Quix- vertigo

[angela5674]

This vertigo is starting to worry me.  It's been 3 weeks today since it's started.  Some days are better than others, but there's not been 1 day that it hasn't been there in some form, even after my solu-medrol treatment.

Isn't 3 weeks a long time to have it without it going away?  I know you were disabled due to this, and I guess I'm scared of this happening to me.  How did you know this was the case with you?  

I also feel scared that I might have PPMS.  My symptoms (left side muscle weakness, cognitive issues, numbness and tingling, etc) have never gone away.  And then I have this new exacerbation within the past 3 weeks that has brought on more severe spacisity, nerve pain (burning, quick stabbing pains that feel like knife jabs or something), facial pain...and this MS hug.  My torso was in so much pain today that I couldn't even stand up straight much of the time.

Would any of this have anything to do with the dr finding 10 oligo bands in my CSF?  I remember you saying something at that time about it being increased inflamation or something, but could this be an indication of a more progressive form of MS.

Thanks for any light you can shed on my worries.

Angela

[angela5674]

I just realized I didn't answer some of your questions!  About the mental fatigue.  Yes, very much so.  It was one of the things that was frustrating me at work when I did try to go back for that one week.  I couldn't think straight, I couldn't remember something one of the teenagers said to me, even though they just said it.  I couldn't concentrate in meetings.  It's gotten better since I've been off work, probably because I'm not required to use my brain as much.  My husband just said to me last night though "Why does it take you so long to get a sentence out?"  He's noticed a decline on my cognitive abilities.  I went through my whole Bachelor's and Master's program, graduating in 2006 with a 4.0GPA.  Trust me when I say I'm not bragging...just wanted to give an idea of where I was compared to where I am.  It's quite depressing.  I mean, I still feel "smart" as long as I'm not pressed to regurgitate information on the spur of the moment.  I feel like I look stupid when I can't think of simple words, or when my brain becomes a marshmallow in the middle of a sentence.

I'm on Neurontin for nerve pain.  From what I understand, it's a fairly high dose, so maybe I need to be on something else.  I started on Lyrica, but my insurance only paid half and we couldnt' afford it with all the other medical bills.

I'm not sure when my first symptom was, to be honest with you.  My fingertips and arm went numb at the end of June, and that's when I realized something was REALLY wrong.  However, looking back, I realize my fingertips had gone numb off and on for several years.  The feeling always came back, though, so I didnt' think much of it.  Also, looking back, I remember getting extremely fatigued at school to the point of falling asleep in classes.  Again, didn't think much of it.  Just thought it was because I was a single mom trying to go to college full time and also work at an internship.  Since June, though, the symptoms haven't stopped.  They've stayed static or gotten worse.  

Hope this answers your questions (plus some I'm sure)
Angela

[angela5674]

Interesting that yours started from concussions...I fell at work December 6, slamming the back of my head on cement stairs and requiring 6 staples.  I wonder if this could have anything to do with it.

I have changed neuros to a closer one and I don't see her until the 25th.  I'm hoping she will run some more MRI's due to my recent exacerbation.  I hear she's very thorough and runs "every test imaginable" so I'm sure she will.  If not, I will request it myself.

Angela

[Quixotic1]

Both your questions are ones we see frequently and I think I can reassure you some,

First, my vertigo was started by a series of concussions.  I saw one of the world's formost experts on peripheral vertigo and his testing proved conclusively that my problems were from the inner ear.  But then the problem spread to the other ear and it was clear that it was an autoimmune inner ear disease. It had nothing to do with the MS and my current MS neuro agrees.  I was just really unlucky to have it and then MS.

Vertigo associated with MS is very common and can last as long as it lasts.  But, I always recommend having a VNG to see if there is a peripheral cause, like BPPV, that can be treated.  It is very hard to live with vertigo, I know.  When I applied for disability I was approved in less than a month.  It's on the SSA's list of disabling conditions.  It causes such severe mental fatigue.  Do you have that?

The things you tell me lead me to think you DO NOT have PPMS.  Interestingly enough PPMS is associated with "fewer" signs of inflammation than RRMS.  The lesions are often fewer and smaller, and the spinal fluid is more often negative for O-bands.  One study I read said than in PPMS the spinal fluid was negative for O-Bands in 40% to 45%.  The damage in PPMS seems to have more to do with direct cell (nerve cell) "degeneration" than with attacks on the myelin and subsequent inflammation.  Also the fact that you seem to be having an exacerbation also goes against PPMS.  In PPMS there is a very slow, insidious deterioration without sudden flair-ups.  I hope that is reassuring.

However, I don't know enough about all this and the meaning of the very high O-Bands to say much else.  Like whether this could be SPMS or PRMS.  Sorry.

I'm really sorry you're having so much pain.  Have you started any meds for nerve pain?  I started Tegretol about a month ago and now my face pain is under control.  Beyond that I have not had much pain with my MS, just progressive weakness and spasticity. Maybe others have read more about the significance of large numbers of O-Bands at diagnosis.

Question - How long ago were your first MS symptoms?

Quix