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  • Diagnosed w/ MS...have unusual symptoms...heard Tom Grier...desperate

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    Old 09-20-2011, 07:11 PM   #1
    abaftrise
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    Diagnosed w/ MS...have unusual symptoms...heard Tom Grier...desperate

    Hi,

    Please help....I need some opinions desperately. Thank you in advance to any input you can provide.

    I am 29 and have been living in slowly detiorating agony for the past couple of years... desperate for a solution.

    I was diagnosed w/ MS a year and a 18 months ago. My presenting symptom was optic neuritis in one eye, and months later, in the other. I have a few lesions on my brain, which led the doctors to believe this was MS. I have had tingling/numbness in my limbs but nothing severe. Prior to the diagnosis, they did lab work on everything and Lyme showed up negative.

    Despite MS treatment, after 18 months, my cognition has slowly deteriorated into constant fogginess (like taking cold medecine) and my fatigue is unbearable. I sleep 7-9 hours a day, take narcolepsy drugs (Provigil), and still feel tired. I have serious issues waking in the morning. 3 months ago, a constant twitch in my eye (appearing every 10 to 30 minutes), appeared...which numerous MS specialists can't explain. They thought this all may have to do w/ new MS lesions. Additionally, my lymph nodes in my armpits have been swollen to some degree for the past few months and out of no where a itchy, dry rash appeared in between two of my fingers, and has remained for over a month.

    While I currently reside in New York City, I was raised in a woodsy part of New Hampshire, and visit often. My mother heard Tom Grier speak on Lyme, and encouraged me to listen, when she heard his point on widespread false-negatives. If you were me...would you be concerned that the perhaps I have a mis-diagnosis of MS? Pumped full of MS meds...very confused...scared.

    -Adam

     
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    Old 09-22-2011, 05:44 AM   #2
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    Re: Diagnosed w/ MS...have unusual symptoms...heard Tom Grier...desperate

    I was told of a man the other day that at the age of 27, worked hard, married and kids. he started getting sick...as the years went on he was diagnoised with M.S.

    His temper would flare and he would beat on his wife and kids. Of course the family feel apart.

    He is now in his 60's...in a wheel chair has to have someone take care of him. And was diagnoised finally with Lyme.

    There are many reasons for M.S. Many bacterias and viruses that can cause M.S. One just needs to find out what they have.
    I have been seeing some docs treating M.S. with antibiotics and having great results. When I over do or get stressed I have M.S. like muscles. My doc totally understands what I mean by that.

    Sounds like you are on the right track.

    Jodie

    Last edited by J0J0; 09-22-2011 at 05:50 AM.

     
    Old 09-25-2011, 11:17 AM   #3
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    Re: Diagnosed w/ MS...have unusual symptoms...heard Tom Grier...desperate

    I was also diagnosed with ms 5 years ago because of brain mri/lessions, 1 eye and only 1 band in spinal fluid. Well I went on IV antibotic for lyme, 4 wks, with no test positive for lyme and have been pretty well until a recent tick bit.

    Now i have to start the process all over again as i have neuro systoms again, bells palsy, fog and tingling/numbing. This time i did test positive for lyme.

    I never went on the ms medication, and just dealt with the lyme meds. My systoms did abate completely in these years. Hope this is helpful to u.

     
    Old 09-29-2011, 05:03 PM   #4
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    Re: Diagnosed w/ MS...have unusual symptoms...heard Tom Grier...desperate

    Hello fellow NY'er.

    Yes, I have read countless statements in regards to MS patients finally being properly diagnosed with Lyme after some time. Same true with ALS and many of the other diseases that afflict us humans. The body is a vast multi-celled organism with many interwoven and feedback mechanisms. Disturb any one of it's intracasy and you will get a symptom. The Spirochete can enter any organ and cause any damage. I have seen symptomps from CFS, pinched nerve, Bell's Palsy, to full out Lyme symptoms as the initial indicators.

    I advise for you to read "Cure Unknown" by Pamela Weintraub. This journalist has done hundreds of hours of research on the subject, since her whole family has been affected by Lyme.

    Incidentally, I have personally spoken to Tom Grier and the author of the aforementioned book has consulted with him as well and writes about it in the book.

    I understand how difficult it is with all that Lymies are put up against- from health issues, to insurance battles, joining forces with the proper doctor, and the family misunderstandings. If you need any help or someone to talk to I am here.

    Last edited by moderator2; 09-29-2011 at 06:01 PM.

     
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    Old 09-29-2011, 08:32 PM   #5
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    Re: Diagnosed w/ MS...have unusual symptoms...heard Tom Grier...desperate

    talliris:
    Just curious...what part of your body to have the tingling and numbness? laLa

     
    Old 10-02-2011, 03:13 PM   #6
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    Re: Diagnosed w/ MS...have unusual symptoms...heard Tom Grier...desperate

    My arms And hands sometimes

     
    Old 10-19-2011, 06:09 PM   #7
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    Re: Diagnosed w/ MS...have unusual symptoms...heard Tom Grier...desperate

    Hi. This was exactly the type of post i was looking for. I am also recently dx with possible MS and I also live in NYC -- but outside of the city in the suburbs and we now have several herds of deer and i have seen them while walking my dogs. My dogs have had many ticks that we have pulled off. I know lyme ticks are much smaller.
    Anyway, i have questioned this possible ms dx all along. Maybe i'm in denial?? But my story sounds eerily similar. I was dx after being hospitalized for optic neuritis this past May. I never had any sign or symptom of ms before that and havent had anything since either. Two lymes tests have come back negative.
    So yes, they have started me on this crazy medication that my insurance pays $3k/mo for.
    I still wonder all the time...
    Good luck to you.

     
    Old 10-19-2011, 08:36 PM   #8
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    Re: Diagnosed w/ MS...have unusual symptoms...heard Tom Grier...desperate

    King:
    Are you saying that you have no other symptoms? You are know fine - symptom free. because if so, i would not think you have either ms or lyme. What were your symptoms of optic neuritis. LaLa

     
    Old 10-20-2011, 03:51 AM   #9
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    Re: Diagnosed w/ MS...have unusual symptoms...heard Tom Grier...desperate

    Hi LaLa. The ON was discovered by a primary eye dr that I was sent to by the dr in my medical office at work. My vision in my left eye was blurred and very gray, loss of color vision. The primary eye dr was not an MD so he couldn't dx the ON and he sent me to a neuro. The neuro also thought it was ON and sent me to a retina spec to get pics before he had me admitted into the hosp for ivsm for 3 days. This all happened in 1 day. While there I had an mri which showed 3 lesions. Now I just learned there is possibly a 4th but its so small they need a better pic to confirm its not a blood vessel. I just had am mri of my spine and it was clear.
    So the possible ms dx is based on the ON and the lesions seen on the mri. But to answer ur question, no I have never had any sign or symptom of ms in the past (even after thinking back and really trying to remember anything). And nothing since. My vision has improved at least 95% and I am told it can continue to improve up to a year.
    Thank you!

     
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