Parsonage turner syndrome *

Hi. I am seeing a neurologist and a pain management specialist. I get the same feedback about how rare it is but I feel confident in their hands. My husband is physician and after all his conversations with doctors at Jefferson Hospital in Philadelphia these 2 specialist were considered the best way to go

Thanks!

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.

HI, @adriennes - Thanks for the update. Will you share more about why you think the massage and cupping made things with your PTS worse and why the pilates and walking seem to be working well?

@chriso12345 - how did your next appointment and the EMG go?

@missme - are you still using the compounded cream with lidocaine, guaifenesin, ketoprofen and magnesium you mentioned some time ago? If so, is it helping you?

@lisalucier - next appointment with EMG is Tuesday, November 6th. Symptoms seem to have stabilized somewhat in the last 2 weeks. Arm pain is much better. Pinkie finger is normal. Everything else on right hand is a crazy combination of numb, painfully swollen, and hypersensitive. Started wearing a thin cotton glove wrong side out (seams hurt) to bed. Husband calls me Michael Jackson and that’s okay.

I wear breathable hairdressers black gloves on both hands in the day so that I touch things. Otherwise I can't even touch my clothing let alone remove them. Keeping them warm without being hot seems to work the best. Low barometer readings are killer. Warm summer days best. But to be honest nothing stops the burning. Both baby fingers are totally fine. Ring finger the side next to baby finger is ok but the other side burns. Palm and pads just below my fingers. When it first happened I lost about 60% of the use of my hands. I couldnt meet my thumb and forefinger. Although it's far from usable I can pick up things and I have a spoon will stuff like plumbers wrap around it. Cutlery is to small it falls out of my hands. Some days I can even paint but they are getting less and less since I am unable to get the cannabis oil since Saskatchewan Canada cannabis laws changed.now all that is available is bud which I have to smoke. Couldn't roll a joint if I tried for hours. So here it's all about recreational as they removed all medicinal forms. I was up to a gram a day of RSO oil in a capsule. You just have to swallow. Put the bottle in safe place with other medication and Bob's your uncle. Suffering in Saskatchewan

@chriso12345 - fun that your husband calls you Michael Jackson with the cotton glove you wear to bed. Hope your appointment goes well today and you let us know how that goes.

@confused1955 - that sounds very hard having this burning that nothing stops. When you are able to paint, what subjects do you paint?

I can't paint living things but I love drawing anything that pops in my mind. Some are suitable to paint and some are done in fine delta. I love to draw old houses. My projects lately have been signs for my granddaughter. She likes to read the encouraging to read before hockey games where she plays a great defense position. Again so far this year they have won every game. She likes to share one of her quotes with her teammates, and now that she is in advanced gymnastics she has been asked to help teach the little ones. She always manages to have a quote or a story of how she works to overcome bullying at school. She has no trouble on the ice her team loves her but the girls in school are mean because she likes sports and not fancy clothes or dolls or even toys. Her room is like walking into a teenagers room except she believes in order to succeed you can't live in a garbage dump. Overstate. Sorry. As for my hands in the spring I will try acupuncture if I haven't been put in long term care by then. My husband refuses to work so he can be with me.

I was recently diagnosed with Parsonage-Turner Syndrome and have some questions/concerns about the cause and treatment. My sister was also diagnosed with same thing by a different Dr and was given different treatment plan. We both were at a health spa/wellness center and received acupuncture while there. I started with symptoms 2 days later with sharp, excruciating pain in my right scapula which radiated into my neck. I could not hold my head up straight for 2 days but am now feeling a little better. I did start a Medral dose pack and was given a muscle relaxer as needed. My sister was prescribed same thing as well as physical therapy and an EMG test. My doctor did not seem impressed that both my sister and I had acupuncture and were diagnosed with this syndrome. Is there anyone out there who can shed some light on this unknown condition? Thanks!

EMG showed “significant” / “severe” neuropathy in right hand. Good news? I was given the green light to begin PT and had my first appointment today. Great first appointment with therapist. He suggested buying 5 pounds of cheap rice, dumping in a big bowl and running my hand through it while reading or watching TV. I asked if it was okay to warm first and he said yes. This is so soothing!