Forum Replies Created
June 23, 2012 at 7:11 am in reply to: New Here – History Of Mvp, Syncope, Pots, Possible Mast Cell #2472
Interestingly I just read a post on another forum that a small study identified a marker that was present in 90% of those with EDS hypermobility type. Science has a lot it doesn’t know about the human body.
My mothers thyroid went during her second pregnancy. Mine seemed to go then too. Tested hypo 6 months later but follow up tests have been all over the “normal” range, including almost high. Based on your description I wold suspect Hashimoto’s.
And whoever told you to suck it up regarding your thyroid is an idiot. Society would never tell a diabetic to suck it up because their body didn’t make enough insulin. There is a great thyroid site. I believe it is Real Thyroid Help. Try googling for that.
Thay reminds me I need to send you my collection. :). Mine are all “normal” too.June 18, 2012 at 9:35 pm in reply to: New Here – History Of Mvp, Syncope, Pots, Possible Mast Cell #2456June 18, 2012 at 8:35 pm in reply to: I can breathe deeply when the tightness between my shoulder blades is relieved!!! #2453
Poor would healing is part and parcel for EDS. I don’t imagine the alcohol helped anything. If you could get it cultured that could help. It looks to me like what horse people call “proud flesh”. The skin and tissue grows granulated like scar tissue. In horses a vet would normally trim away the proud flesh and suture the wound closed. Not suggesting this is the case, but it’s my best “not a dr” guess. I do know there are websites online where you can post a question and a legitimate dr will answer your question. Maybe that would be an option for an educated quick consult and a new perspective.
Damn. I SO want to do this but am already on diamox. I could ditch the antihistamines, but not the diamox. Guess that means I am out, huh?
I had horrendous leg cramps from 12-24. Getting them again now in my left calf. I soak a lot in epsom salts. Magnesium can help. Careful stretching and massage also helped. I also liked BenGay growing up. If you have Dr. Francomano ask her for the specialty formulated cream. It has baclofen in it that helps relax muscles.
Not in my case or my daughter’s. Both born with a full head of hair.
If dragging his feet custom made AFO’s could help. Dr. Francomano was the one who wrote a Rx for me. I would never thought about it but they help a lot and prevent my subtle (when not tired) or bad (when tired) drop foot/scuffing. Those foot scuffls and drop foot led to plenty of falls and many near misses.
Not an expert but I believe so. There is much debate and renaming going on between MCAD and MCAS. One tests abnormally, the other doesn’t and dx is based on symptoms and response to treatment.
Dr. Driscoll? The other half of Dr. Diana. :).
Will read and write more later. I have a child begging me to get up. You are not alone though.
Marfanoid appearance in Hypermobility type is not uncommon. It is also not out od the realm of possibilities that it is Marfans. A genetic test could give insight. I personally believe there is way more muddy water between EDS and Marfans than is generally accepted. I have also heard stories of “short” people having a positive genetic test for Marfans. I don’t height is necessarily a requirement for Marfans but more research needs to be done in believe.
Our ligaments are loose. My neck is straight because my neck muscles are in a constant state of spasm. If neck muscles remained normal or loose I imagine the bobble head effect would amplify. I get it at ims when my neck muscles fatigue. Sucks either way.