Parsonage turner syndrome *

Where there is life there is hope. Anne Frank.

My brother was a top administrator at Moffitt Center. He witnessed miracles there. It is a world class center for cure. Dr. Ron Rubenzer. Your well-being is my commitment.

since my last update on PTS, i have been going for physio and have been told on my last visit that there is nothing more that can be done for me. so i went home and started my own exercises doing wall climbs etc. what seems to help is push ups. i have been following Chris Drake on youtube. he highly recommends push ups. i can barely do 1 because of the pain and arm/shoulder weakness so i do something called "girl push ups (using your knees intead of the feet). also i have started with planks. it is very slow but progressive. i was prescribed lyrica meds but have read that the side effects are dangerous. so i have not been taking any pain or nerve medication for the past few months and deal with the pain on a day to day basis. i have slowly stated to move my am towards my head. with pain and some difficulty i have been able to do some movements above my shoulder. everyday i try grabbing the top of the wall which is about 2 meters high with just my affected arm. i do this for about 3 or 4 times depending on how puch pain i can tolerate. the muscle waste is still there as well as the numbness. i still do not have most of the range but have been making slight progress in terms of raising my hand above my head. the outwards range is still very painful and difficult. i guess we have to take things 1 day at a time and keep being positive.

Good to read your update, @yaseen786. That is terrific that you've started your own exercise program. Kudos to you.

You mentioned being prescribed pregabalin (Lyrica), but have not taken it due to side effects you've read about. If you wish to talk with other Connect members about this medication, here is a discussion on it: https://mayocl.in/2OfhO7M.

In addition, here is some information Mayo Clinic has available on pregabalin (Lyrica), if you'd like to read it: https://mayocl.in/2vJb5vp.

Has the numbness you mentioned before in your pelvic area and arm remained constant, or is it getting any better or worse?

hi @lisalucier. thank you for your support. the numbness in my arm remains however in my pelvic area it seems to have lifted a little and does not trouble as much a it used to. it is mostly at night when i feel the pain on my pelvic side. i have been really pushing my arm to do some extra stretches. it does help but still alot of pain.

I was diagnosed with Parsonage Turner Syndrome December 2005. My neurologist informed me that in most cases it will go away within a year or 18 months. He said that if lasted longer than that I would probably have it for life. This is a pretty cruel sentence. I have suffered with the pain that everyone else has described for the past 13 years. It has had a huge effect on my life style because when you are having a pain day, you just do not function. I will have some very good days and then for some reason I get a flare up and I cannot get any relief. I find that sitting up right with my affect arm folded over my chest and my opposite hand supporting the elbow is my relief.

Massage Therapy was also helpful - even if it just provided a short period of time when I could take my mind off my pain! My therapist would take the time to massage my hand - it would be so painful but also felt so good if that makes sense! I haven't tried acupuncture yet...

Well... I had another appointment today with a neurologist referred to me by my neurosurgeon. The goal was to have another opinion on whether I have Pasonage Turner. So... he did a reflex test on my arms which had unexpected results. My bad side had MORE reflex than my good side. He said that if I had nerve damage we would expect LESS reaction not MORE. He then stated matter of factly that this was a sign of a central nervous system or a brain problem. So now I'm scheduled for a brain MRI to rule out that possibility. I will have another nerve conduction study this Friday also(oh joy). The one I had back in May was apparently too soon after the onset of pain to be a reliable result. I'd be very curious to know if others with PTS have had reflex tests and what the results were? I'm trying not to worry about a potential brain tumor - but that's hard to take your mind off of!! The next step after this would be a MRI of my shoulder looking for inflammation that could explain the pressure on the Median nerve. ALSO... he stated that the spinal injection I had in July may have done some good since the steroid may have affected nerves in the brachial nerve complex. So... I'm scheduled for another spinal injection in 2 weeks - I had been debating about whether to go through with it, and based on what the neurologist said today I will do it!
@patrick17

Dt0958, thanks for sharing your story. I’m sorry you have suffered from the pain of PTS for so many years. You are right; it is a very cruel sentence. I hope you find something that will lessen your pain and get you back to enjoying life again. I’ve just reached the 18 month mark. I have 7-8 level pain in my right arm from my elbow to my finger tips. Recently, I’ve had some relief for a few hours when the pain decreases to about a 5. That’s so nice! The fog I sometimes feel from the pain meds is almost as bad as the pain itself. I’m always looking for answers to this condition. I tried acupuncture for 5 sessions. That seemed to worsen the pain, especially one time when she added electrical stimulation to one finger. I am also having cupping done. I’m not sure if that was the reason for a lessening in my severity of pain. I’ll probably try it a few more times. Fortunately, the cost is reasonable where I go.
Next year I will probably switch from a Medicare Advantage plan to Medicare. It’s been great having $0 premiums, but being restricted to certain doctors isn’t good when you have a rare medical condition.

jjspokane61, it’s good your doctors are looking for answers to o your condition. It sounds like you are in good medical hands. My first neurologist sent me for a brain MRI when I first saw him. Fortunately, everything was “normal “.I also had a lumbar puncture which also had no abnormal findings. I almost wish I hadn’t had the lumbar puncture done since that was an invasive procedure. I think my neurologist was mainly looking for MS and didn’t find it. He never mentioned PTS. I’m not sure why not. My second neurologist immediately put that on the list.

I have not had a reflex test done so I can’t help you there. I have tried acupuncture without success and am still going for cupping at present. After 3 sessions I can see a difference with the cupping circles, but I’m not seeing a big difference in my pain level. I’ll try it a little longer and see if there’s any positive results. Thanks for sharing about your spinal injection. I hope it helps you. My doctors have not mentioned this. I’m looking for pain relief OTHER THAN FROM MEDS! I will read about this and mention it to them. Good luck with your EMG test. I hope it’s not too painful!