Parsonage turner syndrome *
I was diagnosed with parsonage turner last November after 2 months of agony, while I am able to function now, I'm still experiencing severe weakness, numbness, pain, this is unusual im told, but having it as a woman is unusual also. Does anyone have any experience with this?
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Hi, @josebaltierraii - welcome to Mayo Clinic Connect. A key intent with Mayo Clinic Connect is just as you said: to help members feel comforted knowing there are so many people out there who know just how you feel. Patients also "know things" from their journeys and are able to help out fellow patients with the same or similar condition a lot.
That is very unfortunate that the pain and spasming came back in a shooting, burning manner.
I think that some of the other members with PTS here in this discussion will have some thoughts on how they use gabapentin and whether they instinctively take it when having an episode. Please meet @tmachian @patrick17 @jjspokane61 @scout138 @confused1955.
Sounds like you are not wanting to go through the process of getting a referral and all that involves to get your latest symptoms treated. Have you thought about perhaps messaging your doctor through a secure portal or calling his or her office to speak to a nurse, @josebaltierraii, for what he or she would suggest for gabapentin use when you have an episode of your PTS?
@petemidd - how is your left arm doing? I believe that you were looking for input on how you could help your doctors recognise your condition because it doesn’t fit typical symptoms, and also get your strength back. I'm hoping some of the same members I tagged will have some insights for you. Just to confirm, @petemidd, do you have a confirmed diagnosis of Parsonage Turner, or are you strongly suspecting that you have it?
Have you had your thymus imaged. Strange as that sounds when the doctor discovered that I had a thymoma and it was removed my
Pts resolved. Thymoma is often related to autoimmune issues, though there are no studies with respect to pts.
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.
Hi @confused1955, I'm not taking any narcotics but from time to time I have severe constipation and use Metamucil which contains psyllium fibre. I mix a a couple of teaspoons in an 8 oz glass of water and drink it in the morning. It usually helps me go within the day. More info about it here:
https://chealth.canoe.com/drug/getdrug/metamucil
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.
@painful sorry to hear about PTS. Are you on something for nerve pain. I was on nortriptyline for a time and there are many others Drs. can prescribe? Also, I wonder if different supplements might help things like turmeric, quercetin / rutin, other lipoflavins, resveratrol and different combinations of supplements. You can buy these on Amazon or at a vitamin shop. I also take a little hemp seed oil (not CBD). I do think these made a difference for me somewhat in pain level for hip and back pain I have. Some might make pain worse, some better. It might help somewhat with nerve pain.
Parsonage-Turner Syndrome (PTS), also referred to as idiopathic brachial plexopathy or neuralgic amyotrophy, is a rare disorder consisting of a complex constellation of symptoms with abrupt onset of shoulder pain, usually unilaterally, followed by progressive neurologic deficits of motor weakness, dysesthesias, and numbness.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2926354/
Just for information.
Regards, ElaineD
Hello @kimchi19, welcome to Connect. There is another discussion with the same name where your question will receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion:
> Groups > Brain & Nervous System > Parsonage turner syndrome *
-- https://connect.mayoclinic.org/discussion/parsonage-turner-syndrome/
I'm sure it must be difficult to be told to wait 2 years to see if a symptom will go away. Have you thought about getting a second opinion?
Yes, I'm flying to Houston to see a neurologist who specializes in PTS to either confirm the diagnosis or rule it out.
My symptoms are possibly PTS. I had ACDF level 2 surgery Feb. 28th and 3 nerve conduction studies by 3 different neurologists. My left thumb lost all flexion ability 1 month prior to surgery and remains unchanged. My right thumb is weak but still functional. Told to wait 2 years and it may go away. Does anyone have any experience with this disorder?