A start

I wanted to start a blog months ago, but never could find the link. Maybe I had to wait a certain period to get access...who knows? Anyway, I was diagnosed with ALS in June 2014. At that time I had a slight toe drop but no need for orthotics or a cane. My voice sounded strange to me but most everyone else said I sounded fine. Maybe they were just being nice. My right hand was a bit weak, but nothing bothersome. Flash forward to today: my left foot is essentially dead to me. My toes drag whenever I walk and the tips of them are wearing off from the contact with the floor. I'm still able to type with my right ring finger but the rest of my hand is too weak to do anything. It's not uncommon for me to need Connie to button my shorts and zip me up. Surprisingly, my voice is still pretty good, unless I get tired, then even Connie can't understand me. I get fatigued very easily and need a walker to get around the house safely. Doesn't mean I use it consistently, but I need it. I have a shower chair so there's less chance of a fall in there...my balance is completely gone, so don't ask me to pick up anything from the floor. To add to the trials, we have a baby (Ariana) to care for. I think the adoption will be complete in December. And she has her own health issues, so Connie really has two invalids to care for. And of course, my hands are tired, so that's it for today. M


Atsugi's picture

Thanks for blogging, M. Sorry to see your voice and hands are affected so soon. Good luck with Ariana.

dralmiller's picture

The clinical picture you describe is seen in Lyme Disease.
You should be PROPERLY tested for Lyme Disease.
Please view this link for information.
Letters: Detecting Lyme Disease May Require Thorough Testing - The Rheumatologist.
Lyme Disease can produce a clinical picture identical to MS and ALS.
The incidence of MS and ALS is very high in areas where Lyme Disease is endemic.
Every patient with ALS must be properly tested for Lyme Disease.
Lyme Disease can be successfully treated with antibiotics.
Proper testing for Lyme Disease is very important.
The screening Elisa Test is unreliable.
The Western Blot is preferred.
Make sure the Western Blot Test includes Bands #31 & #34 as they are very specific for Lyme Disease.
Many Western Blot Tests omit Bands #31 & #34 and may give a false negative invalid result.

EriicS's picture

M - sounds very familiar. My wife was diagnosed in Dec of 2013. One of the first things we did was to get a set of braces that fit into her shoes and hold her feet up. Has helped a great deal, both with not dragging her feet and balance. She is now no longer walking but for a long time they made a big difference, in case you have not gone that route. I can forward you the maker if you need it. They are carbon fiber. Eric

jim1948's picture

I purchased Allard Blue Rocker AFO orthotics on e-bay and it stabilized my ankles and allowed me to walk for 1 year so far. Medicare will cover them if you get an rx from your primary care doctor, for an orthotist.

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