Recent content by planningguy

  1. planningguy

    Undiagnosed.. Read please

    mwrules, I think Joel did a great job of giving you reasons why you shouldn't worry about ALS. I just wanted to chime in really quickly regarding self-testing for Babinski's sign while waiting to see a doctor. Although I'm sure Kohler only has the best intentions for your welfare, testing for...
  2. planningguy

    Thank you for keeping me in mind. No DX yet, just kind of trucking along. Most things seem...

    Thank you for keeping me in mind. No DX yet, just kind of trucking along. Most things seem about the same, but my wrist and hand have been bothering me a bit more as time goes on. I'll head back to the local neuro after some family trips in July. Was going to check in earlier, but I figured...
  3. planningguy

    Is this possible ALS ?

    Elise, Muscle twitching is very common, and happens for a lot of different reasons. When you are anxious, every ache and pain becomes significant. Trust me, get off this train before you get caught up in a cycle of worry. Take comfort in what you doctor has told you, and best of luck. Take...
  4. planningguy

    BethU

    Beth's kindness and patience was always a source of comfort to me. Such a beautiful soul.
  5. planningguy

    update/neuro appt

    April, Thank you for your update. I am so glad the EMG's were clean. Hopefully somewhere there is an answer for what's going on, and hopefully things just start getting better on their own. Best wishes, Robert
  6. planningguy

    worried I have ALS

    I don't think anyone was offended, I just think they were trying to send a clear message that none of the symptoms sounded like ALS. Not a doctor by any stretch, but from what I understand sensory problems and neuropathic pain actually usually point away from ALS. Best wishes, Robert
  7. planningguy

    Burning muscles even in tongue?

    Significant improvement with rest is a good sign. Although some of the PALS on the board still lead active lives, once the weakness strikes a part of the body it never goes away. If your neuro thinks it might be MG, take comfort in that it is a manageable disease. Hope you find out more soon...
  8. planningguy

    Burning muscles even in tongue?

    Jellyfish, I do not have ALS, but just wanted to comment that with your RA results and other comments about auto-immune disorders, that is where I would focus my attention. Are your problems just with your tongue? MG can be pretty difficult to detect, and some suffers don't come up positive...
  9. planningguy

    neuro + pic hand

    Alexandre, Sorry that you feel the need to leave for the reasons you stated, and not because you don't think it's ALS anymore. Consider this if it helps. I'm not sure how your medical situation is, but schedule a consult and an EMG for 4-6 months from now. You're frustrated at the situation...
  10. planningguy

    My tongue is worse

    Michelle, Like April and ktmj, I get them too. In fact, recently I've been getting some pretty strong twitches that almost feel like the tip of my toungue is going to bend. Clean EMG's too. Bizarre, somewhat annoying at times, but not ALS. Take heart. Best wishes, Robert
  11. planningguy

    Where to from here?

    Kansastom, Sorry not to respond to your question sooner. Had a nice weekend away from the computer. My local neuro had homed in on mito disease, but the genetic testing came back clean. The Mayo performed another NCS and EMG, an endoscopy and repeated bloodwork. They decided not to repeat...
  12. planningguy

    Where to from here?

    Rom623, Sorry to hear that you went through a rough spell. I think a number of us have looked into mito diseases at one point or another. Since mito diseases are tied to subtle genetic defects, there are a large number of variations, and they can effect many different parts of the body...
  13. planningguy

    Please advise again

    Mars, There are a variety of reasons that muscle twitching happens, and with many of them (including the benign ones) physical exertion and stress can make the twitching intensify. When I physically exert myself or tense my muscles (when I cough for example) it can start a bout of twitching...
  14. planningguy

    Update on my condition and latest exam...

    CB, Glad to see your update. I have been thinking about you since I was pretty sure the date for your latest exam had come and gone. Will echo April in that so much sounds familiar. I'm glad your latest EMG was pretty much normal. I had a similiar experience at the U of Utah where the Dr...
  15. planningguy

    All Symptoms Point to Als, would appriciate feedback thanks

    Armin, I think I'm only going to end up repeating what others have said, but here goes... "how come an EMG can be normal when even the nuero thought that all my symtoms pointed towards a posible motor condition?" Assuming you had a thorough EMG performed by a trained specialist, your EMG came...
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