new member

[Guest guest]

---------- Forwarded message ----------

Date: Sun, Jun 10, 2012 at 5:56 PM

Subject: Re: Yahoo! Groups: Welcome to mscured. Visit today!

To: mscured Moderator <mscured-owner >

Good Evening,

Thank you for your response. I am a 44 y/o female diagnosed with RRMS in

2009 after a second episode of diplopia. After the standard tests, the docs

diagnosed me with a " mild form of MS " . Never feeling the diagnosis was

accurate, I began a quest for answers. I read up on alternative treatments,

and found a Neurologist who would prescribe me LDN. Unfortunately, he was a

3 1/2 hour drive.

I kept trying to find answers, and eventually stumbled upon a clinical

trial at NIH, looking at people with a questionable MS diagnosis. I applied

and was accepted, so I flew down to Bethesda in March, 2010. After three

follow up appointments, I was advised that I had a confirmed case of MS,

and that I should begin a CRAB ASAP. I came home defeated, and called to

begin Copaxone. Being needle phobic, this was not an easy choice, but the

other MS drugs all carried the side effect of depression, and with a strong

family history, I didn't need any help getting depressed! The injections

never went well, or got any easier. I only gave them three months, but my

body seemed to be rejecting them with itchy, bruised welts left at every

injection site.

By my third month, my older sister had been experiencing neurological

issues and was seeking answers. An extensive search led her to a savvy

Infectious Disease doc who promptly diagnosed her with Lyme disease. It was

as if a light bulb went off! I had flu-like symptoms for a good part of

2008, prior to my double vision. I started researching Lyme disease like it

was my job. I started seeing the same Infectious disease doc who started me

on antibiotics. I reacted within 24 hours. Within a few weeks, the numbness

that had been spreading to my hands and mid section disappeared. I thought

I had found my answer.

I switched to an LLMD and continued treatment for my Lyme and my

co-infections, and learned about CpN and HHV6 for the first time. After a

little over a year of treatment, I decided to switch gears and go a

holistic route. I never liked the idea of pumping my body full of drugs,

even if they were designed to kill off infections. Besides, I had run the

full Lyme route, subjecting myself to 4 months of Bicillin injections. That

was in March, 2012.

At the advice of the PA at my LLMD, I followed up with a neurologist. The

doctor ordered an MRI and a SSEP and VEP. Everything came back abnormal.

New lesions on my MRI, specifically on my cervix and thoracic spine.

Everything was amiss. An email from my Lyme doctor advising me to begin MS

treatment. Apparently, the activity is consistent with MS. I'm back to

square one. I have no desire to begin MS drugs. I still believe there is a

cause for this, and that my body didn't just decide to start randomly

attacking itself for no valid reason. It doesn't make sense to me... MS

doesn't make sense to me. I've accepted MS as my diagnosis, I have not

however accepted that this is my fate. I am a fighter at heart, and will

move heaven and earth to get to the bottom of this. I believe there's and

answer... I believe there's a cure. I just have to find it.

Best Regards,

Jen Fila

" Absence of proof is not proof of absence "

Dr. M. Kissane