Opinions sought

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Opinions sought

Postby desperate » Sun Jun 20, 2010 1:04 am


As my uid implies, I am at my wit's end with this and need some advice. I appreciate any replies I get.

My fiancee (97 days to go) has been very tired ever since March, when a useless doctor told her she had flu. All she has was the tiredness. Floored for 10 days then back at work.

However a month ago she got worse. It started with a couple of collapses while walking, then constant headaches and the tiredness came back. Some days she could walk ok, others she couldn't get out of bed. Sometimes she can walk a little bit before the leg weakness sets in, then gets wobbly. She hasn't been able to concentrate, so can't work or study.

Sometimes she can't move her legs at all, then later in the day she's fine. Recently it's been just the right leg sometimes as well.

A few times she has had fits, which start with shaking in the legs and spread throughout the body (though she remains conscious). Sometimes her legs get really cold below the knees; really cold. Sometimes she finds it difficult to breathe (she has been referred for a pulmonary function test separately, as she blew 250 on the peak flow and is supposed to do 475). Her blood pressure has always been good as has the oxygen level in the blood.

She has had a brain MRI (clear) and the full gamut of blood tests. Her physical neurological exams all come up normal (she has been in hospital for 2 weeks) so the doctors haven't sent her to EEG/EMG yet. They are also trying to avoid a LP.

The doctors have said they don't see the need for a spinal MRI due to no demilination in the brain. this doesn't sound 100% right to me.

I was wondering if this sounds familiar anyone here... Do you think I should be leaning on the doctors to do the neuro testing or are they right to go down other avenues. My nature is to question everything, especially when it comes to my loved ones. Please help.


God bless you all.
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Re: Opinions sought

Postby sbr487 » Sun Jun 20, 2010 3:13 am

desperate wrote:The doctors have said they don't see the need for a spinal MRI due to no demilination in the brain. this doesn't sound 100% right to me.

At least in theory, one can have spinal lesions and no brain lesions ...
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Postby shye » Sun Jun 20, 2010 6:59 am

Not just in theory--
If you go thru this site (immense undertaking) you will find discussions on where lesions are--
mine are only in brain, others have only in spine. We have tried to tie this to symptoms, and seems the brain lesions are more prevalent with persons with Optic Neuritis incidents; most of us with only brain lesions are not experiencing the lower limb problems to the degree that is shown with those having spinal lesions.

If I were your fiancee, I would demand a spinal MRI.

Best wishes.....
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Postby Algis » Sun Jun 20, 2010 7:36 am

My lesions are in the spinal cord; I have no headache, no brain fog, no eyes problems, no much fatigue. But have both legs and right arm useless; spastic and with a high degree of stiffness ...

This might explain that...
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Postby msgator » Sun Jun 20, 2010 12:27 pm

it took three years to diagnose me in part because they kept doing MRI of only the brain and the finally checked the spine where they found some. I now have them in both locations. Definitely possible to have MS w/o brain lesions. I did have a lumbar puncture to confirm my diagnosis but that was 99 and you had to be positive on two tests to be diagnosed.

My heart goes out to both of you.

always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
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Postby desperate » Mon Jun 21, 2010 5:44 am

Thanks all for your help.. I kicked up a stink at the hospital so now she is getting the spinal MRI Wednesday. Neurologist not budging on the EEG and EMG though. UGH may have to go to a bigger city if this is clear.

But really, thanks again.
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