Search results

  1. E

    Mills syndrome

    Hello, Some of you might remember my father´s case: early diagnosis of Parkinsons revoked, he was on the ALS / PLS limbo for a long time. Afer a second opinion now confirmed by our primary neurologist, it appears my father has a very strange variant of Motor Neuron Disease called Mills...
  2. E


    Hello! Back in this forum after a few months! My dad has been steady: UMN signs progressing and no LMN signs as of yet. I am writing to you to ask for advice regarding the management of Pseudo-Bulbar Affect. My dad´s outbursts of laughing and crying have been getting worse and it is starting...
  3. E

    Predictive model based on ALSFRS-R score?

    Hello, Does anyone know a good model of disease progression based on ALSFRS-R score? My father was told his score was 38/48, after 2.5/3 years since symptom onset. Could anyone point me to a good resource where rates of progression are plotted?
  4. E

    Breathing regular checks

    Hey everyone! Today my father had a breathing exam and, as it has been the case since he is testes, the results were perfect. In the past two years and a half since first measured, there has been no observable decline as measured by any indication of respiratory function. Given these results...
  5. E

    On a PLS rating-scale and clinical trials

    Here is an interesting video:
  6. E

    Genetic testing

    Hello, We are wondering whether to do genetic testing... There have been no more known cases of ALS in our family, apart from my recently diagnosed father. However, a cousin of my dad had MSA and another cousin is now being seen by neurologists with suspected Parkinson's disease. On the other...
  7. E

    Is Lyme a scam?

    Hello everyone, We live in a zone where cases of Lyme are frequent. Recently, some people of my town diagnosed with MS / Parkinson's were treated with antibiotics for Lyme and improved. One of them suggested my father see a physician with expertise on infectious diseases. I was extremely...
  8. E

    Not a story of hope but a hopeful poem

    Not a story of hope but a poem that I find strangely hopeful, all the more when the poem is about 5 men who are shot to their deaths. Also a poem that vindicates beauty even, especially when we are confronting death: 1. They take them out in the morning to the stone courtyard and put them...
  9. E


    Hello, My father is considering applying for the Arimoclomol Phase III study in Madrid. Since we are new to this, I had some questions: 1) How promising has Arimoclomol been? Browsing, I was surprised to find that an earlier trial was done 10 years ago (!). Is that timing normal? Why so long...
  10. E

    Vertigoo / Dizziness

    Hello everyone, Lately, my father has been having short episodes of dizziness and vertigo. He literally says that his head "goes away." Today he was shaving, standing alone, in front of the mirror, and almost fell because he got dizzy. The weird thing is that he can walk for a mile with a cane...