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I am so confused (sorry...long)

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Old 02-03-2005, 07:20 PM   #1
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Join Date: Aug 2004
Location: Oakland, NJ
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nmamommy HB User
Question I am so confused (sorry...long)

I believe I am new to this board and am looking for some help. I have Fibromyalgia. I was diagnosed 2.5 years ago. My pain had continuously increased, and my abilitiy to be active has decreased.

A little over 1 year ago, my doc had some concern that some of my symptoms indicated a neurologic problem. I saw a neurologist and had my eyes checked. I had an EEG, EMG, brain and cervical MRI, and evoked potential test. They found nothing.

6 months ago I hurt my big toe, left foot. A series of x-rays and an MRI showed nothing. I was in a cast for 2 months and have done 1.5 months of PT. I still have severe pain in the toe. My left foot and lower leg is discolored and always cold.

I feel like I have begun to lose feeling in my body, on the surface. I have also been having some urinary incontinace. I also am badly constpated. It has been blamed on my pain meds, but I never feel like I have to go, and it is hard for me to feel myself using the muscles necessary to have a BM.

Then there is my eyesight. I not only see floaters, but at times I seem to have temporary blind spots. I have a hard time looking at certain contrasing colors.

I don't know what to do, but I know I don't want to go thru another battery of tests just to find out nothing is wrong. I am scheduled for some kind of doppler test to check for blood flow problems.

I know you all can't diagnose me, but could any of you let me know if any of the things I have described are symptoms you have had or that are known symptoms of MS?

I am at such a loss of what direction to go in right now. Any help would be so greatly appreciated!!
Many soft hugs,

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Old 02-04-2005, 11:59 AM   #2
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Join Date: Mar 2003
Location: Cranbury, NJ
Posts: 219
SuzU HB User
Re: I am so confused (sorry...long)

MS certainly does cause neurological symptoms, but there are a lot of diseases that do. Fibromyalgia can even cause some of the things you are describing.
If your brain MRI and other tests were negative, the only other test I think you haven't had is a lumbar puncture. I don't remember-did you have an MRI of your spine?
Apparently, a person can have MS for years and not show anything on these tests.
But your symptoms do sound vascular to me, considering how you are describing your foot. It also could be RSD. Have you been tested for lupus? It has some vascular components to it that could also be causing your symptoms.
My suggestion would be to take yourself to a major university hospital and get a complete work-up.
I have neuro symptoms and all negative tests so far myself. My neuro is leaning toward fibromyalgia, oddly enough. I did have my spinal tap yesterday and am awaiting the results.
I think I will go to a MS specialst regardless of what my tests say, just to be on the safe side. I am also planning a visit to a rheumatologist and an endocrinologist for good measure.
I know it is frustrating to be in this place of limbo when you are feeling so crumby. I pray that you will have a diagnosis, treatment, and most importantly, relief of symptoms and peace of mind soon.

Old 02-04-2005, 01:23 PM   #3
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Join Date: May 2004
Posts: 1,069
apriltones HB User
Re: I am so confused (sorry...long)

check rsd board, sound alot like that!!! they are really nice on there too, just like here and fibro board, love aprilxx

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