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Mon, Feb 18 2:05pm · Parsonage turner syndrome * in Brain & Nervous System

Have tried every over the counter med everyday for 6 years. Went off all stated lactalose a month ago still nothing. 2 weeks ago I started constella nothing. All I have is a leaky discharge with gas about once a week. Dr got involved 2 weeks ago but in the last two weeks I can hardly breath because stomach and chest is so distended. Will Be seeing Dr. Thursday afraid he and my medical team aren't going to wait until the end of March before they demand long term care.

Mon, Feb 18 1:14pm · Parsonage turner syndrome * in Brain & Nervous System

Those of you on narcotics for pain how do you keep your bowels moving. I had to stop mine and am taking several types of laxatives but I've been 34 days without a bowel movement. If this new set of laxatives don't work by the end of March I have To go into long term care. My medical team have tried to keep me home but without my bowel working and my pain under control the team gave me 60 days I have 40 days left. Anyone out there find a laxative that actually works.

Wed, Feb 13 1:11pm · Gaba Lyrica Addiction in Neuropathy

I've been on Gabapentin for years. Started at 100mg per day now I take 3200 mg a day. I tried tapering off a year ago. I dropped 100mg a day for 2 weeks then another 100 for 2 weeks etc. I got down 800mg per day and started having horrible withdrawals, headaches and twice as much pain from the neuropathy. So slowly I started adding them back managed to stay at 3200 from 3600 per day. I tried a 90 day treatment with RSO/Rick Simpson OIL. It seems to be helping many cancer patients, epileptic, people with ME and ALS however it didn't help me in anyway. I vape oil before bed because it helps me sleep through the pain. I was taking 4 2mg dilaudid but constipation is so bad I dropped 2 and just suffer with the pain because the constipation is so bad I have 60 days at home using all these different laxatives, if that doesn't work I have to go to long term care. They have wanted me in care for 2 years, i guess I'm going to loose my fight because this newest laxative is not working at all and I'm taking it as well as lactulose. Still no luck. Good luck. Pray that they find a good drug for neuropathy pain. Gabapentin is for seizures but is the only thing that helps. It is very addicting but ive never gotten high. Maybe you have to take the whole until I was in the middle of it I did not realize how terrible diseases of the nerves are. There is no real tests to confirm and no medication for the pain and no professional can understand the pain unless the have the disease. I believe mine is chronic Lyme but doctor's have identified it as a rare disease called Parsonage Turner Syndrome.

Wed, Jan 30 11:52am · Parsonage turner syndrome * in Brain & Nervous System

I get little relief from anything. Have been suffering with burning in my hands for almost 2 years. Mobility and strength have improved enough my thumb and pointing finger now meet again and I can pick up a pin. Not much else I can do cause when I touch anything the pain triples. I wear latex gloves periodicly throughout the day. It keeps my fingers from touching. I can touch my hair and the towel so I'm able to wash my hair. If I didn't have 8 other serious diseases maybe this one thing wouldn't be so bad. Stress seems to be the worst stresser. Good luck on your continued healing.

Sun, Jan 20 3:41pm · 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.

Fri, Jan 18 2:06pm · 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.