Lovely Laura
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  • The Lyme disease diagnosis is interesting - Dr. Klinghart a well-respected Bellevue physician and researcher, says that ALL chronically ill patients he sees have Lyme involvement. I'm taking anti-microbial drops for the Lyme and several supplements to help my poor digestion/absorption and low amino acids. Since April I've been on a long, slow slide that has gotten steeper in the last couple of months. I'm having enough trouble staying balanced that i use a walker outside of the house. My right arm is a lot weaker than my left, and my hands are losing strength too. My nails are lovely though! Gotta look on the bright side! Hope all is well with you, Lovely Laura!

    Sorry the post is kind of backward- I had to cut it up because they have a character limit....

    That GP did an EMG and because he had no experience with other neurological disorders, sent me to a Dr. who specializes i ALS at the GF Strong Rehab clinic in Vancouver. The specialist was surprised that I presented so symmetrically in terms of muscle weakness - especially ankles at that point, but also shoulders, arms, lower and upper legs. She had me do 3 IVIGs over 3 months (no improvement or stabilization) and then did a muscle biopsy. The biopsy showed no swelling in the muscle tissue - and that tipped it. April 7, 2010 she diagnosed me with ALS and said that I'd probably be in a wheelchair in a year's time.
    Hi Laura-

    Sorry I took so long to reply, but I didn't see your note until today! Getting to the know the structure of the forum has been a bit of a trick!

    To answer your questions, my symptoms first became noticeable in the late summer of 2009. I would take my dog out for a walk and had no spring in my step! Jogging just didn't feel the same... then a few months later when nailing down base-board molding in my office (hands and knees) I noticed I couldn't hold my head up. I also was having a little trouble swallowing so went to my GP. He ordered a barium swallow which came back normal, and said to get more exercise! I knew the issue with my neck was not muscular - when you stress healthy muscles they are sore the next day, but my neck wasn't sore at all. I changed GPs and the next one sent me to a neurologist who treated me for Myasthenia Gravis, but the Mestonine had no effect.
    No I never had urinary incontinence. That is usually something that goes along with MS. I started with neuropathy and sensory issues. Now I have speech problems and weakness where the multiplex was found. I never had much in the way of classic Lymes symptoms as people describe them. My disease was neuro from the start. My progression has gone from twitching and sensory discomfort to speech problems and slight weakness in affected areas in a year. Very slow and most days I feel I am getting better. Hope this helps. I was diagnosed with 6 different tests plus a tap over 3 different doctors and all had same diagnosis..tertiary lymes disease with mononeuritis multiplex as secondary. I also have brisk reflexes.
    hi . . Thank you for your kind words and support. -Its so welcome .. And appreciated cos it sounds like you have your own troubles. I hope for you to get decent healthcare that is not d.i.y ! Thanks again . . God bless . . Alex
    The cause of my peripheral neuropathy was not definitively found but it was most likely autoimmune in nature. Thanks for asking and please take care.
    Laura, sleeping is so important.Get some kind of sedative from your Doc.TylenolPM works, too.But you need your sleep, darlin'. The darkness is always before the dawn.
    Hello Laura. I was diagnosed with a peripheral neuropathy and have since nearly made a full recovery. The EMG will last anywhere from 30 minutes to about 2 hours. It starts with a nerve conduction study, which will entail shocking your nerves (it is a little uncomfortable but not too bad). Then the EMG portion will entail recording electrical activity in your muscles by inserting fine needles into them (again, a little uncomfortable but not too bad). I wish you luck. Take care.
    The EMG/ncs will give you more insight.Just curious, after the "seizure", did you sleep a lot? Have you had any traumatic injuries, exposure to toxins, or recent vaccinations?
    Hi Laura,
    My EMG and NCV studies apparently showed that some progression in the symptoms in my left arm (the original location of problems), and one "abnormal" reading in the dorsal interosseous muscule of my right hand (the muscle between thumb and forefinger). Other muscles tested (in back and legs) were normal. So I'm still without a diagnoses, just the doctor's opinion that he "suspect's ALS." (I haven't actually heard from him. The EMG was done by another doctor at the U of MN. My next visit with my doc at the ALS clinic is in September.)
    Best to you. Hope you get a good answer soon.
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