Badges (1)

Groups (1)

Pages

Member not yet following any Pages.

Posts (13)

1 day ago · Parsonage turner syndrome * in Brain & Nervous System

Oh yes, I had 2 EMGs the neurologist I went to after diagnosis couldn’t believe the first readings so I endured a second one his colleague performed, you are so right, absolutely not worth it.

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

I have PTS, I was blessed to be diagnosed 2 1/2 months into it, though it is the most painful experience in my life. I live in the Chicago area and this is so uncommon i have had a hard time finding any info or even neurologists who have treated more than one person. I have the rarer nerves in my arm involved and cannot find a dr who has ever treated a woman with this. Anyway, it slowly improves, sleep when you can, positioning, heat, tens unit, exercise, all help. I still take occasional pain meds, but time heals, slow, slow, so hang in there, sleep sitting in a recliner, only way for a long while. Ive been ill with it 16 months, still have severe denervation, no strength, but i do pilates 3 days a week to keep. Strength,

Dec 20, 2017 · Parsonage turner syndrome

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

Sep 23, 2017 · Parsonage turner syndrome * in Brain & Nervous System

I found positioning and heat helpful. I still have to sleep sitting up a year later. Ice and heat help.so sorry you have this, hang in there, it very slowly improves

Sep 23, 2017 · Parsonage turner syndrome * in Brain & Nervous System

Thankyou, my dr’s don’t know much at all, my neurologist has only seen this one other time. Would that have been seen on a brachial plexus MRI? I’ve had a chest ct also, I will ask my primary , I had abdominal surgery so that’s where they think the PTS came from, but I’ll check that out. Hope you are doing ok.

Sep 21, 2017 · Parsonage turner syndrome * in Brain & Nervous System

I forgot to ask have you had a recent immunization? It can cause parsonage turner, mine was from abdominal surgery no one ever mentioned this rare complication. It is so painful, I am so sad youve aquired this, hang in , there it very slowly gets tolerable

Sep 21, 2017 · Parsonage turner syndrome * in Brain & Nervous System

I also have PTS, I felt your pain literally. I have a rare form, involving medial, radial and ulnar nerves. I’m a year in, all I can tell you is use heat and ice, do you have a tens unit? It helps me get movement in my arm and fingers, I walk but I understand you can’t, time is all the dr’s can tell me, it is very slow and painful, most people recover in a year or two. I was told most of my hand and forearm deficits will be permanent, I refuse that diagnosis, work the muscles you can with range of motion, don’t over work, it is a very long recovery. My heart and prayers go out to you.

Sep 12, 2017 · Parsonage turner syndrome * in Brain & Nervous System

Thankyou for the information, I’ve had 2 EMGs, they were not pleasant, I was lucky the neurologist giving me the first one said only one thing he knew of could read like that, PTS. If my insurance would pay I’d still be going to PT. I do all the exercises, I have been told my thumb, index finger and forearm will never be the same, I just wish this discomfort would get better, otherwise I workout, kayak, work, just a little handicapped.