New here... finally dx'd

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D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 3/3/2008 11:03 PM (GMT -6)   
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!
 


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 3/4/2008 6:36 AM (GMT -6)   

I'm sorry it's taken you so long to finally get a diagnosis!  Welcome to the forum; I hope we can help you with our experiences.

I've had MS for more than 25 years. I'm 61 now.  I've been on Betaseron for over 15 years. It is one of several disease-modifying drugs that are available now. (Nothing much was available when I was diagnosed).  I jumped at the chance to get on it when it did become available -- anything I could do then..and now..to slow the progression of the disease seemed like a reasonable choice!

None of the drugs will help your symptoms -- only slow the progression of the disease (which of course is a very good thing!)  There are meds available that can help with bladder and bowel control, though, if that is of concern.

The sudden weight loss doesn't sound much like an MS-related situation. I hope you told your doctor about that, as there can be lots of reasons for that -- just not a lot of them neurological!

The only other comment I'd offer right now is -- please don't be reluctant to use a wheelchair! Don't think of it as "giving in" to the disease -- think of it as a TOOL to help your mobility!  You may be surprised to see how your world has shrunk because it's increasingly difficult to get around..and a chair can be SO helpful to open it back up!  Why waste your energy just trying to "keep going" when you can get so much farther, and so much easier, in a chair??

 

Oh -- one other thing. YOu might also press for an MRI of your spine. A lot of your symptoms sound to me (and no, I'm not a doctor!) sound like they might be originating from lesions on your spine (yes, myelin is there, too, and can be compromised with MS there, too..)

 

And again, welcome.


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 3/4/2008 10:39 AM (GMT -6)   
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?
 


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 3/4/2008 10:50 AM (GMT -6)   
Most of the diets are healthy -- but they don't seem to have much effect on your MS. I know you'll find lots of stuff on the internet, anecdotal information about Swank, for example...but there's no real scientific evidence.

I'm on the seafood diet, myself....I see food, I eat it. :)
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


mountainboy1984
New Member


Date Joined Mar 2008
Total Posts : 5
   Posted 3/4/2008 11:05 AM (GMT -6)   
uppity,

I think we are on the same diet!

Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 3/4/2008 11:06 AM (GMT -6)   

Welcome to the board D’awesome,

 

I’m sorry to hear about your diagnosis, but glad you now finally know what you’re dealing with and can begin treatment. This great group of people, and I hope you will find this board to be a good source of support and information.

 

Sunny


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 3/4/2008 9:02 PM (GMT -6)   
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.
 


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 3/4/2008 9:11 PM (GMT -6)   
Hey D'awesome

Welcome to the board! I'm late coming in here, but wanted to join in the welcome and let u know i'm so glad u found us and decided to join! This is a great group of people who i think u'll come to care a lot for. Please feel free to ask question or post any helpful info u may have. We look forward to getting to know u! Again, welcome to the board!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 3/4/2008 9:39 PM (GMT -6)   
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!
 


photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 3/5/2008 1:34 AM (GMT -6)   

Hi and welcome to the forum :-)

Last September I went to Disneyworld, and rented a scooter.  It was awesome!  I really wouldn't have made it one day without it.  It's another option if you don't want (aren't ready) to go the wheelchair route, also, no one needs to push you around all day so you're free to go wherever you like. 

Just another option available to you.

Shar

 


Diagnosed with MS April 2006
 
Started Tysabri Nov. 2007


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 3/5/2008 10:27 PM (GMT -6)   
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. yeah
 

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