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azmusiclover

Follow Up With Dr Goodman

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I saw Dr Goodman today. He has a few more gray hairs this time, but had on a very nice suit and tie. He is very pleased with my progress and we talked about what I feel has helped me to pull through this flare.

He went back down the path of mast cell with me and talked about how in the last few months since I had last seen him, he has seen so many more patients who present with hyperpots, EDS/joint hypermobility and have mast cell symptoms even with testing not showing. He said I completely fit the profile and since I am already doing partial mast cell treatment and feeling much better with it and doing better he believes I have a mast cell disorder. Quite a change from last time I saw him! I was pretty sure mast cell was an issue and he wasn't as sure.

Treatment we are starting is Allegra, higher dose Pepcid and Cromolyn. He said I can continue to use the benadryl daily since it helps me. He is hoping that I will do even better and that my GI symptoms will calm down too. He also wants me to continue the PT since that has helped me significantly.

We talked too about autism and POTS. He is working with some other doctors trying to get funding for research on autism and orthostatic issues and autonomic dysfunction. My son just turned 12 and is starting to show some signs of OI with puberty and thankfully his pediatrician was happy to have us see Dr. Goodman. I should be getting my son in to see him this summer. He said he was looking forward to it.

Great appointment and I am pretty happy with the path we are on. Not thrilled about joining the mast cell club, but I have suspected it since I first read about it on here. He told me to follow up in 6 months!

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Yayyyy, for you. That treatment has helped me a lot. Hope you get good results too. I'm glad Dr. G is treating us even without complete scientific proof. Has made a difference for many of us.

Issie

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So glad to hear good news! I hope this puts you on the upswing and I hope that your son seeing Dr. G will save him a lot of grief that so many go through.

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