors don't know how to do the testing .. and the lab issue is even worse.

I just got lucky.

[Sharon]

True, it's difficult to get a diagnosis for MCAD.
I never got mine. They would only give me the tryptase test and I wasn't flaring when it was taken.
When I was on Prednisone it helped with all the mast cell issues as well.

[jazzlover]

The 24 hour urine test for histamine is the one that is the most likely to come back high. The tryptase is usually only high if you have Mastocytosis.

[Nymph]

Yes, I have MCAD. Allergic symptoms all my life along with POTS, but got worse in my early 20s when things started to go sideways. Some joint hypermobility so probably a genetic predisposition to all this which also makes autoimmunity more likely, and that runs in the other side of the family.

[Sharon]

That is true Jazz, but they don't have that test (and many others) available where I live.

[jazzlover]

Yes, I have MCAD. Allergic symptoms all my life along with POTS, but got worse in my early 20s when things started to go sideways. Some joint hypermobility so probably a genetic predisposition to all this which also makes autoimmunity more likely, and that runs in the other side of the family.

Many with MCAD also have POTS and EDS .. If you have hypermobility, you need to be checked for EDS .. unless you already know that!

[Nymph]

Yes, I might have EDS. It seems to be a mild case if that's what it is. I have not sought dx.