Thread: My Story.
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Old 02-12-2015, 08:56 AM
Debbie D's Avatar
Debbie D Debbie D is offline
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Join Date: Jan 2008
Location: Naperville IL
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Debbie D Debbie D is offline
Elder
Debbie D's Avatar
 
Join Date: Jan 2008
Location: Naperville IL
Posts: 5,169
15 yr Member
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Thanks, Sal Pal, for beginning this thread! It is so helpful to read others' stories.

I'd had heat sensitivity since I was a teen, and a dx of fibromyalgia when I was 31 after several years of dealing with pain and severe fatigue (an orthopedist who was treating my knees later told me he and his colleagues were seeing patients move from fibro to MS...I thought, what's MS?).

The first sx that brought me to the doc was a sleeping big toe. Huh...sent me for an EMG, which showed problems with nerve conduction in the right leg. Was referred to a neurologist.

Had an MRI, EVP and LP. The MRI showed several lesions, EVP was neg, LP was clear. The neuro, who was attempting to narrow his practice to migraine sufferers, told me he believed that the numb toe was from long nerve neuropathy, and the lesions were from migraines. I told him I'd never experienced a migraine before. "Sure you have, you just didn't know it."

So he put me on a migraine med, which gave me such severe headaches I wanted to cut my head off. I told him I would NOT take it any longer. Later that year he opted out of my insurance company, so I found another neuro--thank God...

He told me my lesions weren't in the right place for MS, but he'd watch me. A year later my left leg went into a severe spasm that locked my leg for a short time. I also had new sxs, such as cog fog and bladder/bowel problems. He did another MRI, and there were a few more lesions, still not in the right place, but dxd me with MS. He put me on MONTHLY infusions of IVSM and Copaxone, then had me see his PA, who during every office visit pooh-poohed every new sx I had.

I had heard of a neuro one hour away that specialized in MS (the current neuro was a stroke specialist). He sat with DH & me for an hour and looked over the MRI. Said even though the lesions weren't in the "right place" there is still ample evidence, based on increasing sxs, to call it MS, although mild.

He has been excellent at symptom management. He is conservative with steroid treatment, and was appalled by the previous neuro's overuse. He has taken me off of Copaxone after I experienced severe lipoatrophy, which is actually worsening.
I'm currently on no DMD, and he told me last month that two lesions have actually disappeared. My sxs are a bit worse, but I can still get around, love the grand babies, and live a wonderful life with my adorable DH. Life doesn't get any better!
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