Hello, new to forum

[nygal]

Hello everyone! I am new to forum and would like to share my story and hopefully gain some insight . My medical history is quite complicated and I will start by saying that I have had neurological issues since I was a teen. Started with seizure like episodes and then progressed to balance and visual problems. I have been under the care of a neurologist since age 33 and I am now 53 years old. In 2012 I noticed that my stamina had decreased and my right arm was feeling heavy . I began dropping things. No real weakness. In March of this year I felt quite ill and could not really figure out what was happening. I found both my legs "did not quite feel right". They felt weak when standing in one spot but I found relief in moving around. I fell down a few steps that weekend and that prompted an emergency visit to my neuro. He examined me and found no clinical weakness but brisk reflexes. Suggested I wait a few weeks and have a return visit. In the interim I developed fasiculations in my one calf which progressed body wide within days with bilateral calf cramping . Upon follow-up he immediately referred me for an EMG and nerve conductions studies. The fasiculations were seen on the EMG along with nerve root irritation at
L5-S1. this finding correlates with an MRI finding of a herniated disc and some other issues in that area. No other findings. He deems this a "normal" EMG and suggests that there is no evidence of ALS and does not suspect motor neuron disorder. Apparently the NCS showed a neuropathy which we were aware of prior to the study. I am accepting of his diagnoses or lack thereof . My concern is that my legs cramps are getting steadily worse and the fasiculations are nonstop. I will follow-up in 5 weeks time and would very much like a follow-up EMG to confirm the initial findings. I have had lab testing for any other possible cause for the fasc's and cramping and all is normal. My neuro is affiliated with a hospital here in NYC where there is a top ALS Doc just an elevator ride away. My neuro said that if he suspected motor neuron disorder that he would have given me a referral to see this physician. Would I be out of bounds if I requested that referral . My gut tells me to listen to my long time neurologist and let him handle this. Not sure what would change if another doc looked at the same results. I have read quite a few posts on the board where it has been recommended to see an ALS specialist. I am taking 300 mg of gabapentin at bedtime and using a muscle relaxer left over from a back problem. I am not getting much relief from either drug... Thank you all for listening and would appreciate any and all feedback.

 

[Clearwater AL]

In a recent Thread you commented that no one replied to your Thread here but as you wrote here,

("This finding correlates with an MRI finding of a herniated disc and some other issues in that area. No other findings. He deems this a "normal" EMG and suggests that there is no evidence of ALS and does not suspect motor neuron disorder. Apparently the NCS showed a neuropathy which we were aware of prior to the study. I am accepting of his diagnoses or lack thereof . My concern is that my legs cramps are getting steadily worse and the fasiculations are nonstop. I will follow-up in 5 weeks time and would very much like a follow-up EMG to confirm the initial findings. I have had lab testing for any other possible cause for the fasc's and cramping and all is normal. My neuro is affiliated with a hospital here in NYC where there is a top ALS Doc just an elevator ride away. ***My neuro said that if he suspected motor neuron disorder that he would have given me a referral to see this physician. Would I be out of bounds if I requested that referral . My gut tells me to listen to my long time neurologist and let him handle this. Not sure what would change if another doc looked at the same results.")

No sarcasm here but you presented your situation... then pretty much summed up the situation yourself. None of us being doctors we really couldn't go beyond what you were told by your doctor other than "yes" get a second opinion which you also implied. Maybe ask a few more specific questions.

 

[nygal]

Hello,

Thank you for your response and no sarcasm taken...

After re-reading my post, I realize that I did not pose any specific questions and I have read many other posts and all the "stickies". Will follow-up with neuro. Thanks again!

NYGAl