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Member
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Join Date: Jan 2008
Location: Milwaukee WI
Posts: 245
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Member
Join Date: Jan 2008
Location: Milwaukee WI
Posts: 245
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Neuro say, No MS in spite of lesions, symptoms
Saw MS Neuro today, 10 months since the last appt where he wanted another MRI and was so concerned cuz I had new symptoms. I have always had lesions, they didnt change much until 2005, the radiologist saw a NEW lesion on the Pons. No one mentioned this, so I brought it up to him today.Yes he knew exactly where on the PONS too. Ok ok so he looks.
But since to him my neuro exams dont warrant a DX he wont even check this out on another MRI, or do a EMG on my poor legs, the one on my arms is positive.
My balance, cognitive, speech, memory, and fatigue have improved since seeing the nutritionist and having 2 prednisone txs. He thought that was great.
He does his neuro exam today. My right side is slightly ,weaker, I cannot do the heel to toe, nor walk on my toes as my ankles have locked up with my spasticity being worse. The tingling in my face returned after 4 years which is what brought me to him 4 years ago, along with other symptoms.
The buzzing, tremors and electrical shock pains down my legs have gotten worse, now daily. He agreed I needed a muscle relaxer, I showed him I already had one, plus the Baclofen he put me on last year.
Told him bout my autonomic problems which would relate to the PONS lesion. He tells me to go back to the cardiologist that did the tilt table test, but since I am already on a beta blocker for it, why bother? He said thats what they would give me anyway.
I want to know WHY I get these awful episodes where I suddenly am weak, cannot remain alert, my BP/HR shoots up then drops and I look unconscious, but Can HEAR! ALL part of the autonomic problems.
Since I am changing jobs, and probably will not be able to see him again, I am giving UP all these docs. I didn't want a MS diagnosis (tho he originally treated this as MS), today he said its not MS.
Ok, so now I think WELLNESS. Save money from all the meds, the MRI's and other expensive tests. I'll Treat my symptoms with a new PCP. But the spasticity, and locked up ankles has gotten bad enough that walking and exercising is very difficult. My muscles lock up all the way up to my back until it takes my breath away!! He encouraged me to stretch, exercise and do yogo. He and I agree too many meds is not good.
So...Bye bye... will be in limboland forever.... 
Jan
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