Just Found out I have MS and have lots of questions

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Crittle
New Member


Date Joined Nov 2006
Total Posts : 4
   Posted 11/24/2006 9:43 PM (GMT -6)   
Hi everyone,     I just found out on 11-13-06 that I have MS.  I had a MRI due to numb lower body for 8 weeks.  Just wondering when or if feeling is going to come back.  I have already gone through a round of steroids (that did nothing), just gave me lots of energy.  Each day my legs feel like that get heavier and heavier.  Family loves to watch me walk or attempt to walk.  Would appreciate any advice I can get.  Thanks   Crittle

Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 11/25/2006 12:09 AM (GMT -6)   
Hi Crittle,
 
    Welcome to the forum.  Sorry to hear about your recent dx but there are wonderful people here so feel free to ask away!  We'll try to help if we can.  The numbness is a very common symptom and for some people it does come and go, but for others it never really does go away.  I'm sorry the steroids didn't work for you, they sometimes can be effective with numbness.  How long ago did you stop the steroids?  They can have a delayed effect in some people. 
 
    If it's effecting your ability to walk you could ask your doctor if they'd be willing to try any medication.  Sometimes neurotin might help if you have any pain along with it such as burning or shocking sensations, and I believe some antidepressants like Elavil are sometimes prescribed for it too. 
 
    Good luck to you! Please come back and let us know how you are doing.
 
Kimber
 
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uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 11/25/2006 6:48 AM (GMT -6)   

Hi, Crittle,

Unforunately, about all I can do is echo what Kimber already said...sometimes the steroids are helpful, sometimes they're not.  Sometimes it takes awhile for you to see effects, though -- so if it's just been a couple of weeks, there might still be some recovery from the numbness.

If your legs worsen, then you might need to call your doctor and see what else he might suggest you try.  And if you're having difficulties walking, he might suggest a round of physical therapy, where you'd learn to use various mobility aides, like a cane, to assist you.

A lot to have to digest pretty quickly, I know.  I'm sorry.

 


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


mesea
Regular Member


Date Joined Nov 2006
Total Posts : 162
   Posted 11/25/2006 10:24 AM (GMT -6)   
I'm very sorry about your dx. Mine just came in Sept. I know it's a lot to deal with.
I'll echo what the others have said. I can give you recent personal experience tho.
My MS was affecting my right eye. I had the iv steroids back in the beginning of Oct. They didn't seem to be working at all for me. However, over the last week I've noticed a marked improvement. The pains Iwas having aren't as often or as intense and the blurriness and double-vision have improved. Be patient. I know that's hard butgive it time. You may see some improvement over time. Welcome to the board. This is a great place. Bye !!!

Sheila

Crittle
New Member


Date Joined Nov 2006
Total Posts : 4
   Posted 11/25/2006 11:36 AM (GMT -6)   
Thank you all for your help. I greatly appreciate it. I just have lots questions but have not come up with all of them yet. I go to see a neurologist on 11-29-06 in pittsburgh. I really hope that he will be able to shed some light on somethings. I am really glad that there is a place like this where you can talk to other people with the same problems and symptoms. Thank you

photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 11/26/2006 12:53 AM (GMT -6)   

Hi Crittle,

Just wanted to say sorry to hear about your diagnosis.. and glad you found this forum..

welcome!

Shar


Diagnosed with MS April 2006
Longstanding anxiety and depression
Currently on Betaseron


Denda
Regular Member


Date Joined Jun 2006
Total Posts : 329
   Posted 12/17/2006 7:52 PM (GMT -6)   

Hi Crittle and All -

I'm sorry to hear about your dx.  I have not been officially dx'd yet, but my neurologist has told me that it's a pretty good possibility that I am in the early stages of MS.  I went to her for rt hand tremors, random rt side numbness and random body tremors.  I had an EEG which came back normal but showed signs of possible minor seizure activity, so since I have migraines as well, I am now on Topamax, should be on 100mg/day, but 50mg/day is making me dopy, it's helping so far, so we're hoping I don't have to bump it up to the 100mg.  My MRI came back with multiple white spots on my brain which I was told could be one of the following 1) an infection 2) old severe brain injury 3) old stroke scars 4) early stages of MS.  I have never had a severe brain injury, so we know that's not it, I have no idea if I have had a stroke (I'm 38 years old and extremely healthy).  It's hard to determine if I'm experiencing the 'normal' symptoms since I've been blind in one of my eyes since birth (deformed optic nerve) and the disease hits the optic nerve pretty hard and I can't experience double vision due to the monovision.  My coordination and balance has been getting worse in the last few months, but I didn't think anything of it, just me not paying attention since I'm blind in one eye.

