To All - Multiple Sclerosis Message Board

grits216 · 10-28-2006, 02:57 AM

Hi. I'm Grits216 (Girl Raised in the South), a newbie to this site, but not to MS. I'm a former special education teacher, presently "disabled", and far too young to be retired. Happened on Healthboards while surfing - seemed like a good place to ask questions, read about others' experiences with the MonSter, gain insight on how others live and deal with the disease daily. I was also looking for an outlet, other than family and friends, where it was safe to vent frustrations and from time to time, simply sit on the "pity pot". MS was suspected in '93. I was too busy living, working and raising two young children to follow MD's instructions to have subsequent yearly MRI's. Ignored many symptoms over the years - blamed them on pinched nerves, clumsiness, stress and just plain "getting older". In April of 2000, I woke up to complete numbness on my right side. Within hours, I could no longer hold the pen to sign my name or even lift my right foot to walk. Decided it was time to get this "pinched nerve" checked out. Went to Urgent Care and that doc quickly summoned an ambulance for a not so free ride to the hospital which was a mere block away. Completely oblivious - I had no idea what all the muss and fuss was about. I was seen by an ER doc almost immediately after arriving at the hospital. That is virtually unheard of if anyone is familiar with Greater Phoenix area hospitals. It finally dawned on me that this might be more than a "pinched nerve" and "they" were whispering "stroke" while running a multitude of tests and asking even more questions. Finally, after a few hours, the on-call neuro with CAT scan results in hand, came to deliver the news. A brilliant man, but lacking bedside manner, declared very matter-of-factly, "You didn't have a stroke. You either have a brain tumor or MS." Believe it or not, the first thought that came to mind was - does that mean I'm one of "Jerry's Kids"? Talk about ignorant! More tests and a MRI verified MS. After solumedrol, a week in telemetry(sp), PT and OT, I made it home. I had to relearn how to walk, write, and feed myself and listen to my kids say, "Mom, use your right hand." Then I had to learn about the MonSter. I was able to return to teaching full-time and continued until last spring. I was okay as long as I stayed on Avonex, along with a long list of additional meds. For me, the worst part of having MS was the utter exhaustion and pain in my feet and legs. Then last spring I was in a fender-bender, totaled my car and had back to back exacerbations, including my first real bout with optic neuritis. Solumedrol helped, but not to the point of remission, not this time. The MonSter decided to progress and my MD and neuro agreed that it was probably time to apply for disability. I/we did and I've been on full disability since last September. That's my story - the moral is - Don't Ignore Your Symptoms. Does anyone know anything about service/companion dogs? I can still walk, but balance is another story - I take a lot of falls and have even walked into walls (hey, that rhymes) .

rilsam · 10-30-2006, 03:11 PM

Sorry for everything you've gone thru. My problems are mild but painful. I'm not dx yet but my neuro thinks it's just a matter of time. I've been a stay at home mom for 9 years. My MS symptoms started about 8 months ago. My girls have been pretty good at helping me out but I've often considered a service dog. At this time I have a 14 year old dog who doesn't like any other dog so I have to wait. What I do know is that they can run about $6,000 to $8,000 or more. There is a waiting list and you have to meet certain criterias. There are books on how to train one yourself. They also sell the red dog vests on line. Usually you can look up a local training center and ask advice. I thought a dog vest that is used for the blind, that has the metal bar, might be good for balance. You can tell I've thought alot about it. It will probably be easier to train one yourself and teach it the things you'll need help with. That's what I hope to do one day.

grits216 · 11-01-2006, 01:21 PM

I'm 48. I'm sorry - you're so young. But, maybe there's a silver lining - they found it early and there are meds to slow it down and lessen the damage. Out of curiosity, did you have mono when you were younger? They seem to feel there's a connection.

grits216 · 11-01-2006, 02:19 PM

Thx for the info on dogs. I don't know why I never thought of training one myself and I've had dogs all my life. Duh, huh? Books too - you had a great idea. You know - I feel sorry for all of us who live with this disease. As for me, I was relieved with the diagnosis. At least the symptoms had a "name" and it wasn't all in my head (so to speak). I try to maintain my sense of humor and view it as an adventure. It's definately not a boring disease and it does have humorous aspects. Seriously, how many people do you know, who can walk smack into a wall and be perfectly sober? In fact, several night ago, I had cramps in one foot. It ouched, but I had to laugh. My second toe had cramped under the big toe toward the inside of the foot and it looked ridiculous. Had no no idea one little human toe could contort itself into that position. Thought about waking up the rest of the house saying, "Hey, you gotta see this, it's cool." Sense of humor - it works.

lilc · 11-01-2006, 05:07 PM

Grits, I live in Chandler! Oh boy, do I EVER know what you mean about the ERs in the greater PHX area!!! My mother died in 2001 due in large part to 30 hours in ER, having a heart attack, without being seen by a doctor. (She was brought in by ambulance to a Banner hospital in Mesa.)
So you really should consider yourself incredibly blessed!

By way of introduction, I'm 49, diagnosed a little over a year ago with "mild MS". I was dx'ed in Washington DC, where I work (I'm blessed, too - haven't had to rely on PHX area doctors).

I'm delighted you found this board, it is indeed a place where you can come whenever you want/need someone who just plain understands. This board was a "lifeline" for me through my dx process, and continues to be very important to me. While I no longer "visit" several times a day, I come here to check up on my friends, offer encouragement when I can and to post when I need support. I've found that, while the "regulars" may cycle, the support is always here.

I hadn't been here in maybe a week when I logged in tonight to post a new thread, but wanted to welcome my neighbor from AJ first!