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Posts (7)

Feb 20, 2018 · HELP! Unlawful doctor in Bones, Joints & Muscles

Hi @findinghope23 , Have you looked into Ehlers Danlos Syndrome? The Ehlers Danlos Society has good info. There is the hypermobility type and it’s very under diagnosed.

Dec 29, 2016 · Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS) in Autoimmune Diseases

I never met or saw Dr.McDonnell, but was directly involved with getting her involved in an emergency situation with a friend with vEDS. I wish she was still at the NIA/NIH, she did such important work!

Dec 28, 2016 · Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS) in Autoimmune Diseases

This article has good info about the hypermobility type of Ehlers Danlos Syndrome: https://www.ncbi.nlm.nih.gov/books/NBK1279/ Note: there are other types such as vascular and classical just google genereviews and Ehlers Danlos. The diagnostic criteria for EDS is actually being looked at for revisions by the experts internationally and last I heard they were planning on publishing it in the spring.
Physical Therapy can be an important piece of treatment, especially manual therapy and closely monitored exercise to help increase strength to support the hypermobile joints. It can be very slow going, but very helpful.
I have found some wonderful physicians at Mayo in FL to be part of my treatment team (especially for headaches and PT).

Jul 31, 2016 · Searching for Adults living with scoliosis, thoracic stenosis in Spine Health

Thanks! I see Todd Rozen in Neurology

Jul 31, 2016 · Searching for Adults living with scoliosis, thoracic stenosis in Spine Health

Hi, I was diagnosed in 2008 along with my son who was 22. We realized my mom, who passed away at age 51 had also had it. Although my issues were lifelong, sprains, ribs out of place, easy bruising, bad proprioception (walking into things), stretchy skin, etc, I was called double jointed and didn’t think too much of it. My son had pectus excavatum surgery at age 6 and was very hypermobile and also has IBS and headache issues. He was referred to genetics where Marfan’s was considered (he’s 6’7″ tall). I was being seen in Rheumatology at the same time and we figured out we had EDS by looking at all the symptoms.
My biggest issues now are instability at C1/C2 causing chronic migraines and neck pain. An auto accident didn’t help. Also, I have major issues with my pelvis and SI joint. Working with a headache specialist has been very helpful, so I was happy a very knowledgeable one is now at Mayo Jacksonville.
A group of International EDS experts met in May and are reevaluating the diagnostic criteria for all types of Ehlers Danlos Syndrome with the results to be published Spring 2017.

Jul 29, 2016 · No where to turn for answers: Headaches, body pains, slurred speech in Brain & Nervous System

@JeyLei , I have EDS and some of the same symptoms, especially the c1/c2 instability, SI joint issues and the chronic migraines. I don’t know where you are located, but there are some fantastic headache specialists at Mayo. If I were you, I’d push to get your wife evaluated by one of them. There are experts in AZ and FL, for sure.

Jul 29, 2016 · Searching for Adults living with scoliosis, thoracic stenosis in Spine Health

You may want to look into and consider being evaluated for connective tissue disorder (Like Ehlers Danlos or Marfan’s,etc) due to clues such as hypermobility, scoliosis, vit D deficiency, headaches. My scoliosis isn’t too bad, but my ribs don’t stay in place and muscle imbalance follows. PT has been helpful for me also, especially manual therapy and exercise to strengthen weakened area. My pelvis is an issue too. Also, heat and sometimes ice helps some. (I have Ehers Danlos Syndrome).