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Showing Visitor Messages 11 to 20 of 28
  1. twinmommie72
    06-28-2011 09:01 PM - permalink
    Hi there. How are you? I wanted to check in.
  2. NotALS!
    06-24-2011 10:52 PM - permalink
    Dr Harvey has just passed away so Dr Martz is supervising the clinic again. Its worth a try. Their success rate is about 20%, which is better than 0!
  3. campdiva
    06-16-2011 08:27 PM - permalink
    Hi NotALS....I was reading an older post you made back in Dec/Jan about going to Colorado to see the famous Dr. M. Can you give me more info on this Doctor and where he is located?

  4. NotALS!
    05-08-2011 10:10 PM - permalink
    Hi twinmommie, thanks for asking. My c.diff is better so I'm slowly starting back on azithromycin. Just 2 pills gave me diahrrea again but my energy level was noticeably higher. I'm glad I'm responding to it. I'm taking alot of herbals but they don't seem to be doing much. Its getting harder to walk, I feel like I'm losing muscle in the back of my thighs. How long have you had ALS?
  5. twinmommie72
    04-22-2011 09:38 AM - permalink
    Hi there. Wanted to check in and see how you are doing. Hugs
  6. NotALS!
    03-19-2011 04:57 PM - permalink
    I just started with an osteopath and he prescribed both s. boulardii and the yeast items you mentioned. Its a long road but I am alittle better.

    Why were you taking antibiotics? Did you have an ALS dx originally?
  7. awieleba
    03-17-2011 09:21 PM - permalink
    HI, I read that you have C Diff, I had that in 2008 for 4 months. If you have questions let me know, I dont have an als dx but I suffered with c diff for over 4 months and was in the hospital 2x for over a week each time. I had iv flagy and vancomyocin. It turned into psdeuomembranous colotitis. So, the main thing that finally worked for me was brewers yeast, and the name was flora stor. I wish you the best, my c diff was from antibiotics as well, if you take the antibiotics you have take flora stor and lactobacillus the whole time.
  8. 10steps
    02-27-2011 08:24 PM - permalink
    Our house had a homestead put on so it is protected. We have what is called a Revocable Trust(includes myself and my beneficiaries which I no longer claim my husband). Everything goes into the trust upon death. I am the executor. Even life insurance beneficiary is changed to the trust. Our kids are in their teens so I also prepared in the event I died before my husband and named a trusted family member executor and make decisions on their behalf or in their best interest and upon what age I feel they could handle the responsibility of money with no advisement. My husband is not named in the trust so he has no access if I die first, although unlikely, still a possibility, so we still have money in joint account that he can access to ahndle affairs and food, clothes, etc. until the Trust goes into effect. i now carry life insurance witht he trust named as benenficiary which would take care of all college needs- should I pass away, otherwise it's work as usual.
  9. NotALS!
    02-18-2011 10:22 PM - permalink
    thanks Karin. I am depressed when my ALs symptoms seem to be worsening but happy and upbeat when I feel I'm getting better. I still think I have lyme which caused the muscle atrophy. I hope to get back on the rocephin soon. My gut is better now.
  10. Karin Bolette
    02-14-2011 10:31 AM - permalink
    Karin Bolette
    Hi there- I know how very frustrating this whole process of getting a right diagnoses. I've gone from 2nd stage heart failure to ear problems, a possible stroke to ALS to MG to Upper GI back to ALS and now they say arthritis and osteoarthritis with possible ALS or MG on the back burned as they are unable to diagnose the progressive sypmtoms of Bulbar and arm and hand weakness. Don't give up yet sweetie. If you can get some treatment, I don't know what the prognose is for Lyme's disease is but attempting suicide just adds more to your difficulty. Then they label you depressed and for whatever reason decide all your symptoms are questioned. For some reason the medical profession just doesn't understand the frustration. Hang in- blessings Karin

About Me

  • About NotALS!
    What's your relationship with ALS/MND?
    I have been diagnosed with ALS.
    If diagnosed, when was the diagnosis?
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    was an artist
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    I can't believe I have ALS.


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  • Last Activity: 10-28-2016 08:53 PM
  • Join Date: 08-28-2010


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