Looking for others with a EDS Dx-

[selmaS]

Hi....I am looking for others that may share the Dx of EDS- Ehlers Danlos Syndrome.

I was Dx with this last week and was wondering what type of issues u have as a result and the treatments u may hve had.

I also have chiari malformation, cervical spinal stinosis,DDD,tethered cord,cranial instability, mild scoliosis and EDS.
And not sure if it's related to ne of the above, but I also have Hashimoto's thyroisitis and a hiatal hernia with acid reflux.
I believe I got them all....oh yeah fibromyalgia.

[sofa weight]

I'm nudging in to this conversation because I saw you have problems with dysautonomia along with eds. My sister and I do too, but she has it super bad. I don't have enough of a problem with circulation to need to see someone about it. I just drink a ton of caffiene and all is good. However, there is a specialist in toledo (I noticed you are in PA) who specializes in folks with EDS with dysautonomia. His schedule is pretty booked, but if you haven't already seen someone who specializes in EDS with dysautonomia (i'm not sure there are a lot of folks who have that specialty), you might want to consider seeing somone. there are a few medications that can really help with the problems with standing up n such.

[selmaS]

Thanks for the info and participating in my poll!! : )

"selma"

[AireScottie]

Found a slightly better website for the neuropathy.  Don't you hate it when you find a great website and then forget to bookmark it?  
http://www.nlm.nih.gov/medlineplus/ency/article/000593.htm
Now, off to your poll...

[selmaS]

HI, thanks for sharing the info.
I also have othe dx's that affect my IBS or bowel issues and am being scheduled for surgery.

I never heard of small fiber neuropathy......I will look into it to see if that is more the reason than the one I am considering surgery for.

Thanks again
"selma"

[AireScottie]

Yes, I too have EDS, but I just joined.  Hey, your IBS and cold hands/feet along with the dysautonomia makes me think you should look up small fiber neuropathy (sometimes mislabeled autonomic neuropathy).  It can be a complication of the hypermobility type.  This is my "bible" on EDS.  They update it faster than I get new symptoms.  http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=eds3.  If the link doesn't work, go to www.genetests.org, click on GeneReviews, and search for Ehlers-Danlos.  It's a lot of info, but well worth the read.  This is where I learned about the small fiber neuropathy, the day before my biopsy came back showing that I had it.  Here's a quick and dirty on autonomic neuropathy, because I can't remember any of the in-depth websites.  http://www.mayoclinic.com/health/autonomic-neuropathy/DS00544

[halbashes]

I'm not sure, but I know there were in the past.  Also too, joint hypermobility is relatively common in Dysautonomia.