Multiple Sclerosis (MS) Support Group

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Brain & Nervous System
/ Multiple Sclerosis (MS) Support Group

Questions with no answers

melevebos
melevebos
Some of you may remember me from a couple years back. MS was a possible diagnosis at that time but I was told because my MRI at that time was clear that I did not have MS.

I have never had an LP, never had an EMG but have had tons of symptoms and now have a daughter who is only 11 that they suspect has MS due to symptoms and several MS like lesions in her brain although her LP was negative.

I am currently having issues with my hands and wrists being half numb and tingling as well as my right shin of all things. My shin has been off an on for a couple weeks and my hands have been all day today.

Any thoughts? How do I find a doc that will take me seriously? I did call an MS specialist a few months back but they didn't have any openings for 6 months.

I'm in Dayton, OH. My daughter is being seen at Children's Medical Center and currently they have taken a wait and see approach until September when they plan to redo the MRI to see if the lesions have changed. Her last one was in March.

thanks all!!!!

Love,
Mel

You can also email privately if you prefer at mbous@woh.rr.com
hmmmingbird
hmmmingbird
You need to be proactive about this. When they tell you it'll take 6 months to get an appointment, tell them that your hands and arms are numb, that it's a safety issue (that's worked for me), and that you need to be seen sooner rather than later, so when can they fit you in? Be insistent.
If you can't see the MS specialist right away, get an appointment w/his or her associate, a neurologist in the same office. Chances are good that the neuro will consult with the MS specialist if s/he finds something that's out of his/her area of expertise.
lorrieonline
lorrieonline
Stay on top of them, Mel - I hate the intitial waiting - Try asking them to call if there is an opening and keep calling back asd well. You can be as cordial as can be while you are being persistent. I'd put them on speed dial and call every other day - beats waiting 6 months. How about your general practitioner's office - can they try to call for you too? Hope you get in and start getting some answers.
Hugs,
~Lorrie
melevebos
melevebos
The problem is that hte suposed specialist at Cleveland Clinic said that MS was ruled out due to the a negative MRI (with NO other testing) despite the fact that her own notes said i presented with symptoms suggestive of MS???????? And a parkinsonian type tremor of the head and arms.

But because the specialist that I drove 4 hours to see said I didn't have it based on MRI so no one locally will take me seriously because the "specialist" already "ruled it out".
deleted_user
deleted_user
Did they rule out patrkinson disease too? I don't know anything about that one-so I dn't know how that is done? Too complicated of a situation for me---but I think yopu should continue to go to you PCP everyytime a symptom comes up. When I was diagnosed the doc did not care about any symptoms I had in the past, he was only interested in symptroms I had thart I saw a doc about--whether a cause was found or not. Because symptoms I had enn a doc about meant thayt easy thing it could have been are ruled out--leaving it more likely to have been MS....

That was after I had an MRI that showed positive for MS--everything was out of oreder for me. It was stroke or MS then when the MRI said MS they did the medical history & blood tests.

So I don't have experience with an MRI not showing MS but it sounded as if it was important that I had seen a doc over every symptom in the past & I don't believe MS can be ruled out in the future, it can just be ruled not visible enough for an MS diagnosis at the time. But go to you PCP to get all theses symptoms medically documented.
melevebos
melevebos
Most all of them have been documented. But they act like I am crazy or a hypochondriac. I will be fine for months and when I am I don't see doctors. I stay far far away...lol.

But during flares, I try to get answers and never get any.
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