Recent content by RobbiJ

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    Newly Diagnosed

    I have just received the definite ALS diagnosis, previously was just MND/probable ALS. At least I know now. We have a home based business so even tho I work in it, my husband is primary on our taxes and we just file as a sole propriortiship. So no SS. A few years ago I figured out how to file so...
  2. R

    Thank you, most days I still hope maybe they're wrong. Did you go to Dallas to get diagnosed...

    Thank you, most days I still hope maybe they're wrong. Did you go to Dallas to get diagnosed? I'm thinking about getting a second opinion from a practice there. I hope things are not too bad for you. Robin
  3. R

    NEWLY DIAGNOSED with Bulbar Palsey

    I too have been recently diagnosed. 12years ago I had an abnormal mammometry. It showed significant weakness in my upper third esophagus, I had the test because of difficulty swallowing liquids. This has very, very slowly gotten worse and now I also have problems with dry foods such as crackers...
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    Process of being diagnosed

    Saw the neuro yesterday. The Pompe and SMA were both negative. He said he will do an antibody titer for MMN although that is unlikely as I have a few UMN signs...jaw jerk occ., spasticity in legs...also no conduction block. He thinks more likely slowly progressive ALS or PMA. The lab is coming...
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    Newly Diagnosed

    The medical director that is...not the director director.
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    Newly Diagnosed

    In Mansfield. He is the director of the local Fort Worth MDA chapter. I hope it is not too. But I felt very stupid after the EMG when he said MND and I didn't even ask any questions because I didn't have any idea what that was. I asked if Pompe was ruled out and he said no, it looked similar on...
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    Newly Diagnosed

    My EMG showed denervation in leg, arm and cranial muscles. My mammometry showed upper third of my esophagus with severe weakness (upper third is skeletal muscle) and my muscle biopsy showed loss of nerves. So I guess if these last 2 tests come back negative I fit the diagnosis for definite ALS.
  8. R

    Newly Diagnosed

    Yes, my nerve conduction studies were normal...so no MMN. Things do seem to be moving faster.
  9. R

    Process of being diagnosed

    Hi, I have just been diagnosed as probable MND. Am waiting for the results of a Pompe test that was done before my last EMG...and a test for type 3 SMA. Once those results are in I guess my diagnosis will change to definite as my EMG showed LMN signs in my R leg, arm, cranial nerves and...
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    Newly Diagnosed

    I guess I am newly diagnosed as well. I have had swallowing and upper esophageal issues for 15 years. Then about 4 years ago I noticed I couldn't easily climb stairs, get up from chairs, etc. 2-3 years ago I started to seek out doctors to find out what this was. This year i have started having...
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