NIH may be more open minded than I once believed...

[Guest guest]

Hi everyone,

I was diagnsoed with RRMS in 2009. Not buying into the diagnosis led me to see

many different practioners, all of which gave me the same diagnosis. In 2010

after undergoing a new procedure for MS (CCSVI), I discovered I didn't have the

condition. This led to yet further digging into my " diagnosis " . I signed up for

a clinical trial at NIH. After several months, they gave the standard " you have

MS " diagnosis. I started the injections despite the fact that I still wasn't

convinced.

Several months later my older sister was diagnosed with chonic Lyme. That was my

" ah-ha " momement. I went to an infectious disease doc who diagnosed me with Lyme

based on clinal symptoms (I didn't test positive until I had the test through

Igenex done).

Recently, I decided to contact NIH to update them on my case. Instead of

completely dismissing it (which I fully anticipated), they asked that I fax my

new findings to them. I'm also getting ready to schedule my yearly follow-up,

though I don't revel in having more gadium pumped into my body for the MRI's!

This may mot go anywhere, but I still thought it was worthy of posting. I

haven't sent them anything yet as I'm trying to make sure to solidify my case as

much as possible prior to sending anything to them. this is most likely a

one-shot deal. Keep your fingers crossed for me!!