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Old 02-21-2013, 11:20 PM #1
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Default More than a lil fustrated...er...frustr..oh, you know

So, here's the thing...still in Limbo Land. GP still says MS...1st neuro is defunct...evidentally he decided it was too tough (or the senior partner yanked him out--), he's gonesville.

Super specialist in Green Bay (his specialty is Parkinson's w/some research in MS studies) said I didn't need to come back after LP was negative; even though physical testing showed some abnormalities & white matter spots are NOT indictive (sp?) of straining or some unknown brain injury (I haven't been in a car accident, been dropped on my head or hit with a baseball bat). However, I was told to keep seeing my GP for continued symptom monitoring & if needed, go to local hospital for eye problem or dizziness.

Neither Doc (except my GP) even thought to ask about the upped dosage of Neurontin (which was causing added symptoms)...easier to say, "Heh, you're depressed," when, clearly, I'm not.

So...here's the thing. For four months now, been feelin' pretty good. Balance has been a lil wonky & words come out pretty easy. Fatigue seemed all but gone and muscles did what I told them to do. Pins & needles on face still there but manageable.

The last few days, however, I can't seem to say two sentences without tripping on words; can't remember even the "picture words" in my head to try to play that game where you get others to guess what word I mean. I can't file at work because my thigh muscles don't want to work again. I can squat down but can't get back up without hauling up on the metal drawer handles, to pull my legs back up & it takes alot of time to rebalance my legs under my body, before I can take a step.

Fatigue is back.

My left eye hurts & feels like the outer half of the eye isn't working. It takes alot of effort to focus or refocus after turning my head. This is something new
and it's scary as all get out.

The bottoms of my feet feel like half of surface won't hold my boy upright. My balance if limited because of it. Walking is super funky.

The last new thing is...ok...weird...I get twinges or spasms in my lower back...right above the hipbone. They come on when I am sitting & twisting & make my eyes water. I'm not a whiner...well, mostly not anyway (I have my days; as most ppl do).

I don't know...but if it walks like a duck, quacks like a duck & most of the duck keepers I know tell me it's a duck...why won't the duck tell me it's a duck & be done with it. It's been 3 years; after being disqustingly healthy & not going to docs...can't someone tell me it's a duck.

All tests for everything else have been negative...seems like something is positive, right?
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ANNagain (02-22-2013), SallyC (02-22-2013)

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Old 02-22-2013, 10:54 AM #2
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The truth is New2net, is that we MS peeps know
it way longer than Docs are willing to admit. They
play it safe while we suffer on, and they make us
the fall guys by implying we are just nuts!!

Take a deep breath and ask your PCP to treat
your symptoms as best as can and live your life.
If it is MS, it will raise it's ugly head again...ugh

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Old 02-22-2013, 12:11 PM #3
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New2net98,

I understand and can relate to everything you have said. Please be careful w the filing. Some have pulled the 4 drawer file over on top of themselves instead of getting a hand up.

Best to you,
ANN
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Old 02-25-2013, 10:45 PM #4
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Taking a break...thanks for the support! Been so focused on trying to figure this all out & not getting anywhere; so will pass on all the drama & focus on going back to being whatever I used to be.

Luck to you all on your journeys to enlightenment
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