New Neuro says I'll end up in wheelchair......but I believe in LDN! What to do.

January 25, 2010

I had an appt. last week with my new neuro. He is in the same group of neuro's

I've been with since dx'd with RRMS in May 2008. He previously worked for one

of the top hospitals in the US, and his business card reads:

neurologist/neuroimmunology/clinical research.

He asked me which of the CRAB drugs I was taking. I told him I take LDN & had

he heard of it. He said he knew all about LDN and it does nothing for MS! I

told him LDN has alleviated about 8-10 of my symptoms and that I feel

great....except that my balance & walking is becoming worse. I can walk around

the house & yard unassisted, but need a cane for VERY short distances, an

electric cart in larger stores like Walmart, but to even think of going to the

mall I need to be pushed in a wheelchair.

I told him I've been on LDN since Nov. 2008 and having great results....except

my legs & balance are getting worse. He said (very firmly) that LDN may very

well help my MS symptoms, but it will NOT stop or slow down progression of the

disease, and wants me to talk to the MS nurse about starting on Avonex or

Copaxone right away. If I don't, he as much guaranteed I will end up in a

wheelchair!

As for all the symptoms LDN has alleviated, he said he can give me other meds

for those, then asked if I was depressed. I said not at all, but I do get

fatigued, and can easily spend 12 hours or more in bed after cleaning my house,

doing laundry, or just having a busy day, and he prescribed me Nuvigil. I asked

what that was for. He said to give me more energy. How many more new meds will

I have to take for my symptoms if I go off the LDN!!

I talked with the MS nurse & told her I believe in LDN, but do not want to end

up in a wheelchair. I also asked her, " can't people on the CRAB drugs still end

up in a wheelchair? She said, yes, they can. She then said, since the Dr. did

not order an MRI, she is going to suggest that he orders one right away. That

will tell us whether there has been any progression of the disease in my brain

or spine since 2008. If no progression, then the LDN must be working!! I liked

her idea!!

The reason for my email is.......are there any statistics as to how many MS

patients are or had been in a wheelchair with or without using LDN? Any help

regarding my decision to remain on LDN or start on injections, either way, would

be greatly appreciated.

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