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Avatar universal

How long will it last?

3 weeks ago symptoms started with numbness/tingling in both feet then spread up legs. Sometimes it is burning and very painful. I also get the fuzzy head (like someone closes a curtain in my brain) and headaches, weird feeling in my neck and heavy arms. I'm unable to stand for long periods, my legs bother me so much and my balance feels all off.

My MRI showed an area of demyelating activity in the brain. My spinal fluid showed abnormal oligoclonal banding. Right now they are calling this a clinically isolated syndrome that may or may not be MS. I'd like to be optimistic, but it is hard given how crappy I feel right now.

So ... how long do these periods last? I can find lots about "exacerbations" but they never really say how long they last. Just when I feel a little bit better, the next day is bad again. I would love to hear from some of you folks who have been through this. I'm feeling very lost and alone right now.
5 Responses
198419 tn?1360245956
Hi P &N,

Welcome to the forum.  I'm sorry that you've been dx'd w/CIS, however, it's best you know what you are dealing with.  

Everyone is different.  But then, oftentimes, MSers have varying symptoms that are very similiar to others, but the specifics may vary - if that makes.  So, it's kind of a mixed bag.  

As far as the attack, it's unknown, as they vary too.  Mine, lasted for a little over 3 months, however, now, I have residual issues and symptoms that are similiar to many on this forum.  But, the 3 mnths problem was completely different than from what I deal w/now from day to day.

I'm sure others will chime in as soon as they can, and I hope you have many days of feeling better.

Sounds to me that they did not diagnosis you as definite, is this true? With CIS, I would think they would of suggested starting DMT's.

Be well,
SL
Avatar universal
Hi, and welcome.

I wish there were a straight answer for this, but not so. My symptoms have lasted 6 months or so, then gradually disappeared, only to return about a year later. Yours could last weeks or months. Then next round could be entirely different, in symptoms and duration. I'm sorry I can't say something more upbeat, but hang in there.

ess
195469 tn?1388326488
Love that forum name...it certainly fits what most of us go through on a daily basis.

Please don't feel lost and alone.  We are here with you.  Going through the same things that you experience.  Some of us more, some of us less.  As anything that seems wrong Neurologically, symptoms can last for a long time or end as quickly as they started.

No one can say how long your symptoms will last.  The great thing about what you are doing about your worry, is expressing your feelings here, to us.  People that go through this with you.  That understand perfectly what it feels like.  Sometimes you just want to pull you hair out.  This tingling, this numbness, this pain....oh god, sometimes I just want ot scream.  Don't you?

What helps me through times such as these is to know that I am never alone.  As long as there is this forum and all these "Angels with Invisible Wings, " (as I call them) then you will never go through any of this alone.....  So vent away.  We are here to listen and offer a soft shoulder.

Welcome.

Heather
Avatar universal
Thanks everyone who responded. I'm kind of a control freak, so these symptoms being beyond my control and not knowing how long they will last is driving me nuts. I have an appt with dx at OHSU after Thanksgiving, and they want me to have a second MRI in early Dec. They have started me on Gabapentin (Neurontin?) and it does make the pain better, but the fuzzy head is still there and I feel so stoned on it that I can't drive. So I am taking it just at night ... I would rather feel bad but be able to leave the house! With only 1 lesion at this point, my dx thought I should wait on other meds.

I DO need somewhere to vent ... I scream inside my head all the time! But then other times I just want to cry. I run my own retail business and I am unable to be there, so it is suffering. I have a fabulous husband and 6 yr old son who doesn't understand why mommy's legs hurt. Just moved into a split level house and wonder if we will have to sell and move again because somedays I can barely make it up and down the stairs. Then I look at this forum and see all of you who deal with MS on a daily basis for years and think I am just whining over my month of problems and no concrete diagnosis yet. So, thanks for welcoming me and offering your support and listening to my rant.
Jami
230625 tn?1216764664
Hi and welcome to the forum.  I'm sorry you're going through this. :(

I don't have an answer for you as my symptoms have appeared and have stuck around since they started (over a year for some of those symptoms).  I am also currently undiagnosed (2 brain lesions, but every other test has been "normal").

I do know what you mean about the "uncertainty".  I have 4 children and it just tears me up not knowing how I'll be from one day and/or one minute to the next.  

It does seem like your neuro is moving very quickly.   I hope that he/she can have an answer for you soon.

Please feel free to come here and vent and scream when you need to!   The people on this board are awesome and so supportive!  A nice little "online family"!  :)

Take care!  Pat :)
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