Recent content by morleyde

  1. M

    TUDCA in Europe, Netherlands

    I bought Tudca that is made in the UK. I bought in the US from Amazon, but it says "made in UK". The company isKoNefancy, and it is called Advanced TUDCA. It has some other ingredients in it like Milk Thistle. Just started it so can't say anything good or bad.
  2. M

    PLS and Riluzole

    Jan, Is the swallowing issues caused by weakness or spasticity? If it is spasticity they can try Botox, or muscle relaxers. I have tried Botox in my legs and back and it helped. I don't have swallowing problems.
  3. M

    Thought I had something else...I do, but also still have MND (just venting)

    Tippi, Why was UCSF very confident it was ALS, and Standford thinks it may progress to ALS? Do you have any LMN symptoms? If it has been 3-4 years since symptoms, with a clean EMG, and no LMN, they usually diagnose PLS. I realize it is a judgement call with various opinions on when they can...
  4. M

    tumeric or curcumin

    This is why I started talking L-Lysine. Supplementing diet with amino acid successfully staves off signs of ALS in pre-clinical study Do you think I am wasting my money? Does L-Serine give the the same, or more benefits than L-Lysine? Thanks, Joe
  5. M

    tumeric or curcumin

    I tried it for 30 days during Dr. Bedlack's trial. I had purchased a large supply if Curcumin from a big box store and have been taking it with a pepper pill to increase its absorption. I will probably switch to Dr Bedlacks recommendation when my other supply is gone. I have not noticed any...
  6. M

    tumeric or curcumin

    I thought it was L-Lysine, not L-Serine?
  7. M

    PLS and Riluzole

    I have PLS and have not been prescribed Riluzole. I have been to Mayo and currently go to the ALS Clinic at the VA in STL, and none have mentioned that I should take it. I vaguely remember asking ( I think it was at Mayo) if any of the ALS drugs would help me, and they said no. Just my experience.
  8. M

    PLS or slow moving ALS?

    There is an SPF/PLS group that you should look into. They are on Facebook and have a website. https://sp-foundation.org/understanding-pls-hsp/pls.html They have been a big help to me as I have PLS.
  9. M

    Strange family history

    Emanol, I have PLS and I have a cousin that developed Parkinson in his early 40's. I asked my Dr at Mayo if there was any connection and he said no. I am very rigid, especially in my legs. I jokingly say I walk like Frankenstein. My spasticity Dr showed me the difference between how a...
  10. M

    tumeric or curcumin

    What brand of TUDCA? I see someone stated what dr. Bedlack recommends for Curcumin, but what about TUDCA? I tried one brand and found out it was just powder. I guess that is why it was half the price of others. Now using Double Wood brand (is it OK to mention the brand?), and it has a lot...
  11. M

    tumeric or curcumin

    Kellysal, What are the "several others" that Dr. Bedlack recommends?
  12. M

    Symptoms of PLS

    Seattle PLS, "Complete loss" dos not sound like PLS. Spasticity, slowness of movement, and even weakness is typical of PLS, but not complete loss. I agree with previous posters that an EMG would help determine what is going on. I have PLS, but am not a medical professional.
  13. M

    Just finished second opinion appointment

    Experiences like I am going to tell, have happened to me at key moments in my PLS life. I pulled into a handicap parking space at Walmart recently. As I was hanging my handicap tag onto my mirror, I felt a little frustrated and depressed that I was going to have to get my rollator out of the...
  14. M

    Good news!

    Good news. A clean EMG is comforting.
  15. M

    Frustrated with referral

    Tippi, The EMG should help with the diagnosis. Do you have spasticity, hyperreflexia, clonus, or babinski sign? They usually check for them because they are UMN signs that PLS people tend to have, without the atrophy. I am not a medical professional, just what I have learned.
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