1. L

    Whirlwind of symptoms

    Hi all. I'm 27 years old and I've had a rough 1.5 months. I know a lot of this sounds nothing like ALS but please bear with me. Around late January, I began having daily headaches for about 2 weeks (I'm not one to ever get headaches). I began to have a lot of brain fog and head pressure at...
  2. Scotiaspirit

    PEG finally inserted but not without complication.

    I've been waiting since September to have Peg surgery finally on February 22nd 2017 it was successfully inserted just to the left of center in an area just below the rib cage Junctions into the abdominal muscles. The first surgeon attempted the surgery on December 8th 2016 and did not complete...
  3. D

    MND Diagnosis is getting us mad!! pls help

    Hi guys. I am from India and this is regarding diagnosis of my father. He is now 63 years old. It all started about 1 year back when he started complaining about trouble in grasping small objects/ starting car with keys and holding spoons. EMG/NCS confirmed there is a motor nerve problem in...
  4. M

    Complex Case is ALS?

    Hi all - I've read your stickies on symptoms multiple times over the past several months and have pretty much perused a large amount of threads looking for answers. But, I figured it is time to ask the questions here about whether this is ALS I'm experiencing? Symptoms started with back pain...
  5. C

    Should I be on a BiPap?

    At my last ALS clinic my FVC was 66. Three months before that it was 70. The RT asked if I was interested in using a Bipap. I told him it was my understanding that it was best to get it before I needed it to be able to get used to it. He ordered it and it was delivered several weeks...
  6. C

    Another scared person

    I have another 6 weeks before I get in to a neuromuscular specialist, so I'd love to have my mind eased (or prepared for the worst?). I am a 41 year old woman. I was diagnosed with SLE (Lupus) a few months ago. Over 4 months ago, I also started having symmetrical severe weakness and near...
  7. scaredwifetx

    Steve's anxiety over breathing...suggestions?

    This is a question for both PALS and CALS. It is very rare for Steve to talk about his progression and doesn't like to talk about it at all. I could tell something was bothering him tonight so I asked him about it. He actually told me that he was really stressed out over his breathing and felt...
  8. tripete

    Questions; Lunasin and Dr. Bedlack (Duke)

    Since shortly after my diagnosis I feel that I have done a good job at accepting the terminal and destructive nature of this illness, stoic has been used to describe my acceptance of it. Recently there have been many post about the effectiveness of Lunasin in reversing the effects of this...
  9. Grace89

    Peg Pain

    I'm a week into having the peg put in...this has been absolute hell. The Drs waited until I reached a certain weight when I think they should have been watching the strength of my core muscles. I am staying so drugged to just deal with it all. The dr increased my gabapentin and baclofen to help...
  10. chally


    I been getting headaches a lot and the trilogy really helps my diaphragm muscles to relax but just wondering if anyone else still gets headaches even using machine. Maybe it time I am on it 24/7. I don't know, Tylenol helps but I don't like taken lots of it. Thanks love ya chally