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I wanted to get on to help. I am an RN and my husband has Parsonage Turner Syndrome. He was diagnosed at Mayo 20+ years ago. It affected his brachial plexis nerve. He recovered about 90%. However the right side of his diaphragm doesn't expand well. His right arm which was completely atrophied recovered. We've been married 14 years, so I didn't experience this with him at the time but noticed the residual. A couple months ago, in May he was hopitalized because he quit breathing. The Doctors ran so many tests and the only diagnosis they could come up with was hypoxia. What they missed was he had a virus which he almost died from which in turn set off his Parsonage Turner Syndrome. All the pain in his right arm, across his abdomen and in his lower back were results of this. It didnt occur to me at first but I specialize in pain management and this was nerve pain. I contacted his doctor to start Neurontin (Gabapentin) right away. It works miracles. His pain is under control and he continues to try and use his right arm so it won't become flaccid. What is sad reading, is that doctors are using narcotics and and not medd for nerve pain. Neurontin, lyrica, antidepressants work for nerve pain. Put your doctors on the right track so you can get relief
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Hello @mydolly, welcome to Connect. Thank you for sharing what has helped your husband and how important it is to be your own advocate and work with your doctors on a treatment plan. Sometimes narcotics and non conventional treatments are the only thing that works for nerve pain which is probably one of the reasons we have a opioid crisis in this country.
I have no medical training or background but have done a lot research on pain drugs and when they work, they are great for the patient. Unfortunately prolonged use with higher and higher doses to deal with the nerve pain has a lot of bad side effects, including brain fog. I'm fortunate because the nerve pain drugs do nothing for my small fiber peripheral neuropathy because I only have the numbness and tingling for symptoms and not the awful pain. Not that numbness is good ☺ My hope is something that addresses the cause of nerve pain, damaged/dead nerves which the gabapentin, Lyrica and other pain meds do not address. The meds just focus on blocking the pain signals in the brain and not fixing or repairing the nerves. I think the real hope is in stem cell treatment if and when they can figure out how to make it work for the nerve cells. Until then, like you mentioned, we need to work with our doctors to get the needed relief.
John