Hi everyone... I've been reading thru many posts and finding a lot of common ground here. I am hoping to learn more way of coping with this disease.
I was finally given my diagnosis this last week by my neurologist after 18 months of his denial of his orginal diagnosis that this is what it is. I've been suspicious for the past 12 yrs but nothing was concrete enough to not make me sound like a hypochondriac describing the symptoms: legs don't work anymore, extreme stiffness after sitting or lying down, leg cramps/spasms, numbness in my feet continuously, creepy crawly sensations up & down my legs when nothing is there at all, chronic bladder/bowel issues- infection, lack of sensation, loss of control, diarhea/constipation cycle every month (dx'd IBS & irritable bladder), right side numbness at night when sleeping all the way down from shoulder to toes, daily migraines, vertigo, walking "drunk" staggering or out of balance, loss of concentration, broken thought processes- memory lapses, numb patch above right knee since '97, numb right foot, numb upper rt quadrant of face, numb hands, tingley fingertips and arm spasms, and finally optic neuritis of the right eye.
Nothing was taken notice of though until I lost fine motor control of my right hand one morning and it didn't come back by the time I was seeing my regular doctor and she noticed the problem as I tried to write a note. The neuro immediately dx'd MS on physical exam but the MRI showed no BRAIN lesions... we didn't MRI anywhere else and the Pituitary showed potential issues, and may still have some yet. The Migraines were managed by Topamax and I lost 35 lbs suddenly (and wonderfully!) so then we sat still until the optic neuritis and numb face set in. Now I'm off to 2 more MRI's (gonna do the neck now) and another Vision Evoke Test.
My whole thing has been to have an answer. The neuro isn't happy though, hates the dx and wishes it were anything else though this appears to relapsing / remitting and I still function fairly well. I have learned to cope with the shortcomings.
Now I need to learn what works, what doesn't, what's best and what to avoid. I'm not keen on more meds just for the sake of meds. I handle the pain with Flexeril and Tylenol #3 for sleep but deal with it during the day. I'm afraid of starting on meds that might not be necessary so quickly. But as I told the doc, I just need to know so I can deal with it now and not find out later I missed the boat now and am paying for it later at a much older age (I'm 52). I want to keep as active as possible. Already I'm not nearly as able to be as "active" as I was. Exercise has to be low impact. Fatigue sets in almost immediately. My stamina is nearly zilch and it's frustrating not to be able to walk, and get out and about like I used to. Hubby looks at me like you've got two good legs and you look fine, why can't you keep going! (He's a Disney buiff and it just wears me out to no end. To use a wheelchair though feels ridiculous if I can keep going.).
So Hello, I'm hoping to learn alot. I've already learned much on my own studies. Now I need to know the practical stuff and this place looks like a good place to start. Thankyou in advance to everyone!