New here... finally dx'd

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!

Thank you Cats for the welcome, I've been enjoying your posts alot! I'm adjusting to that wheelchair thought in order to survive Disney with hubby (he likes the idea becos it gets him to the front of the lines faster!)  

The weight loss was attributed to the Topamax controlling the pituitary which seems to have a minor "spot" (it's under watch as the MRI was inconclusive) so you're right on that one... but the multitude of other symptoms that I failed to remember to list (eye tics, extreme weakness in my legs like a paralysis- buckling knees etc, blurring vision,etc) definitely hit the mark. I was just tickled with the weight loss becos I'd been fighting the whole exercise/diet regimen w/o results and here all along it's the pit, lilterally! (There's a high level of cortisol too, but not high enough to suggest Cushings yet.)

I will suggest the spine because I believe that's where he's going to find his lesion. he's really an awesome Neuro, he hit the nail on the head the very first visit, he just didn't like it and becos of ins problems (we get dropped real quick with MS he says, his sister is a victim) he wanted to be sure before sentencing me. I appreciate him alot for that but now want to get proactive with it.

Is there any benefit to the diets I'm reading about? Has anyone seen any real progress with that?

uppity,

I think we are on the same diet!

Thanks for the welcomes everyone, I'm looking forward to learning more... I actually thought I had quite a bit of "knowledge" about MS but really all I know is the symptoms I've been hunting. It's a new ballgame for me now to actually be ready to deal with it.

Got the orders from my dr today for the new MRI's and he's doing the Brain, Cervical and Thoracic. I kinda thought he'd jump on it all now... he doesn't like missing the boat very long when he knows it's staring him in the face.

Thanks too on the diet note... so many folks are already telling me to go gluten and dairy free and it'll "cure" me and all I can do is sigh. I know they mean well but it's really hard for them to understand it's not "curable," but it's not a death sentence either. The worst part is I look fine so they look at me like "but I get those kind of symptoms too, that's normal!" If only they really knew how NOT normal this stuff is.

Rhonda, thanks! I've been lurking over the past bunch of months hunting info to take back and forth to my neuro while he was trying to disprove himself, I was trying to prove he was right from the start (18 mos ago!) So it's my pleasure to jump in here. I like all the tips, info and help and feel like a sponge that can't soak up enough... so I look forward to being around alot! Thank you!

Now that's an interesting thought... might look into that though hubby already likes the whole wheelchair idea alot! Says he'd be happier knowing he's not "wearing me out" trying to enjoy the parks! I'm adjusting to this thinking now... there's a lot of adjusting right now.