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Sun, Jan 27 3:12pm · Parsonage turner syndrome * in Brain & Nervous System

I have PTS, am female and have the rarer form where the medial, ulnar and radial nerves are mainly affected, along with all the others in my brachial plexis, its been 13 months, i am better but am looking for anyone else who also has prolonged pain, denervation, extreme weakness

Oct 28, 2018 · Parsonage turner syndrome * in Brain & Nervous System

So well said, I wish I had kept a timeline, it is so important to focus on what you can do not what you can't, life is very different after this disease, there are ways you can work out, it really helps and takes your mind off the pain

Oct 28, 2018 · Parsonage turner syndrome * in Brain & Nervous System

Hi, I haven't posted in awhile, I've had 3 neurologists, each one having treated only one person with PTS, so after 2 years , I'm still suffering numbness, nerve pain, and weakness, but, in the big picture, I am so very much better! Hang in there, heat works great. Gabapentin I can't go without, but in lower doses I always wear a glove but can't handle compression, just leather, pilates and walking a life saver, exercise with no or little body jarring. I tried massage and cupping, made it worse. I am finally getting movement in my thumb and forefinger. Time, lots of time. I still take painkillers maybe one a week cold air is not our friend, hypersensitivity is what I have now. Just knowing others have this, that I'm not crazy is huge.

Feb 26, 2018 · Parsonage turner syndrome * in Brain & Nervous System

Multiple sclerosis sorry spell check, I feel for you, no one can know how this feels I appreciate hearing from you so much!

Feb 26, 2018 · Parsonage turner syndrome * in Brain & Nervous System

Insurance may not pay but you can write it off at tax time for uninsured medical expenses, I moved to personal trainers because I used up all my PT, I found someone who works with ME patients, she's amazing

Feb 26, 2018 · Parsonage turner syndrome * in Brain & Nervous System

Sounds about right, some days are much worse than others, my thumb drives me crazy as well as my arm. Ive been doing mat pilates and cadillac exercises, i use an oov too, cross training weak side to strong side, retraining my brain to desensitize these crazy nerves. I don't know if it works but when I'm with my instructor I forget about the pain and concentrate on strengthening the deficits. I got my neurologist to write me prescriptions for pilates and massage therapy,

Feb 22, 2018 · Parsonage turner syndrome * in Brain & Nervous System

I really am so sorry, the pain is relentless, I know, I still struggle numerous times a day, but it subsides, time is all I can tell you. It is the worst the first couple months, denervation and atrophy set in on the affected arm, I do pilates with an amazing instructor who is helping me retrain my brain to override the nerve damage and strrngthen that side. Read all you can and advocate for yourself. Dont give up, its a very long illness, i have a 3 level fusion with hardware, the symptoms are very similar to radiculopathy, times 1000! I got through the worst of this with a doctor open to whatever she could do. You are not alone, you found us here, bless you, I'll keep you in my prayers.