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Old 12-28-2004, 10:41 AM   #1
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Question Is This What To Expect? Frustrating & Depressing

Hello:
I am new to this forum, but not new to a lot of what I am reading. I have for 18 months now seen a Neurologist and I have had 2 MRIs, both have shown no abnormalities. I have had very weak legs with multiple spells (4 or so) during this time that made it almost impossible to walk, after each time I would eventually recover but continued to keep the jello type weak legs. Last go around about 2 weeks ago I developed a very weak right hand. I have severe migraines, at times 2 a week, other times only 4 or 5 a month. They usually last 4 hours to a couple of days. I have very little pain (outside the migraines) but lots of tremors and pins and needles (leg, hand) and unbelievable fatigue at times that seems to last for days not hours. I have the drooping foot on the right leg and ever so often (1 to 2 percent of the time) my right leg just falls out from under me and then comes immediately back (no pain). I have had multiple blood test over time and show a slight ANA elevation each time but nothing drastic. I have other issues with reflexes and walking the Neuro noticed. As of now all that is said is it could be MS, Lupus or something else. The next thing is to schedule a Spinal Tap (not sure about that one)... and meet again in January with the Neuro. The questions are: Does this sound like MS, Does it take this long (over 2 years with GP and Neuro so far). I feel like I loose it at times, fatigue that stops me in my tracks, weak legs that keep me limited and no Dx from the doctor - it can be quite depressing. Any thoughts or testimonies would be greatly appreciated.
Thanks!

 
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Old 12-28-2004, 12:36 PM   #2
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Re: Is This What To Expect? Frustrating & Depressing

It sounds like all the right tests are being done. I have heard from many people that it isn't unusal to wait many years for a diagnosis. I was lucky that I was diagnosed right away although my MRI scans were clean at first. It was about 1.5 years after a major flare-up (and diagnosis) that lesions showed on my brain MRI.

I'm sorry to hear about your illness. Mobility and fatigue issues are depressing. Be sure to be talking to mental health care professional as well. I waited 6 years after my diagnosis to talk to a professional, I'm so glad I did, but I wished I had gone sooner...

 
Old 12-28-2004, 05:01 PM   #3
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Re: Is This What To Expect? Frustrating & Depressing

Thanks for the quick reply, emotionally it is up and down. How long have you been dx with MS? If you don't mind me asking what did the doctor use as conclusive. It seems like without the MRI showing anything that I will not be dx. I think once we have a firm dx of what it is and if it is chronic (can not be fixed with surgery or medicine) I am sure I will get professional council and support, probably for the whole family.
Thanks again!

 
Old 12-29-2004, 08:11 AM   #4
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Re: Is This What To Expect? Frustrating & Depressing

I was diagnosed 7 years ago. I came away from the hospital (MAJOR flare-up) with a MS Probable diagnosis. I was lucky in that the neurologist on call when I was hospitalized was an MS Specialist. Even so, there was a bit of a disagreement among the doctors and I was part of team consultation at the hospital. Their confusion was that I am also a Type I Diabetic, so some of the docs were convinced that it was the Diabetes that was acting up in some weird way. The doctor based the diagnosis on the nature of the flare-up: vision loss in one eye (Optical Neuritis). gait problems (one leg buckling) and numbness in my legs and half of my face. ON is very typical of MS, so coupled with the mobility issues, that's how I got the MS Probable Dx.

It wasn't until I showed lesions that I was MS Definite. Actually, I'm not sure that anyone ever gets an MS Definite Dx. the doctor said to me, "there should be no illusions that this isn't MS." That was a hard day.

 
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