J
Reaction score
0

Profile posts Latest activity Postings About

  • Hi jojo,

    Sorry, I didn't see your message until tonight, thanks for posting on my page. I sometimes forget who all I have talked to, ha.

    Gosh, I don't know about those symptoms. It still doesn't quite fit the 'usual' criteria, as I have read. Don't give up just yet. So many other things can mimick als symptoms, you have to keep searching until you know for a fact that it isn't something else.

    I wish I had a better answer, but I think you just have to keep being patient for now, and staying positive.

    Please do keep us posted,
    Steve
    I had my neruo visit with results of emg and spine and thoracic MRI. No lesions. Still have clinical weakness in my leg and I do feel weak in my arm. I have noticed that I swallow a lot of saliva and the lump in my throat along with intermittent hoarseness is still there. Dr. Held off on lumbar puncture and is going to revisit it in 6 months with another brain mri. I know it's crazy but I really feel as though I could have bulbar onset. I get numbness in my tongue and lips. He did not do an emg for the tongue and mouth. Trying not to be anxious but there is something not right with the whole picture. Did blood work and vitamin D was low. Also attributed to als. Any thoughts?.
    Hi Steve,

    Thanks for the reply. The EP's and the MRI of the thoracic and spine were negative. So no MS. However, I continue to have this feeling in my throat that is persistent and very annoying. It feels as if there is a lump in my throat and when I touch my throat it is exremely tight. I also have hoarseness that is getting worse. So this definately has me concerned along with the one lesion and the weakeness on the left side. The weakness has not progressed though. My neuro cancelled the lumbar puncture as he is resolute in thinking no MS. Would the EP's being negative lean towards no ALS? Not sure. Thanks for your comments. I really appreciate it. I have another appt. June 28th as a follow up to the tests. I only got the results over the phone. I just can't imagine what the throat issue is. It's been about 2 weeks now.

    Regards,

    Joanne
    Hi jojo1964,

    Just read your posts. It's very hard to say whether or not someone has als, just by hearing their symptoms. Anything you hear from the membership is purely from personal experiences and personal opinions (although some are very knowledgeable, very few, if any, are Dr.s).

    I know that our 'opinions' may be all you're asking for. And I hope someone can give you a better reply than I am (because I can't possibly tell you one way or the other). My gut feeling is that you don't have als....but how do I know? The brain lesion is the only real connection I can see. The swallowing issues don't seem to have been there long enough to be Bulbar symptoms.

    If it was Bulbar onset, it would not go away, and would get worse.....you would know it. I know this is hard, but anxiety doesn't help a bit. As others would say, try to distract yourself in the meantime, and make sure you enjoy each and every day.

    And, please let us know how it turns out.

    Hang tough,
    Steve
  • Loading…
  • Loading…
  • Loading…
Back
Top