Recent content by One2022

  1. O

    Relyvrio improvements anyone?

    Thanks Nikki for your reply! I'm glad to hear you had some improvements with the meds. I'm not familiar with Tudca but now that I read about it seems to shows some slow down. I guess anything that can help is great! So far my choices are Albrioza or Edavarone. I will ask about Tudca to see if...
  2. O

    Relyvrio improvements anyone?

    Hi all, I know it might be too early to ask, but have any of you slow/slower progressors see any improvements using Albrioza or Edavarone yet? I was suggested to start one for my ALS-like MND. I will be meeting with ALS clinic soon but wanted to hear some firsthand experiences also. thanks!
  3. O

    ECG

    Hi, Quick question. Did any of you had issues completing ECG because of the tense muscles where machine could not get a reading? Thank you!
  4. O

    AR ALS/MND

    Thank you guys. I am working with full force with my whole team that has my neurologist at the head. It's a non stop examination and reports. My neuro was recommended by my endo because she was rare one who knew and had Allgrove patient. Just in past two months I 16 different tests and follow up...
  5. O

    AR ALS/MND

    Also, thank you for the link! Good resource there. I don't know what sequences will be test but these categories are helpful. I was looking at this site for AR modes of inheritance. I see that few are showing on your link. <MDA site link removed since includes donation request>
  6. O

    AR ALS/MND

    Hi Nikki, what I meant by AR is autosomal recessive types. I read types 1,2,3,5,12 and 16 are AR. But majority of ALS genes as I read are autosomal dominant. At 16 my needle EMG was normal but NCS showed neurophatic disorder with demyelinatiative damage along median nerve. Had hyperreflexia...
  7. O

    AR ALS/MND

    My 8 months EMG repeat is in 2 months to evaluate my ALS/MND. Recently I've completed videofluroscopy that showed dysphagia severity 3 with tongue fasciculations not previously seen 6 months ago by neuro. My recent chest CT showed mild right lower lobe bronchiectasis due to chronic aspiration...
  8. O

    Legs weakness

    To add, some of my joints pain in arms and legs could also be from my severe osteoporosis (-3 to -3.9 Z-scores). Also, do not want mods to feel being criticized much as I do appreciate their input. I feel we all here are living with MND or have someone close to us who has it. I find with myself...
  9. O

    Legs weakness

    Hi Meyermihi , My situation is a bit more complex as Laurie said because of my syndrome. My wax and wane symptoms could be from my autonomic failure, neuropathy or Addison's disease. MND has been established by my neurologist with ALS standing as probable diagnosis. That confirmation will be...
  10. O

    Legs weakness

    Thank you Kim. It does seem that ALS varies in progression and symptoms. I guess that's why time can tell best as later everything falls into place if ALS is really present. The language used is similar to what I was told and what I got in my reports: distal denervation, nerve degeneration...
  11. O

    Legs weakness

    I am sorry to hear that you have progressed. For now I can still do everything but not with same strength as like 2-3 years ago. It really seems that my progression is very slow which makes my diagnosis tricky. For sure it sounds that change in diagnosis to definit is beneficial for those extra...
  12. O

    Legs weakness

    Thank you for information! At all conversation with my neuro I was told I have slow progressing ALS. This includes my last week GP visit who said objective measures so far confirmed definite MND with probable ALS. I was told that confirmation and prognosis will be made in October depending on...
  13. O

    Legs weakness

    Nikki, I guess there's no eventuality percentage associated with possible and probable diagnosis?
  14. O

    Legs weakness

    Thank you Statius. I keep hearing that benefits and insurance really differ between diagnosis. Luckily I am still ambulatory but do have increased weakness in legs and fingers/hand and shortness of breath. I was told to check my insurance as well as join ALS society and get administration part...
  15. O

    Legs weakness

    Thank you for clarifying Igelb. I wasn't sure if probable was part of diagnosis process or actual category. Having it as category for sure is much better and gives hope. What other MND do you think could be? Or could UMN and LMN signs/symptoms be not related to any MND but be from some totally...
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