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How I found out I have MS....

Nov 01, 2008 - 7 comments

Okay, here goes.  It was April 5th, 2008 on a daaaaaaark and storrrrrrrmy night.  No.  Just kidding.  It was actually morning and I had just woken up with my hair sticking up all over the place.  I remember the date because it was also my sister's birthday.  She understands why I didn't call her that day.  Anyway, I went to get out bed that morning and my right leg felt as though it were asleep but without the pins and needles feeling that usually accompanies a sleeping limb.  I thought it was weird but also thought it would go away.  Maybe once I was up and walking around it would feel better.  Well, it did NOT.  The more time passed the less I was able to use my right leg.  I get this bright idea sometime around 1 in the afternoon that I needed to go for a long walk to get my blood circulating and some fresh air in my lungs.  Surely this would make me feel better and wake my darn leg up.  Well, it also did NOT.  By the time my boyfriend and I made it the, just under two miles, down the trail to turn back I could barely use my right leg.  On the walk back I kept kicking my inside left ankle because I could only swing my right leg kind of out to the right and ahead of my left one in order to walk.  When we finally made it home I had to walk up the stairs left foot first on every step to the second floor.  Sunday came and went and I still had no mobility in my right leg.  

Monday I went to work and climbed the stairs left foot first to the third floor and I told my boss I had no idea what was going on but something was not right.  I said I was going to call my  Dr. and try to make an appointment for that day.  I called and they told me flat out they would not see me for this and to get my rear end to the ER immediately.  I think they thought I was having a stroke because of the questions they were asking me.  After blood work, MRI's, Xray's, CT scans, neurology exams and a urine sample they sent me home saying everything looked fine and they made me an appt. with my PC on the 11th that was changed to the 8th by my PC.  She told me they found a spot on my brain and it looked like it might be MS.   From there I had another MRI, this time with contrast that night at 8 at another ER.  On the 10th an appt. w/my neurologist who set me up for, 2 hrs. a day for 3 days of steroid infusions.  By the end of those I was swollen and red and it hurt if my skin touched anything.  Yuck.  

On the 17th I had a spinal tap which scared the living daylights out of me and on the 23rd the results of my spinal tap concluded that I have MS.  I'm sure the couple dozen lesions in my brain and spinal cord might have helped in that determination.  

The years before the diagnosis were filled with odd instances that my neurologist agrees should have been caught.  A trip to the ER about 10 years ago because my right eye would shake and was extremely out of focus.  It would make me very dizzy and have me feeling nauseous.  It was scary to drive because I couldn't see all that well and what I could see was moving back and forth very rapidly.  After a multitude of tests they couldn't find anything wrong and I was sent home.  It lasted about 3 weeks or so and makes an appearance every now and then.  

Mystery pains that have progressively gotten worse over the years that no Dr. could ever blame on anything......except on stress and the need for a vacation.  Stabbing, buring, tingling, aching and sometimes shocking pains for no apparent reason and with no rhyme or reason.  

Dozens of doctors appts. and always the same basic answers.  I still think that had I not lost the use of my leg I would still be ignoring all of my body's warning signs because I thought it was all in my pun intended.  

Now I can pretty much walk normal as long as I am heading in a straight line and taking my time.  I can only lift my leg about 6 inched off the ground but it's a whole lot better than it was in April.  Stairs are and issue as are any corners I take or obstacles I have to maneuver around.  I tip now and then and fall a couple times a week.  Usually there is something around to catch myself on.

I twitch a lot.  I think they must be muscle spasms but I'm not sure what's causing them.  It can be embarrassing at times.  The good thing is it happens most of the time when I'm trying to relax and unwind so I would be at home.  It's a real bummer if I have a coffee in my hand.  

Anyway, here is my story to the best of my recollection.  I'm sure I missed a whole bunch but I don't want to be typing forever.  

Take care everyone and be well!

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572651 tn?1531002957
by Lulu54, Nov 01, 2008
Thanks for sharing all of that with us.  I am amazed at how many of us start off with a leg that doesn't feel or work right and even more so the large number of people who say it started with their right leg.  I'm wondering are you on any dmd's or have you had any pt?   It sounds like your dx came about as fast as possible with all the extra teststhey have to run.  I had a similar experience that fast  tracked me to the confirmed MS category.

Thanks again for sharing this - we learn so much from each other's experiences.

