Feeling Down

[insomniac]

In 2000 I had double vision that lasted several months, but did recover, and dx with MS. I had one other major attack the following year which (severe vertigo) that went away after a few months.

Fast forward to 2015, I've been pretty much symptom free but a few days ago my vertigo returned and I am awaiting a neuro appt. I always figured MS comes and goes but I read somewhere that after 15 years about half of patients with RRMS progress to SPMS which has me scared, because now I have vertigo, I'm worried it won't resolve and will just go downhill. Then again, I'm not sure if that 15 year period means many many attacks on the CNS which leads to SPMS. I've only had 3 major attacks in 15 years so am not sure if I'm going to get SPMS or not. I guess I'll have to speak to my neuro when I can but does anyone else have these thoughts?

Also, in SPMS, is that where old symptoms you had at the start return and get worse or does it mean ANYWHERE in the CNS can be attacked, even places you never had damage before?

[poohb3ar]

hi insomniac!
yes, i've worried several times with relapses that i was going to be permanently stuck in whatever relapse sxs were going on at the time.
i was completely paralyzed on my left side for months in 2010- by end of summer was walking again. now i hardly need my cane and can even walk several blocks in my neighborhood!

2 yrs later, my left vocal cord shrunk and i couldn't talk for 6 mos. , pure agony!!! after therapy and surgery, i talk normally and am even able to sing soprano again!

some of my other relapses have left me with less sensation.
i was dxd in 2002, but he back dated it about 10 more years, so it's been over 20 yrs since i've had MS. i try not to read too much of that negative stuff & predictions on how MS will progress because everyone is different- so i just don't dwell on what i can't control.

i've had a couple of the vertigo relapses, mine usually behaves with daily meds. but over all, i'm finally learning that MS is always changing and not to let the MonSter win.
fight like crazy whenever your sxs act up and do all you can to get back to baseline!

praying that you'll be feeling better soon. i know vertigo is not a fun ride, though you may feel like you're on a roller coaster!

take care & God bless ya!

[KatieAgain]

Insomniac

You will have to determine if your Vertigo is Central or Peripheral. If it is Central, it is caused by a MS Lesion. It can be controlled with Low-Dose Valium. And after the first week or so you will not feel groggy.

Peripheral...off to Vestibular Therapy you must go and they will teach you some exercises that will help.

As far as SPMS stats...ignore them. I have learned stats don't mean too much in the Land of MS. I have had RRMS since 1999. Have had more major flares than I have fingers. I am still smack in the middle of RRMS.

Get the dizziness under control with the help of you neuro and you will be feeling better soon.

[pennstater]

Hi Insomniac.

Totally agree with Katie. Diagnosed 9 years, MS at least 22 years. I am still RRMS. I did torture myself for awhile wondering about SPMS and causing anxiety. While I have progressed some, I am doing OK. Also keep in mind the stats have not been updated to reflect impact of some DMTs. There is not enough history.

As for my understanding of MS, Some things that are supposed to indicate a more favorable disease course: first symptom ON or vertigo, longer relapse from 1st to second relapse, less frequent relapses, full recovery after relapses.

As for SPMS, I think progression can include "new" symptoms and not limited to prior symptoms. But I could be wrong.

I hope you feel better soon and the vertigo resolves. It is not fun to have.

[insomniac]

Thanks for the responses guys.

Pennstater/Kathy, yes I get confused with the progression aspect. Because if MS progresses, I'm assuming its progressing as a whole (attacking anywhere) as opposed to just attacking old areas of damage. Not sure if I'm right though, anyone?

It's hard though because what I have read on the 'net is pretty vague in regards to how SPMS progresses exactly, maybe because MS is so confusing as an illness.

[Diamond57]

Drugs????

To all who posted on this thread......are you on a DMT?????

Thanks.................
Diamond

[pennstater]

Yes, DMT since 2006. Avonex 1.5 years, Rebif 5 years, Tysabri, closing in on 3 years. Still JCV-, so here is hoping I stay that way.

[poohb3ar]

nope to drugs!

i took avonex faithfully for 5 yrs despite being flu sick all day sat (next day) with relapses still occurring every 9-10 mos.
body started REALLY rejecting it.
neuro switched me to copaxone. that lasted about 3 yrs. until ins. upped the price to more than what i was receiving in SSDI checks!

that's been about 3 yrs ago. even on copaxone i was still having severe yearly relapses (paralysis was one of them)

happy to say that even though off DMDs, i'm actually relapsing less. went 18 mos. at one stretch!

of course, neuros have no way of predicting if you'd actually be worse off if you'd (i'd) never taken the drugs, but at times, i would give anything to get those sats. back. i'd have full blown flu. if not throwing up, wasn't able to eat or get out.
my girls were still home and i missed too much because of the MonSter.
hind sight is always better, oh well.
we still had/ have wonderful relationships with each other!

be interesting to see who else is/ isn't on them.

good question!

take care & God bless ya!