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  1. NotALS!

    Misdiagnosed 4 times

    Hi. I want to share my ALS journey with others to let them know that it is possible to be misdiagnosed with ALS. Since my story spans 8 years, I will try to give a brief synopsis of what cured (yes, I said CURED) me. It started in 2009 when I lost strength in my left hand. It quickly spread to...
  2. NotALS!

    Five years and going strong

    I've been diagnosed with ALS 4 times and seen 6 neurologists. I've had 7 EMGs, 3 MRIs, 2 CAT scans, numerous xrays, hundreds of blood tests and taken tons of antibiotics prescribed by 3 of the best known lyme specialists in the country. I was still deteriorating, shaking and barely breathing at...
  3. NotALS!

    My family loves me

    I offered to kill myself by taking sleeping pills yesterday. My husband and son were horrified. It made me realize that even though my ALS is more work for them that they want me around anyway. It made me feel so loved and blessed. :o
  4. NotALS!

    I'm back

    Everytime one doctor says I don't have ALS, another one says I do. Its been back and forth 7 times. Noone can figure this out! I just went to MassGeneral and the head of the EMG lab, Dr David, said I didn't have ALS because I improve on antibiotics and IVIG but then he did an EMG and said I DID...
  5. NotALS!

    Diagnosis changed from ALS to MG

    Three years ago, I was diagnosed with ALS, early onset, at Yale New Haven Hospital. I was 49. The neurologist immediately said "don't try antibiotics, they don't work and they just make you sick". He gave me a prescription for Rilutek and sent me home to die. My husband and I immediately began...
  6. NotALS!

    How did you send your child to college?

    I am 53 with ALS, my husband is 55 and ready to retire. Our income is about 60k. Our son is 17 and wants to start college in a year. Any ideas on how we can help him financially? We have about 12k in a CT state college savings program. Are there any ALS scholarships available?
  7. NotALS!

    Delayed diagnosis

    How long did it take for you to be diagnosed with ALS? I've been sick for 4 years, diagnosed with possible ALS early onset 3 years ago. I've had 4 neuros examine me and 2 say I have it and 2 say I don't. I've been taking antibiotics so maybe that has slowed the progression. I'm getting...
  8. NotALS!

    strange breathing pattern

    My breathing has gotten difficult at night so now I have a cpap with oxygen. I get winded easily but I seem to be ok during the day. I'm getting over a cold and couldn't use the cpap because of congestion. I thought I was a goner but my breathing suddenly got easier during the worst nights! As...
  9. NotALS!

    best ALS research center

    I have been bounced around for the past 5 years by numerous neuros who can't agree on my ALS diagnosis. Seems I have symptoms of many diseases. I was thinking of going to a large ALS center in the NE, like UMass or Columbia. I would like a place that is working on stem cell or molecular ALS...
  10. NotALS!

    back to the als diagnosed, again!

    Ok, this is really getting ridiculous. I've had lyme symptoms for 10 years but never tested positive for anything. In 2009, my shoulder became weak and atrophied. The first neuro didn't give me any explantion but asked me back in a year. A year later, the atrophy had spread to my other shoulder...
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