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3 days ago · Living with Neuropathy - Welcome to the group in Neuropathy

I would love the fat part. I weighed between 162 and 168lbs for over 30 years then the wasting part of Parsonage Turner Syndrome and I'm 89lbs. I still can walk but tire easily. Unable to sit for more than a few minutes.

5 days ago · Parsonage turner syndrome * in Brain & Nervous System

I am so sorry for your diagnosis. I was diagnosed almost two years ago. It is a nasty disease with no outward signs so friends and family suddenly do not understand. Unfortunately it was the excruciating pain that brought me to the Drs. After some testing 1 neurologist said I has PTS, then a specialist in ultrasound for diagnosis (can't have MRI due to medical shrapnel in my belly from gallbladder surgery in the 60s) he said it was absolutely not PTS, but mono Neuritis multiplex. Then their was fights between these two on who had the right to tell me what I had. Ok so I have PTS, neurologist said she would send a letter to my primary care Dr. When I went I asked her about the diagnosis. She confirmed she had received the letter so naturally I'm firing questions at her. THEN SHE SAYS…..IVE NEVER HEARD OF THIS DISEASE IF YOU WANT TO LEARN ABOUT IT YOU WILL HAVE TO GOOGLE IT. BUT I PROMISE, we will keep you comfortable. In 2 years my medications have never been adjusted. There is nothing that really works for the pain. I have spinal issues and was already on Gabapentin. Bad bad drug and it does nothing and I have been trying to wean myself off but no success. I take 9mg of hydromorph contin at 9 am and pm. Time release. 2mg dilaudid for break through 2x a day. Prescription is for 4 pills a day but it doesn't work well enough for pain to go through the worst constipation. If you were told there is nothing that works for pain management or disease control it is pretty well true. You are fortunate not to have pain and I pray that continues. My hands feel like they are in boiling oil. When move my shoulders it feels as though someone is twisting the shoulder forcibly. I have a patch on my right hip that burns like my hands. My dad also had this with no pain just numbness and what he described as his hands felt like sandpaper. Good luck as you live with PTS. I continue to pray for all with neurological diseases that some day there will be help for us. I'm now preparing my brain to be commuted to long term care as I'm now in a position where I require 24/7 care.

Sun, Jan 13 1:16pm · Statins cause peripheral neuropathy? in Neuropathy

Thanks John. Haven't had our ground tested but my bedroom was added on to 3 story house but it just has a crawl space. The basement of the rest of the house has 10 inch concrete walls. For some reason radon popped into my head. Thanks again.

Sat, Jan 12 9:03pm · Anyone here dealing with peripheral neuropathy? in Neuropathy

I find trying to get help gets me thrown into the mental ward. Any complaint…..mental ward. Family complaining I end in the mental ward. Crying out in pain….you guessed it mental ward. I feel beyond hope. Denied dying with Dignity because you have to be dying. They will just set a date so you can make sure your family is there. It has nothing to do with suffering. Only for a venue. You must be expected to die within a couple of weeks. No help for any neurological diseases. That's why Robin Williams commit suicide.

Sat, Jan 12 5:04pm · Statins cause peripheral neuropathy? in Neuropathy

In causes it mention toxins does anyone know if radon is one of those toxins.

Sat, Jan 12 3:02pm · Statins cause peripheral neuropathy? in Neuropathy

I was not on stations nor had I ever been when my neuropathy started.

Nov 6, 2018 · Parsonage turner syndrome * in Brain & Nervous System

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.

Nov 5, 2018 · Parsonage turner syndrome * in Brain & Nervous System

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 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