My best, Lulu

664710 tn?1226933196
by chmagu76, Nov 02, 2008
I'm still new at this so you'll have to forgive me but what is dmd's and pt?  I think it happened that fast because I had absolutely no use of my right leg.  I have done a lot of reading on the subject and I read on one of the many medical sites that people who start off having problems with their legs or eyes have an 80% chance of developing secondary progressive MS that much fast than people who's first symptoms were something else.  Do you think that's true?  I wonder.  

Oh is physical therapy??  If it is, I have not.  I wonder if that will even help because it's not muscular.  If I have damaged nerves I wonder what the therapy will accomplish but draining my wallet that much more.  

We do learn from each other and that's why I feel so much better about what's going on with me now that I know I can talk to people who are going through similiar things.  It's such a relief!!

Take care,

572651 tn?1531002957
by Lulu54, Nov 02, 2008
I'm sorry - very rude of me to talk in code when I'm not sure if you are bilingual yet! LOL

PT = physcial therapy
DMD = disease modifying drug (rebif, copaxone, etc)
DX'd = diagnosed
SX= symptoms - don't ask neither one contains an x  but it is a univeral abbreviatin for tired fingers

Be well and ask lots of questions,

572651 tn?1531002957
by Lulu54, Nov 02, 2008
wre have a pretty lively discussion going on the progression of MS at

you might want to read the varied opinions there.  For my self, it may be predicatable but I'm trying not to let it overwhelm me with something that is only a possibility.  Why waste today filling it with worry?

432376 tn?1266261338
by shelly360, Nov 03, 2008
Thanks for sharing your story. I haven't been dx'd yet-still in the land of undiagnosed symptoms, but I can relate to the numbness, the feeling that something is asleep, double vision in one eye that makes me nauseaous too,  the random pains (My daughter and I call 'em "zaps"-she is 22 and was dx'd with MS 5 years ago. That's when a light went on for me. When she started talking about how her body was feeling, I was like "Hey! Wait a minute.....I thought lots of these things were 'normal' or would go away, and they do, sort of ,sometimes), the feeling of warm spots like someone holding a hairdryer to my leg or arm, or the burning spots on my face, neck and body, or the sudden onset of weird pain in a joint that will last for an hour or so then disappear. I wish I had a nickle for every doc. that rolled his/her eyes at me. The medical system here is slow. And because I don't seem to have anything really, really bad going on (and I am not a complainer unless things are totally unbearable), I am on a slow wait list for an MRI. I was referred in July and still don't even have an appointment. Oh well, patience is a virtue.
Do you ever have problems typing? I have days where I think my fingers are mixed up with each other, as I will type almost opposite. weird. I think it is fascinating and uplifting to read people's stories.
I hope you are having a nice day.

147426 tn?1317269232
by Quixotic1, Nov 03, 2008
Wow, I read all of these intently.  Christina, thanks for putting your story in your journal.  It really helps everyone who wants to talk to you.  They can just check your journal, get the gist of how you got here and move on the to the new topic.  Yes, a lot of things were missed in your past.  That is so very common.  Many of us rationalize that we are getting old (???50 isn't old, is it??)  and the doctors we see all all too quick to ignore stuff in women - and often in men.

About the worse/faster progression in people who present with motor (usually legs) and eyes.  Sort of.  If they present with demyelination of the eye (optic) nerve, this is generally a sign of a more benign course.  But, problems with the "movement" of the eyes as in double vision or eye jerking (nystagmus) is a often a sign of a worse course.

Shelly - you sound soooo suspicious for MS.  I can't believe you are 5 months out and do not have the appointment for the MRI yet.  Do you call periodically to make sure you have not fallen off the list or have you assured that you are on the list to be put on the list?  Patience may be a virtue and you may not be in a great hurry to know this, but early treatment is to your benefit. Would you write up your story in your journal so we all can find it?  Most people will miss it here.


664710 tn?1226933196
by chmagu76, Nov 04, 2008
Shell- Sometimes I do have problems writing and typing but I don't know if it's the MS or not.  After a while my fingers start feeling like they are bigger than they are supposed to be.  Swollen and tingly feeling almost like it takes major effort to write the next word or type the next sentence.  When it gets really bad, at work for example, when I have to write and type and there are no exuses, these feelings will go up to my shoulders.  It's really weird.  I wish I had something to compare it to.

Quix-Thanks for chatting with me.  I feel more and more informed about MS and what it's doing to my body.  It's really nice to have people to talk to abuot this.

Thanks everyone and take care

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