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Your story sounds way too familiar. I have it in both shoulders arms and pa5in like acid being poured on my hands. I have very little use of my hands although I can now touch my thumbs and fingers. Pointing finger is always pointing. When I was diagnosed with PTS I had been bedridden for 3 years because of pain in my spine from neck to tailbone. I am still unable to sit for more than 5 minutes. So 3600mg gabapentin, 2 x 9mg hydromorphcontin 4 x 2mg dilaudid forbreakthrough pain. We have never changed the meds because these are what the would give me. They help my back but foes nothing for my hands. It came on sudden and has been 18 months. I totally believe my issue is in my neck but I can have an MRI because in my centre chest I had a stentput in my bile duct when the removed my gallbladder. 3 years ago they did an MRI and the stent exploded now there are pieces everywhere and it's more dangerous to remove than leave them there. I feel your pain. I feel so sorry for you. It's a nasty disease. I have already wasted from 168 to 90 lbs.
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@confused1955 I had the same hand issues you mention... "the pointing finger always pointing". I was so frustrated with the doctors because they never seem to care about my hand and the fact that I couldn't use it! My quality of life was miserable! I finally went to a hand doctor on my own... he diagnosed the "pointing finger" as tendonitis due to the extended period of swelling in my hand. Steroid injection and a couple of months of hand therapy and I was able to finally make a tight fist again. Oddly... my finger still feels "puffy" and cannot make a tight fist on its own. If I work it and push is closed with my other hand I can get it there... then I exercise it through the full range of motion... it's painful... I do it 2-3 times a day and yet still 5 minutes afterward and I can't make a fist... I'm going back to hand doctor in a couple of weeks. I suspect there will be a 2nd steroid injection. He also says there is a tendon "release" procedure that can be performed that may help range of motion. I take 1500-1800mg of gaba a day... I've tried to wean back but without success. Desparately do NOT want to be on this drug long term... afraid of dosage creep... You mention you think your issue is neck related... I went for spinal injections when this first all started... the doctor who did the injections completely poo-poo'd the PTS diagnosis... said it was all my neck... so you may be right!! Will say a prayer for you... hope you find relief. JJ