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Multiple Sclerosis Message Board


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Agravy,

I pray you get some answers soon.I also have high elevated myelin basic protein in the spinal fluid.20 years ago they used this as a marker for MS.I had a long visit with GP yesterday and he was mad at the neuro.

The neuro has canceled my last appointments,I have one on Monday.I also have one legion of the brain.No reflex in right ankle and now very minimal in right elbow.I'm right handed and each attack has taken something away from the right side.I've had MRI's and LP.I've seen several specialist and many diseases ruled out.I ask my GP if the Myelin Basic Protein elevation is what is causing all the sensory problems,he said yes,but the neuro community don't use it ,he stated it was non-specific.The heck it is!My symptoms of numbness are quite real and very specific,especially when the reflexes are gone,they don't come back.

Some day I'm gonna write a book on the stupidity of what Drs say to patients.If they only knew how some of their words hurt patients and their disconnerning attitudes.I had a Neuro tell me it was all in my head,I replied apparently,there's a lesion there effecting my vision,its in the central nervous system,elevated MBP,causing the multiple sensory problems,its also in my ankle there's no reflexes(which I have lost in the last year)and now wear a leg brace to keep the right leg in position.Go figure.He told me I suffered from depression,stress and anxiety.Not depressed,I have a great attitude and have kept my sense of humor thru all this,not stressed and I'm on to many muscle relaxers to control the spasticity,I couldn't get excited if I wanted to.But I did tell him I was going to need anger management ,because he was slowly peeing me off.

My last attack was 12 days ago after a long hot bath,getting out of the tub I passed out,hubby was going to call the EMS,oh no he wasn't,with my nakedness hanging out,don't think so.I'm finally getting back to normal all except the slow reflex in right arm.GP was not a happy camper,since no one called him,but after seeing several DRs in the last year,ya just get tired of hearing the same old crap.He does want to do a new series of MRI's this week,but have to go thru neuro do to insurance.

I have also been left with a bladder problem,very little fore warning that I gotta go,I have banned my children from the down stairs bathroom,its definatly not a pretty site rushing for the bathroom.Right leg goes this way left leg goes another way.Needless to say there are no longer obsticles in the path of the bath room.My 14 year old son just shakes his head.Not to long a go I wet my pants on my way home from the store.Thank God my kids were not with me (teenagers) they'd tease forever.I called my mom and was telling her,she said not to be upset,I wasn't upset that I'd wet my pants I was upset I have cloth interior and its my new truck.

Lestoby my mother is concerned like yours,she always ask why can't they give you a definate answer.My GP knows I have MS,but we are all stuck with that McDonald score.I bet if he feels like us he'd change his dang gone score.I use to go to bed scared,not anymore.Its usually when I wake up,its what body part ain't gonna move today.Somedays they all say not me ,not me.

I take each day as they come,what is,is.No matter what ever comes out of this,I know how I feel.I have to go by what my body tells me.I'll keep using the maintenance drugs to control the symptoms,but oh boy if these new MRI's reveal a more defined diagnosis.I know a few specialist that gonna hear from me.

In all honesty how many of us want to feel this way,if we were not feeling these symptoms,why would we keep seeking medical advice and furthering the testing.These DRs and test are expensive and insurance only pays so much.I honestly think that the neuro community needs to listen a little more and actually listen to there patients.I know there hands are tied on the criteria's,but be honest and continue the care and stop dismissing us undiagnosed patients as if we are wacky.Explain this disease and let patients know it's a wait and see process,instead of scaring the crap out of people.No one wants MS ,but not knowing what is causing there symptoms is worse than MS itself.

Sorry to vent,I just needed to say all this.

prayers to all
toni





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