Nailing down my diagnoses – finally making progress after 13 long years!

[martiz]

Please excuse the newbie! I meant to post my first message in this forum not POTS forum.

After 13 years of illness, I was finally correctly diagnosed with EDS. As part of Hypermobility EDS, I was diagnosed with POTS, MVP, gastroparesis, osteopenia, and craniocervical instability. I self-diagnosed with MCAD/MCAS (Thanks Dr. Diana for all of your videos-the Z&Z protocol is helping! My brain doesn’t feel as swollen and my constipation is better! So very grateful!)

Here are the last two things I am trying to track down:
1. CVID or PIDD – I have what feels like a chronic viral infection – chronic sore throat, flu-like symptoms, swollen glands, achey, sore muscles, chronic cold sores.

I have reactivated viruses (HSV1, HSV2, EBV, Var. Zoster, CMV, HHV6A) and chronic bacterial infections (coxsackie, parvo B19, mycoplasma pnem.) Most of these tests were done first through ELISA testing then PCR (the viral ones at least).

2. CCSVI – Dr. Suleman, the EP in Dallas said that the blood flow to my brain was dropping from 100% to 40% during the TTT. He called it a drop in central cerebral velocity. Is this the same thing as CCSVI?

Does anyone have a local immunologist that knows about CVID or MCAS/MCAD (I know about Dr. Castells and trying to get in to see her in May).

What type of Doctor handles CCSVI? Can you have CCSVI even if you don’t have MS?

Thanks everyone for any help and advice. I feel hopeful for the first time in years!
Marti Z.

[martiz]

Hi Issie,
Yes, I recognize your name from the DINET site. I haven’t been active over there as I am trying to track down other related disorders. So much has come of my appt with Dr. Suleman in April.

I know I have hashimotos but in the past, my RA and Lupus ANA’s were negative. I have a feeling that something has changed.

The trick is getting an immunologist to test me. That seems very hard for me.]

I had done the 23andme for my son and Dana and I were trying to figure out a connection between POTS and methylation. Recently, someone sent me a link to EDS and Methylation. Here it is:

http://www.mthfrheds.com/

It’s very interesting but I am not sure that I agree with all of her conclusions.

Thanks for your help,
Marti

[Sunshine]

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