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  1. R

    Length of time between symptom onset and VA diagnosis

    I would recommend seeing your PCP again if you feel your symptoms have changed or gotten worse. If your PCP feels another visit to a neurologist is necessary, they can refer you and probably get you seen sooner. Or they can refer you to physical therapy or other specialists they deem...
  2. R

    Length of time between symptom onset and VA diagnosis

    My husband got his care and diagnosis at the VA. What are your symptoms? What did they say at your initial appointment? Do they suspect MND? What tests have you had done?
  3. R

    CALS Roll Call Continued

    Tomswife, my husband was the same with just writing instructions. It always made me so sad. He had FTD so I know put wasn't his fault, but it still sucked. One time I asked him if he still loved me, and for 2 days in a row he wrote "I love you" on his board to me. It made me so happy. I'm glad I...
  4. R

    RIG vs. PEG

    I think , the key is that you want to have the tube placed in Interventional Radiology. My husband was an interventional radiologist and placed so many feeding tubes. When he had his tube placed, they didn't do any imaging before hand, but they were able to make decisions on the fly to get the...
  5. R

    What should I request at Clinic tomorrow?

    That sounds so awful! Is there a different doctor you could switch to? I'm guessing she is embarrassed that she missed the diagnosis but that doesn't excuse her behavior! You deserve to be listened to!!!
  6. R

    What should I request at Clinic tomorrow?

    My husband had FTD. While it never hurts to get tested, you certainly don't sound like you have FTD to me! I hope when your FTD tests come back as normal, you can show them to the doctor and tell him to start listening to you!
  7. R

    CALS Roll Call Continued

    Mary, I'm glad the birthday was good. Try not to think too much about what you will do "after". Just try to be there for the now. Yes, I know, that is impossible to do! So no matter what, always remember that you are doing your best and you are doing amazing.
  8. R

    MupstateNY's thread

    I find there are two kinds of people who come to this forum. Those that are sure they have ALS, and almost never do. And those that are desperate to have us tell them they don't have ALS. Those are the ones who do end up having ALS. I was in the second group. I so desperately wanted people here...
  9. R

    A lovely Christmas

    V, I'm so glad you had a good Christmas with family. This first year is so hard.
  10. R

    I miss my husband

    I've been struggling lately. I miss my husband so much. I want to remember him as he was before the FTD, and then ALS, took him. Every year I made a calendar with pictures from he and I together. Even last year, I was able to make a calendar with good pictures of the two of us. But I knew this...
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