Question about my history

[Zacksmomi]

I am trying to figure out when my MS started.  My Dr does not seem to think it is important and maybe it is not, but if I have had MS for 19 years I would like to know.

I have had problems that have been unexplained and gone away for quite some time now. I neer got answers, and since the prob went away, I gave up.
Now when I have a flare I am almost wheelchair bound and I get frustrated because I am newly dx'd, but if this started when I was 15 it makes more sense. Plus I am questioning the DMD's and if I need something different.

Ok so my question is, in 10th grade (I was 15) I lost my voice for 4 months maybe longer.  I was never sick, I just had a really strange voice that was not my own.  People would get annoyed and tell me to stop talking cuz I sounded so strange.  I honestly don't remember what the Drs said about it.  So is it possible that this was an MS attack way back then??

I have a little cold in my voice box area right now and I am talking all squeeky and wierd and it totally reminded me of that experience.  It is just one of several episodes as a teen but I thought it could be an MS issue.  Anyone ever have issues with their voice like that?

Thanks
D

[Zacksmomi]

Thanks for the replies.  I did in fact have mono over the winter that year.  High fever but I was better within 2 weeks. I don't think I lost my voice till later in the year,  but that makes sense now.

Alex -I have never had my o bands read.  My first MRI and series of flares that I had last year was obvious for MS so although I am glad I have never had the test, I also do not know the story there.

I have gone from Rebif to Betaseron over this year cuz the Rebif caused really bad site reactions so I had to change.  I have had 3 attacks since I started them.  One was a couple weeks, one about 6 weeks and this last one has been since the first part of November and I am finally  better this week.
I am gonna stick with the Beta for another year and see what changes.  I still have obvious attacks and relapses (unless steroids lessens sx's this much)
I just hate putting that poison in my body if it is not helping me.  Oh so hard to tell.  
Thanks for your input

Tarter - I actually just almost feel the need to use a chair (not quite there yet thank goodness), and I just feel that for someone dx'd just a year ago that severe flares that I am having are more like those of an experienced MSer.  I am better over the last couple days.  I was scared this time.  My walking and leg numbness started in Nov and was just getting worse and worse. I finally got steroids.
I know in my teens I had the voice issue for several months,  a wierd eye issue that lasted only a couple days, developed motion sickness overnight that has never gone away, developed stomach spasms in my early 20's.  None of these things ever came with any answers except the eye Dr told me I had an astigmatism.  Not sure if that could have cause the blurred vision and severe depth perception problem I developed overnight.  

Maybe I will start a history post.  

D

[tarter]

To Zacksmomi

Its an interesting post how many of us can work out when we first had an attack?
I keep going over times with these unexplained symtoms.

Has Alex was saying Mono is another problem some of us had in chidhood I had it really bad at the age of 10 the fatigue was simular to this MS flare.

Maybe we may have had a short flare and not realised it.
You say that you are using a wheelchair now are your symtoms getting worse or do you have good days?

Its really hard for you when you cannot do the things you normaly do.
Hope you see some improvement with the DMDs.

tarter  

[HVAC]

It could have been Mononucleosis. That happened to me with Mono. They think there may be a link between the EBV and MS or it could have been an attack.

All the Neurologists I see tell me mine goes back to childhood. How they know I can't say. My LP certainly points to having MS for a long time. You do not lose o bands and I had 12. which would not happen over night. I do not have attacks just a worsening of symptoms over time on a steady decline.

DMDs work on the beginning course of RRMS. You do not get more options but less as the disease progresses. With PPMS there are no treatments to slow progression and the insurance will not cover DMDs because they are only FDA approved for RRMS. I think my Neurologist knew I was PPMS but diagnosed RRMS so I could try a DMD.

When you exhaust the DMDs in RRMS your next option is Tysabri. For other forms of MS besides PPMS there are cancer drugs.

If the DMDs are working at all that is your best bet for slowing the progression.

Alex