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Back From Ohio (visit With Dr. Grubb)


mrsdavidson8605
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Haven't been on here lately. Things are about the same except my muscle aches are so much worse now. I saw Dr. Grubb and he confirmed what Bev said that I have JHM... I was okay with that until he started to tell me that I may be dealing with this for a long time, as opposed to what I was told before about the 2-5year turn around... so i'm dealing with that. He put me on provigil for the tiredness. Haven't noticed a HUGE difference but have had a bit more energy. Maybe the dose needs to be more... he said that was possible. My other option is the procrit injections now. I'm nervous about the risks and also the big issue that we don't have $10,000 a year.. but if it will make me feel better I think my husband would sell his organs! lol I'm just frustrated, tired (literally and figuratively).. I try to take one day at a time bc the big picture is way too overwhelming. Hope everyone is doing okay..

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I'm glad your appointment went well, and hope the meds make you feel better. :blink:

On JHS------------if you start to have a lot of pain, dislocations, subluxations, you should see if you can find an EDS specialist in your area. It's better to have a geneticist to confirm the diagnosis.

Many people have been misdiagnosed as having JHS or EDS. However, I was misdiagnosed as NOT having it. Fortunately I continued with my search because a couple other doctors suspected EDS, but I wanted to see a geneticist to confirm it.

Three different geneticists confirmed it. Dr. Wenstrup from Cicinnati Children's Hospital (CCH) in 2006, Dr. Brad Tinkle from CCH in 2007, and Dr. Nazli McDonnell from NIH in 2008----but she changed it from hypermobile EDS with vascular involvement, to Classical EDS with hypermobility and vascular involvement.

If JHS is being suggested or diagnosed it's important to get regular cardiac echo's done to check your aorta.

Maxine :0)

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I saw Dr. Grubb and he confirmed what Bev said that I have JHM... I was okay with that until he started to tell me that I may be dealing with this for a long time, as opposed to what I was told before about the 2-5year turn around... so i'm dealing with that

I'm sorry.... it's hard enough to deal with an illness that will last a few years, but even harder when there's no end in sight. I think Maxine offered some good advice about investigating your JHS; when you feel up to it.

Hugs to you, Janie

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