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lydia lydia is offline

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Visitor Messages

Showing Visitor Messages 1 to 10 of 160
  1. Jamieh
    10-15-2015 12:54 PM - permalink
    Any disgnosis?
  2. Tiber2011
    06-26-2013 01:32 PM - permalink
    Hi - I read a lot of your posts. What are you up to these days?
  3. rose
    11-01-2012 09:32 PM - permalink
    Its all good. I keep meaning to email you more too, I completely understand. Later.
  4. rose
    10-02-2012 12:57 PM - permalink

    I'll email you soon. Take a look at my profile page, I added a bit of an update there, and will write you more soon.
  5. Macalaster
    06-22-2012 08:30 PM - permalink
    Oops sorry Lyme by a Lyme literate md and finally Parkinson's by a very experienced neurologist due to mild cogwheel rigidity on exam. pet scan normal. this workup has included one lesion on MRI, oligoclonal bands in Csf, normal Emg ( 1 yr ago), SPECT scan showing diffuse hypoperfusion.
    I have lost 18 pounds in 2 years all muscle. family history of Parkinson's in father and ALS in two maternal cousins. All blood work negative for auto immune or inflammatory disease. I am taking Mirapex and azilect but not sure they are doing much. I didn't have any response to sinemet, but could not tolerate increasing the dose due to nausea.
    I was wondering if you ever received a definitive diagnosis and/or how you are doing whether or not your symptoms stabilized or improved.

    I hope I am not being rude by asking you these questions. I don't want to post in the general forum because my story is so confusing.

    thank you for reading my message.

  6. Macalaster
    06-22-2012 08:15 PM - permalink
    Hello. I have been reading the forum for a long time. like so many others I came searching for answers for what ails me. My story sounds very similar to yours. I have been diagnosed with menopause by my internist, Bfs by a general neurologist, MS by a famous MS specialist, possible (sero-indeterminate)
  7. rose
    06-09-2012 07:16 PM - permalink
    Definitely sharpies :) I got your email, will respond sooner or later. Just logged onto my real computer, had been on my iPhone all day today and yesterday, too much effort to type on it. If it only didn't like to finish words for me, and finish them WRONG! My phone's predictive text doesn't so that well with predicting.
  8. rose
    06-08-2012 10:10 AM - permalink
    I don't know. I'm making an appointment today. I think the orthopedic doc will either take more x-rays, or order MRI to determine if surgery is needed. Even though you can't write on it, you can always give input as to color. Should I go for a bright color, or stick with something bland? (presuming I get a new cast)
  9. rose
    05-14-2012 11:27 PM - permalink
    Sadly, I was getting ready to email you about Glen. I see you are online and have found out that he's passed. Its the announcement I've dreaded but expected for so long.

    I hope you're good. I do have some appointments, back at the main Hopkins facility. Will let you know after...
  10. rose
    05-05-2012 04:45 PM - permalink
    Hey yourself :) I've been taking time away from the virtual world. Email me though. Will talk soon

About Me

  • About lydia
    What's your relationship with ALS/MND?
    I hope I am NOT in the process of being diagnosed
    If diagnosed, when was the diagnosis?
    State or Province
    assistant professor
    gardening, reading
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  • Last Activity: 05-15-2014 04:24 PM
  • Join Date: 01-25-2007


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