Just Diagnosed as an isolated case of MS

[togomalik]

I was diagnosed with an isolated case with MS last week because I only have one lesion on my brain and this is my first attack.  They said I have a 50/50 chance of never having another attach or episode. Has anyone heard of that?  I am new to all of this I have been in this attack for six weeks now.  I constantly feel like I am swaying(but everyone says I am not) and my left side is tingly but that comes and goes.  My head feels really weird.  Anyway I am starting balance therapy so hopefully that will help with the swaying.  Has anyone else had the swaying?  It is driving me nuts?  
Another question is anyone on any anxiety medicine?  I wanted to try something natural?  Any ideas??

[cainer]

start your meds. as soon as u  can!!  you have a great dr. so dont wait till  or if something else happens. keep us informed- wish u the best!!  tick    (check out what lulu  said  she knows her stuff!!  )

[togomalik]

I really appreciate your advice.  I go to my doctor on Monday so I am going to talk to her about the medicine.  They did the the five days of IV steroids and five days of predisone and nothing has worked.  I guess I don't know much about MS.  This is how it started.  On a Saturday I went paralyzed in my whole left side except my face twice (the first time lasted about 30 seconds, the second time lasted about 1 1/2 hrs) then I was normal other than my arm and leg were alittle heavy until Monday when I was driving to work thats when the tingling started and didn't stop.  I went Wednesday for an MRI and they found the lesion on the right side of my brain.  Well of course I freaked out and got super stressed and then the symptoms got worse and worse and I started swaying and my balance was off.  And it hasn't went away.  If I am stressed one day the next day I can barely walk.  Is this all normal?  Do you think the swaying is probley from stress and that it will stop?  
Its just weird that I was fine for two days and then the tingling and stuff started after that.  
Thanks for your help and advice everyone because I am new to all of this so I really don't know much about MS at all.

[Heather3418]

I don't know why these doctor's tell someone that is in the middle of an attack, and their first attack to boot; that they feel they have 'Clinically Isolated Syndrome.'

Of course, sweetheart, I DO hope that you never have another attack.  Wouldn't that be a true blessing?  Since CIS is so rare, especially with a first attack going on six weeks now, I do think you have a possibilitiy of having another attack, hopefully, FAR into the future.

You should be offered one of the DMD's to hopefully prevent you from having another attack.  We may have no outward signs of any symptoms, but after dealing with this disease for 14 years, I can tell you positively, that MS is still working in the background.  It can be silent and still be doing it's dirty work.  This is the reason that you need to find a doctor that will put you on a DMD right now.  It's very important at this stage of the disease, to get started on something that can help slow future attacks, stop them all together or help with keeping loss of brain volume under control.  The DMD's are all that we have to fight with.

The earlier the DMD's are started in the beginning course of this disease, the better your chances of preventing further damage that isn't always "felt" or "seen" on MRI....until it's too late to correct.  In many of us, the DMD's have stopped our frequent attacks and have actually healed some of our lesions or even prevented brain volume loss.  Once an area is repeatedly damaged, the nerve fibers die.  Once they are lost, they are lost forever.

I am one person with MS that does not believe in the term CIS and does not believe in what is called "Benign MS."  I truly believe that MS marches on.

We care about you dearheart and just want to see you get the best treatment possible, while you are still so early in this process.  It is VITAL to your future.  That's my firm belief.

Please have a talk with your doctor about putting you on a DMD and if you are still having an attack after these 6 weeks, that he possibly might start you on some IV steroids,(usually Solumedrol) to see if he can get this attack stopped.  The longer they let this attack continue, without treatment, the more damage may be going on in your brain.

I hope that I haven't scared you by what I have said.  There is so much more new information about MS, that says that treatment should be started as soon as possible.  I do hope and pray that this indeed is a one time attack for you.  Knowing MS and what it is capable of doing, the possibility of having another attack, is a very real possibility.

If your present doctor was up to date on his MS literature and guidelines, he would know that you should be on a disease modifying drug, NOW.

All the Best, Big Forum Hugs and lots of good thoughts,
Heather
One of the old veterans of the Forum

[schnauzerlady257]

So far I have only had one attack and one lesion as well, so it does happen.  I am sure that I will end up on meds at some point soon, but I'm trying to wait for my specialist visit for that.  I know how you feel...one one hand we may never have another attack, but we still need to be proactive and medicate as if we will.  It's frustrating in a way.

[dideann]

My husband was diagnosed with MS in 2003. He had a lesion on his brain that was causing double vision and a couple of lesions on his spine.  He started out on rebif but his body didnt tolerate that well. He is now on Copaxane and has been for 6 years. He is a firefighter who has been back to work for  5 years now.  His doctor diagnosed him in just a couple of months we were very lucky to have found the doctor we did. Get on the meds asap that is very important with MS.

[HVAC]

I have a strange MS as well. I have had a constant progression with nothing too dramatic that has had to be treated.  It took me over two years for a diagnosis and before they would give me Copaxone. I sure can tell a difference over those two years. I would have loved to start Copaxone sooner.

Alex

[togomalik]

Yes that would be great if I could get some references.  Because I am worried about not being on any medication and end up that it was a mistake not getting on it.  Have you heard of many people only have one attack??  

Thanks for your help!!  

[Lulu54]

wrong, wrong, wrong!  The FDA has approved the use of several drugs, including Copaxone and Rebif for cases of CIS.  It is well proven that the earlier you begin treating MS, the better the end result will be.

If you need the references to print out and take to your doctor, please let us know.  

A DX of CIS is enough to begin treatment.

stay well,
Lulu

[togomalik]

Well I am only diagnosed with CIS which is an isolated case.  I can't get on any sort of medicine or anything unless I have another episode.  I went to the Mayo Clinic in Minnesota.  They were very good there.  I know I am feeling very blessed that I have a chance of never having another episode I just didn't know that it could happen.  
I had the one lesion and 8 bands in my spinal fluid.  Hopefully it is a one time deal and that is why I am having a hard time with this episode or attack (I'm not sure what they are called) :)

[cainer]

  well  i imagine most of us r  on anxiety meds..  i just had 2  reply!! u- have 1  lession  wow  alot of us went through *******  getting diagnoised!!  whos your nero??  he  or she is  excellent!!  had 2  tell you!!   sorry that u  have it.      hope it stops!    tick

[wadeheather]

I feel like I am swaying a lot, usually only when sitting.  I'm not sure if anyone notices it or not. I am undx.

[togomalik]

How long has yours been going on??  Have you tried balance therapy for it?

[msms63]

I'm not diagnosed but feeling of swaying or rocking is a complaint of mine, also...It drives me nuts! If Im sitting I think Im rocking, but Im not.