allie/chase dad

Hi Steve,

May 1st had abnormal EMG and neuro said it wasn't ALS yet couldn't explain my muscle twitching all over my body. Had MRI and all blood tests to rule out other possibilities. In the report he totally ignored my other symptoms of weakness in my legs, recurring muscle cramps in both lower legs and feet that I've never had in all my life. Also have lost muscle.

However, during Memorial Day weekend I took the family camping and on the first evening hopped on my bike and only went half a block, if that, and experienced burning in both upper thighs.......typical of what you might expect after sprinting up a hill. I felt like I was in 10th gear and going up hill but was on level ground. I chalked it off and would see how the weekend went. Long story short it never subsided and was difficult for me to keep up alongside my boys! I joked I was getting old.........I am 49 Would like to get 2nd opinion but from an ALS Clinic.


Take care!!

Welcome to the forum, Steve. I hope you can take what you need from the forum and ignore the rest. This place has been a lifeline for me and a font of information. Good luck with your appointment at the Cleveland Clinic.

Hello Steve. There is absolutely no link between Parsonage-Turner and ALS. There was one case of a woman that had Paronage-Turner and then later developed ALS but it was completely by chance. Given the proposed etiology of Parsonage-Turner (most likely autoimmune in nature), it doesn't surprise me that your immune system decided to affect a different area of your body. On top of that, there is a roughly 25% chance of a relapse within a few years. Take solace in the fact that you recovered from your initial neuropathy and it's my guess that you'll recover from your present one. Do your best to be patient and look forward to getting better. Please feel free to write when you feel the need. Take care.

Thanks for the tips. I will remember and may use them in future. It's difficult to explain to others the pain of waiting. Ive seem many many difficult things in my years in Medicine. This waiting is not an ordeal I was familiar with.

Just a couple of thoughts. Mestinon at low dosage (.5 tab tid with food ) has knocked the faigue down. Aslo, final EMG, I took a good sized dose of hydromorphine and Xanax. Neuro said it doens't block or change results and it sure made the damn test more tolerable. And the ALS clinic docs are more thorough and not distracted. Good luck...Hollister

Allie I am so sorry your in this position. i just say its hell knowing something wrong but no diagnosis
i have bloked evoked potentials . protein in spinal fluid atrophy in my feet, walking difficulty stiffness in my back brisk reflexes , emg results with irregular recruitment but they say normal
been to 3neuros in the UK . I really dont undersatnd why the neuros are so reluctant to give people a pointer . It seem they wait till its so obvious that most other people could guess what it is
why do we have neuros at all.
i do undersatnd your stress and anxiety but it is a sit and wait game . best wishes from the uk