Newly Diagnosed Here

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Newly Diagnosed Here

Postby Guest » Fri Jan 25, 2013 2:54 pm

Just turned 30 in August, leg symptoms started early September 2012 and went away. On December 1, 2012 I was hit by a MS freight train. From the chest down, including hands (not arms) complete numbness. No tingling or anything else.

12/05/12 Brain MRI - Numerous Lesions
12/11/12 Neuro visit - Temp MS Diagnosis
12/26/12 Spine MRI - Multiple Lesions
01/04/13 Lumbar Puncture - met the 3 MS credentials for full MS diagnosis
01/21/13 Neuro prescribed Rebif and I declined

While building my son a playhouse back in April 2012, I had a weird quarter sized, perfectly round bald spot on my scalp, with a black dot in center. Ticks are normal in my area, Pennsylvania. PCP thought it was cyst, went to surgeon, no cyst. Nothing at all except clear liquid. Hair grew back within 2 weeks. Tested twice for Lyme, positive for 23 and 41 bands, but nothing showed in LP fluid. Interesting.......

Now following a diet and working on getting LDN. Have a different neuro apt in NY on Feb 1st.
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Re: Newly Diagnosed Here

Postby jimmylegs » Fri Jan 25, 2013 6:07 pm

welcome to TiMS jake :)
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Re: Newly Diagnosed Here

Postby NHE » Sat Jan 26, 2013 12:00 am

JakeB wrote:While building my son a playhouse back in April 2012, I had a weird quarter sized, perfectly round bald spot on my scalp, with a black dot in center. Ticks are normal in my area, Pennsylvania. PCP thought it was cyst, went to surgeon, no cyst. Nothing at all except clear liquid. Hair grew back within 2 weeks. Tested twice for Lyme, positive for 23 and 41 bands, but nothing showed in LP fluid.


Have you seen a lyme literate MD (LLMD)? If you have lyme disease, then suppressing your immune system with MS drugs may be the last thing you want to do.
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Re: Newly Diagnosed Here

Postby Guest » Sat Jan 26, 2013 7:27 am

I am trying to find one in my area. Even research that IGNex place in California. Another reason I am holding off on MS specific drugs. My PCP said I was "borderline"positive fo Lyme with the 2 of 5 bands for diagnosis, but they rather call it MS without further investigation.
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