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newbie

Posted: Thu Oct 08, 2009 11:31 am
by dreamer565
Hi, I'm new to this site, and new to the idea of MS, and don't even know yet that that is really what i have.

I have been having symptoms since the end of July - what is it called? an exacerbation? Started with the bottoms of my feet being tingly/numb, progressed to like i was wearing some sort "electric" booties - where my entire foot ankle to mid calf felt rubbery and numb, not without feeling, if you touched any spot it would cause like electrified shocks throughout the entire area. This was both feet.

I contacted my regular gp and she wanted me to come in to be checked out. To add to the fun, i had just recently (within the past 2 months) been diagnosed as "pre-diabetic" where my glucose level was hovering at about 126, my h1c was in normal range, but i was told i needed to watch since i could very easily drift into becoming a type 2 diabetic. She wanted to see me immediately when i reported the numbness in my feet because it is possible for that to be a symptom from the diabetes - tho usually not this early in the process. She ruled that out based on reflex responses and had me referred to a neurologist and scheduled a MRI with/without contrast of my lower spine.

Went to he neurologist and was told nothing significant showed up in the lower spine MRI and he agreed that my reflexes were brisk. He also noted that i had babinski reflex where my big toe curls up instead of under which indicates possible cns issue. he also used a tuning fork to see if i could feel the vibrations and i found that i could except when he touched it to the joint of my toes - then the vibration blended with the "tingling" that i felt constantly. he also checked my balance (not very good) and coordination - ok, and vision - also ok.

Next step was MRI of my brain and neck. In the meantime, my "boots" became "thigh high's" with my having some feeling of "normal" returning to parts of my feet and now the tingling numbess/wooden/rubbery feeling now going up to mid thigh. Often it feels like my knees are "burning." And various parts are very sensitive to touch - even clothes or socks/shoes can be uncomfortable, also a constant feeling of "tightness" especially when moving the various joints. I often get bad charlie horse cramps in my hamstrings at night now sometimes making sleeping that much more difficult. Also getting an area around my waist that is also tight and sensitive.

The MRI of my neck did not show anything significant but the MRI of the brain showed dawsons fingers. I was then tested for Lyme and that came back negative. Next i had a spinal tap to confirm that it wasn't Lyme and to test for MS antibodies. Apparently the Lyme test was again negative and I'm told the white cell and glucose levels are normal. Still waiting on the rest of the results.

Its now been almost 3 months since this all started, and i'm still dealing with the symptoms. Some are better, some worse, the tingling/feeling of being on fire (low) never seems to stop. My balance has improved, i no longer feel as if i'm going to fall down in the shower if i close my eyes. Supposedly it is now a matter of just waiting for the nerves to heal themselves since my neurologist seems to believe the worst of the attack is over since some things are improving. He says nerve regeneration is a slow process.

I can't really tell if i have any significant weakness in my legs - i already have had osteoarthritis (bone on bone) in both knees, and this doesn't seem to be helping them, so some symptoms i can't really tell whether it is OA related or to this new "unknown" that hasn't been officially been given a name.

In reading through various sites and posts from others that have MS, i think I have some of the symptoms others report. There are somethings I don't have - or then again, maybe i have had some of them. I know i tire easily especially lately - but is that fatigue or just being tired and stressed from all the various things that have been thrown at me lately? I have had times that i couldn't come up with words I wanted. A couple weeks ago i was talking to my daughter, and wanted to say the word "song" but couldn't seem to get it to form out of my mouth, instead the words that tried to come out were things like "movie" "tv show" and like my mouth was moving faster than my brain and just throwing out words. i ended up taking a deep breath and thinking a minute then i was able to say "song." My daughter thought it was funny but didn't seem to think much of it. Me i thought it a bit disconcerting to not be able to say or find the words i wanted to say. That all occurred some weeks before the feet/leg numbness issues all started.

Sorry to have posted such a long introduction. I just wanted to provide a little background and this seemed as good a place as any to dump out my thoughts on all this.

Thanks for listening.

well its official

Posted: Fri Oct 09, 2009 1:40 pm
by dreamer565
Got word from my neurologist. The results came back, he says i have MS.

I have appt with him next week to discuss the results, what's next, treatment options and start the process.

scary words to hear, even if i was expecting them.

Guess I forgot to tell anything else about myself in my last post. I'm 46, live in Central PA with my partner. I have a 24 yr old daughter. I work as a network engineer.

when i first had the "attack" with the numbness in my feet then legs, my first fear was that i had just gotten over a cold/flu and thinking what if it was Gulliam Barre - My dad had that from a flu shot back in 05. He was completely paralyzed within a few days and then had to slowly and painfully re-learn to walk, etc. He did learn to walk again, but never really fully recovered and kept having set-backs (kidney infections etc) and ended up in long term care after having surgery to remove infection from a absessed bed sore. He never made it back home. I miss him.

When i first went to see the dr, and the neuro both assured me that this wasn't GB - there are some things similar but some things that present differently so they could rule that out. Makes me wonder if they are in the same "family" and if you are suseptible for one, if you are for the other. If so perhaps genetics plays a part. also, my daughter had spinal meningitis when she was 18 months old. she was very sick and in ICU for 10 days, but they caught it in time and she made a full recovery. Later we have seen reports that link Gulliam Barre and Spinal Meningitis. Now we have MS in the family. Seems like too much of a coincidence.

Right now i have lots of questions, but I don't know what they are or how to word them. right now guess i'll just keep reading and trying to understand

Posted: Fri Oct 09, 2009 8:08 pm
by scorpion
Hey Dreamer565,

May I ask where you reside in Central Pa? That is my old stomping ground!!! You will find great support on this forum so stick around!!!