I work full time (40+ hours) and go to school full time (16 credit hours) and a full time wife and mom, so my plate is pretty full, this last semester and a 1/2 I have began to start having a horrible time concentrating on anything, work, home, school.  My memory is failing for even the most routine things. I keep telling coworkers I must have ADD.  It takes me quite a while to say what I want to say and for me to actually form the words.  Until my dr told me of this just this past week, I honestly thought I was losing it.  The plan is another MRI in 6 mos and then a spinal tap.  I have left a message for the dr (not in the office on Fridays) on the reason on waiting for 6 mos for the 2nd MRI.  I'm sure she'll get back with me, but I was wondering if this is the normal procedure or if I'm making more out of it?  I want to make sure that if this is what it is, it starts getting addressed since I don't like being discouraged on things that I used to like to do, school, work, etc..  I'm worried that if I struggle as much in my next semester as I did in the last I won't make it to my goal of my bachelors next year. 

Does the MS medicine address the concentration, coordination issue and memory issues or is just for the pain?  I'm not in any major pain, tired yes, but no real pain.  Thanks for the info!


theLight
New Member


Date Joined Dec 2006
Total Posts : 18
   Posted 12/17/2006 10:40 PM (GMT -6)   

Hey there Denda!!!!

Just wanted to reply to your situation and questions. I'm 24 years old, work 40 hours a week and am in a bachelors program as well although I don't have kids I understand having a lot on your plate. I was actually diagnosed late October 2005 so I'm still learning the ins and outs of MS myself.  October last year I had a severe headache one night but strangley enough it was a left side onset only. The next morning I woke up and the right side of my back, my right arm and right foot were numb which started the whole process for me.  Within two weeks I had taken X-rays, done a MRI and had a spinal tap as well. If you end doing a spinal tap I would schedule a blood patch just in case you get a leak in your spinal cord.  Let me say you've never had a headache like the one you get if your spinal fluid is leaking.  The spinal tap, if I remember right, helps diagnosis but what is tested in the fluid only helps if your currently having an exacerbation. From my experience MS is very difficult to diagnosis; its one of those things where alternatives are eliminated leaving MS as the only option.  MS is definitely something you want to catch early so that preventitive treatments can be started. 

I have been injecting Rebif since my diagnosis.  The injections don't reduce the discomfort from previous exacerbations just slows the process and reduces the frequency of exacerbations, hopefully. I haven't done a second MRI since my diagnosis because of my busy schedule plus I hate them because I'm very claustrophobic.

What usually makes me feel the worst is high stress?  Fatigue is something that is a major symptom of MS, but I've learned when I'm tired take a nap. Usually even a fifteen minute power nap helps me recover.  Also I experience what's called Lhermitte's Sign on random occassions.  Lhermitte's sign is when you extend your neck towards your chest which results in a tinglining down your back and extremities.
 
I'm happy to share anything you want to know that I can answer. 

Denda
Regular Member


Date Joined Jun 2006
Total Posts : 329
   Posted 12/18/2006 8:21 AM (GMT -6)   
Thanks for the info theLight. It helps. I don't have the Lhermitte's sign issues that I can tell. I wake up in the middle of the night with my arms tingling (falling asleep alot) but always thought that was just me sleeping weird. Who knows, I've been shaking off all kinds of stuff to my rt eye blindness, to stress, to this or that and now I may have an answer. I feel exhausted all the time and I just thought it was school and work. I just want to stop feeling lost and that's how I feel. Thanks again.
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