Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl New Mast Cell Research, Studies, and Trials >> New Mast Cell Research, Studies, and Trials >> Mast Cell and Ehler's Danlos Study http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1351999157 Message started by kimtg68 on 11/03/12 at 16:19:17

Title: Mast Cell and Ehler's Danlos Study
Post by kimtg68 on 11/03/12 at 16:19:17

I wrote to doctor Afrin with my thoughts that I feel I may also have the connective tissue disease known as Ehler's Danlos Syndrome (EDS). I have exhausted my efforts and that of many doctors in an attempt to get relief from the INTENSE joint pain and damage (ie hip labrel tear) and the fairly quick deterioration of multiple joints. I have seen multiple rheumatologist, etc. So Afrin responded that he actually see's many mast cell patients who were diagnosed with EDS (joint hypermobility form which they have not identified the genetic link yet). He said that although it has not been scientifically proven yet, he would not be surprised if they discover that mast cells are behind this form of EDS. He wants me to keep him posted. So I shared all this with my new local mast cell doctor at Vanderbilt. He agrees that I should be tested. He also shared that there is a study going on right now by Sinai and NIH on the possible link between mast cells and EDS!!!!

So 1) I wanted to share this news about the study and....
2) For anyone suffering from this miserable joint pain and feel you might have something above the mast cell situation going on, check out EDS. You never know.

Now although EDS hypermobility is diagnosed based on clinical presentation and possible health history and family health history, I feel the need to pursue this because I have learned that there is specific physical therapy designed for EDS patients. I tried regular PT and I got WORSE! I don't want to continue using opiates if possible and hope with therapy I might regain some of the mobility I have lost.

Hugs to you all!

Kim

Title: Re: Mast Cell and Ehler's Danlos Study
Post by lindasimmons on 11/04/12 at 03:37:30

You should see Dr Brad Tinkle in Chicago or Dr Francomano in Baltimore if you want to be diagnosed and treated correctly
Dr Tinkle has written 2 books available on Left Paw Press, or go to EDNF.ORG for more info
We go to afrin and have ehlers-danlos/MCAD
Linda S

Title: Re: Mast Cell and Ehler's Danlos Study
Post by kimtg68 on 11/05/12 at 02:10:01

Linda thanks so much for passing those names and information on to me. I am going to go to my appointment next week in Birmingham and see what happens. If I do not agree with them and their logic is not backed by some of the NEW and updated research/information I've read, then I will consider making a long trip to see one of the two doctors you mentioned.
Afrin seems to have a strong opinion about mast cells being behind the EDS/hypermobility form. I still want to pursue this in the event they do diagnose me then perhaps I will be able to get EDS directed physical therapy that will help! Apparently just treating my MCAS is not improving my joint issues (in fact just the opposite) so I need to get help some other way! Which form of EDS do you have? How did you get diagnosed? Brighton test? Blood work?
Thanks for your reply.

Title: Re: Mast Cell and Ehler's Danlos Study
Post by tburks on 03/05/13 at 09:38:28

I too have eds and mast cell issues. There are too many of us for them not to have a connection! thank you for trying to promote this awareness! :)