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    • #21259
      Carol
      Participant

      Interesting reading of ALS today article concerning eye exams to help with diagnosing neurodegenerative diseases. I have had extensive retinal inflammation starting back since 2019. Panuveitis. Was treated with strong steroid eye drops for many months. Now all these limb weaknesses and spasticity come along etc etc. Still a probably ALS diagnosis. Well let’s just see how you evolve . See you in 6 months. Ever day I stiffen more and in more muscles. Getting hard to walk. Steps no can do anymore. Side step down them . Slowly. Very frustrated and depressed. Not sure what to do next. Just want answers and diagnosis.

    • #21270
      Bill
      Participant

      Carol

      I feel your frustration with the “see you in 6 months”. I had same but pushed for referral to a teaching hospital with a research and ALS clinic. Took about 7 months to get appt. My brother at same time as was also looking for diagnosis. We had very different symptoms and different MNDs. After a crisis, he went to a ER at a University hospital (different state than I) and got into a real specialist earlier.  Good luck.

      • #21277
        Carol
        Participant

        Thank you Bill again for your responses. Trying to get this posting thing down . Not sure if I’m doing it right. Everything and I mean everything else has been ruled out. Symptoms progress every day. Pain is a big problem for me  legs so weak etc etc. Appt with different neuromuscular Dr next week at  a major University hospital.  Have you been officially diagnosed now?  Best wishes to you and your brother.  This forum is so supportive to one another. Brings comfort.

    • #21278
      Bill
      Participant

      Carol, yes I’ve been diagnosed with ALS for 4 years now. My brother was diagnosed with MSA (multiple systems atrophy) and died from it about 2 years ago. He went quick unfortunately.

    • #21279
      Carol
      Participant

      So very sorry for your loss Bill.  I hope you are staying stable with your ALS.  I lost an aunt and cousin to ALS. Hopefully I will have official diagnosis next week and see where I go from there. So much info on possible new drugs for ALS that may help some people. Thank you for your time.  Stay strong and safe out there.

    • #21280
      Kathy stitz
      Participant

      Best wishes to you Carol. I hope you get answers about what is causing your symptoms and that you can get treatment and feel better soon.

    • #21281
      Carol
      Participant
      • Thank you Kathy! Best wishes to you.
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