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Date Posted: 21:22:30 07/25/00 Tue
Author: Kimmie
Subject: Re: Letters of introduction
In reply to: Limboland 's message, "Letters of introduction" on 17:01:48 05/26/00 Fri

Hi my name is Kimmie, I'm 38 years old, married for 21 years on the 28th of this month and have two children, both boys ages 19 and 18.
First let me say that the idea of creating such a forum is brilliant for those of us in "limboland" or as the MS specialist that I saw put it "neverneverland".
My problems started back in 1992 after I had what they believed to be meningitis. Since that time I've had episodes of a variety of symptoms that used to come approximately 4 times a year and last for maybe a month and then the symptoms would gradually stop. As time went on, the attack/episodes were coming more frequently, some would be the same symptoms as before and sometimes new symptoms would accompany the old ones. It got to the point that every 1 1/2 months one of the episodes would come on and now they never fully leave. I have some days that are better than others but I feel sick pretty much on a daily basis.
I saw a neurologist in Feb of 1999 and he said my exam was essentially normal. I had an EEG done in Feb 1999 that was normal and in July of 1999 I had an MRI of the brain which was also normal. I have requested a MRI of the c-spine but the neuro says its not necessary. I had two LP's done in Aug and Sept of 1999 which were negative for MS. Comments on LP read "No malignancies, Occasional lymphocytes and cells of pia-arachnoidal origin". I have been following with my pcp on a regular basis and recently I saw a Rheumatologist. I haven't seen my neuro since last summer and called for an appt. today because some new problems have arisen and some of the old ones are getting worse and the soonest appt. they have is Nov 22nd! They have me on a waiting list so if another patient cancels they will get me in sooner.
Here is a list of my symptoms:
Extreme fatigue
Numbess and tingling of arms, legs and occasionally in my mid back
Myoclonus
Off-balanced
Dizziness
Neck, shoulder, mid and lower back pain
Bowel and bladder dysfunction
Difficulty swallowing (50 lb weight loss as a result)
3 bouts of what the neuro-opthal is calling "peri-optic neuritis"
atrophy of optic nerves
red/green desaturation
Weakness
Falling
Sensation that bugs are crawling on my skin
Numb tongue
Sore tongue
Arms and hands are asleep upon waking every morning
One episode of right hand paralysis that lasted about 5 minutes
Body aches and general feeling of having the flu
Petichiae Rash (Feb)
Blisters in mouth
Itchy skin for no apparent reason
Reflexes 4+
Difficulty concentrating
Choppy sentences (Sometimes getting through 1 sentence can take forever because I know what I want to say but I can't get the words out)
Muscle/joint aches
Jaws and throat muscles very tight in afternoon and triggers the swallowing problems to start
I'm sure I left out a few but you get the picture.
I've had 3 lumbar spine surgeries (2 which were fusions), end-stage DDD, arachnoiditis and "a demyelinating disease of the CNS unspecified at this time". I post on the MGH forum under spinal disorders, ms forum and occasionally the neuromuscular forum. Alot of times I don't know which problem is causing which symptoms. I don't know how I would have made it this far without losing my mind if it weren't for the people on those forums. They are very supportive and understanding. Alot of my friends don't understand and sometimes I think they question my credibility as far as the misery I'm in on a daily basis. All they know is "I'm not the fun person I used to be". My mom is the most supportive person. My husband tries to be supportive but he has his moments when he makes me feel very guilty about being sick and I think some of it is rubbing off on my kids. Well I guess I've babbled on long enough and you probably learned a little more than you wanted to about me but thanks for listening. I hope to make new friends on this forum and like I have at MGH.
Kimmie

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  • Peg's Letter of Introduction -- Peggy, 13:17:14 07/26/00 Wed
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