ALS Questions

[ord]

I have had symptoms that concern me since July.  They have included tingling in my right hand, stiffness in the right hand, weakness / stiffness in both legs, twitches in both calves and thighs, cracking in my right ankle and numbness / burning in my toes, especially when exercising.  My  wrists and ankles look very thin to me, but a doctor who looked at them said they look fine.  All of the symptoms come and go (which I understand is a sign that it would not be ALS).  I have also had phlegm in the back of my throat for about three months that won't go away, and have to keep clearing my throat, although I have no trouble chewing or swallowing.  I had a heavy lightheadedness, particularly when walking or after exercise, but after four months, that suddenly stopped.

i was diagnosed with mild carpal tunnel syndrome and was told that the right peroneal nerve is weak or small.  A brain MRI was normal, but the cervical spine showed compression in C 3-5, or something like that.  After the EMG, the neurologist said "You definitely don't have ALS".  However, my concern was that the EMG was done only on the right side.  I also heard that many neuros are unfamiliar with ALS.  I am seeing a well-known ALS expert on Monday.

Can you give me any ideas based on these symptoms?  Can a diagnosis of Carpal Tunnel or a weak peroneal nerve, be missed signs of ALS?  Can the twitches and weakness be caused by the cervical spine issues?  Finally, if a neuro told me flat out that I don't have it, should I just relax or get a second opinion?

Thanks,

[pietiangel]

I had to respond to you, because I feel like you were describing me! I get these really odd twitches like someone is shaking my calves and in the muscle right under my shoulder. I too have very thin ankles and wrists and get cracking in my left ankle alot with stiffness in all of my joints. I have trouble swallowing at times and have a lot of phlegm. I get very lightheaded at times, especially when I bend over or do exercise. Most of these symptoms stay with me though. I have been going through some serious testing for MS because of my symptoms as well. I trip all the time and feel like a clutz. You will quickly learn that most neuro's will give you the run around and it can take years for diagnosis, I have had 3 neuro's and 2 pcp's. I have been dealing with this since July of 04 when my daughter was born. I had an EMG too and it was normal, but I am not sure if this completely rules it out or not. I am sorry that I can't help you more, I just read your post and felt weird that someone explained exactly the same thing as what I am going through. Take Care and remember, always trust your instincts when it comes to your health. Even if it is not ALS you should push for further testing such as an MRI or Lumbar puncture. Have they done any other blood work on you to rule out other possibilities? Also keep a journal of when these things happen and how long they last. You can take it to your next appointment and show them the pattern, sometimes this helps. Let me know how things are going. I am here to talk if you need me, even if I don't have a dx yet. Take care!

[pietiangel]

PS: I was told I had carpal tunnel too back in 2005! Weird huh?