lydia's Profile Picture
lydia is on a distinguished road

lydia lydia is offline

Senior Member

Visitor Messages

Showing Visitor Messages 1 to 10 of 160
  1. Jamieh
    10-15-2015 11:54 AM - permalink
    Jamieh
    Any disgnosis?
  2. Tiber2011
    06-26-2013 12:32 PM - permalink
    Tiber2011
    Hi - I read a lot of your posts. What are you up to these days?
  3. rose
    11-01-2012 08:32 PM - permalink
    rose
    Its all good. I keep meaning to email you more too, I completely understand. Later.
  4. rose
    10-02-2012 11:57 AM - permalink
    rose
    Lydia,

    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 07:30 PM - permalink
    Macalaster
    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.

    macalaster
  6. Macalaster
    06-22-2012 07:15 PM - permalink
    Macalaster
    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 06:16 PM - permalink
    rose
    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 09:10 AM - permalink
    rose
    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 10:27 PM - permalink
    rose
    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 03:45 PM - permalink
    rose
    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?
    00/0000
    City
    buffalo
    State or Province
    ny
    Country
    US
    Occupation
    assistant professor
    Interests
    gardening, reading
  • Signature
    +++++++++++++++++++

Statistics

Total Posts
Albums
Visitor Messages
Total Thanks
General Information
  • Last Activity: 05-15-2014 03:24 PM
  • Join Date: 01-25-2007

Friends

Showing Friends 1 to 10 of 14

All times are GMT -5. The time now is 08:02 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016