Recent content by ltd17

  1. L

    Eyes in ALS and double vision

    Hi guys, it's been 2.5 years since my mom got a diagnosis of probable ALS but cannot exclude MG, it's all very complicated. There was a partial response to medication for MG but there is still progress. Legs are strong and not affected. Recently they did a SFEMG of the eyes, which showed...
  2. L

    Sorry to hear about your diagnosis :( I saw you were looking for RCH4, hope you find it. Have...

    Sorry to hear about your diagnosis :( I saw you were looking for RCH4, hope you find it. Have you looked at the lunasin products by reliv? Seems it helps for some and doesn't for others. Also check out deanna protocol.
  3. L

    Peak cough flow variation in ALS

    Oh Karen and Laurie , I sure hope so, C5 innervates the deltoids which could explain the atrophy. Karen as an MD would probably know this better. And then the narrowing could explain the progression of hyperreflexia. It's also symmetrical and proximal, and flail arm syndrome would of course...
  4. L

    Peak cough flow variation in ALS

    Thanks for your reply Karen! The thing I hate about statistics is that the 1% chance of winning the lottery is always against you, but the 1% of having a rare or shitty disease is the one you win lol! We stopped Riluzole after the diagnosis was changed in August but now that it's unsure again...
  5. L

    Peak cough flow variation in ALS

    Thanks for the link Laurie! I have read that article before, I noticed in thew articles about MG and ALS that there was not 1 patient with resp. onset ALS and MG. Most were limb or bulbar onset and often the ALS symptoms started in a different limb or area then the MG. Mayo said my mother...
  6. L

    Peak cough flow variation in ALS

    Laurie or anyone else, are there any forum members here that got diagnosed with both ALS and MG? It's very rare but I am wondering. I know Schatzie (?) was diagnosed with ALS and then the diagnosis was changed to MG after her response to mestinon but I am wondering if there is anyone that has...
  7. L

    Peak cough flow variation in ALS

    Yes it was ruled out, no antibodies were found!
  8. L

    Peak cough flow variation in ALS

    Thanks for answering, that's what I thought too. The hyperreflexia has increased compared to last year, that has the neurologist worried as it doesn't match MG. At the ALS centre here in Europe, which is a well known and renowned centre, the protocol is to measure PCF and FVC of ALS patients...
  9. L

    Peak cough flow variation in ALS

    Hi guys, I posted a few times already here about my mother who has a possible diagnosis of ALS, but seronegative Myasthenia Gravis is also still being considered, but it cannot explain the hyperreflexia of her legs. So they think ALS and MG or maybe cervical radiculopathy. She has atypical...
  10. L

    Hi, how are you doing? How was your last EMG? I was reading ur post about possible Myasthenia...

    Hi, how are you doing? How was your last EMG? I was reading ur post about possible Myasthenia Gravis and I am curious to hear how you are doing.
  11. L

    Reversible breathing issues with IVIG in ALS and MG

    Laurie thanks so much for the link, I have read this article before indeed and concluded that it is possible but quite rare. I guess you can always be so unlucky. At this point everything seems possible sometimes! My mother started with shortness of breath in April 2016 when they thought she...
  12. L

    Reversible breathing issues with IVIG in ALS and MG

    Sorry btw, I know it's Laurie but it was autocorrected !
  13. L

    Reversible breathing issues with IVIG in ALS and MG

    Laura you are right, thank you. We have another EMG scheduled for the 5th of April, but I am trying to think along what else it could be, as the EMG will be dirty life before. In the meantime MG medications are continued. If she doesn't take Mestinon in the morning she cannot even wash her face...
  14. L

    Reversible breathing issues with IVIG in ALS and MG

    Thank you for your reply Vincent, sorry to hear IVIG didn’t work for you. You were very unlucky with the side effects! I mostly hear people complain about headaches and fever. I have often wondered if multifocal motor neuropathy could be an option. I re-read the EMG results from Mayo clinic...
  15. L

    Reversible breathing issues with IVIG in ALS and MG

    Dear PALS, I've had an earlier thread regarding my mother, who's diagnosis is still uncertain. Both Laurie and Karen were very helpful. A short intro: My mother is a very complex case and has shortness of breath, orthopnea, loss of strength in upper arms and some atrophy of the deltoid...
Back
Top