feels so quick...happy yet worried

Hi I'm new here.  I'm Ebby & I've been diagnosed w/ MS for a month now.  Unlike some who have been struggling with symptoms and/or trying to get a diagnosis, my journey is well-a rush one.  The problem is that as blessed as I feel that things did happen so fast, I can't help to feel worried.

I went to the ER in June of this year for a painful headache & dizziness.  I went on a Monday and did not leave until Wednesday.  During my visit I had a CAT scan & MRI and both showed enough concern for me to be referred to a neurologist.  My attending dr told me that I had enough brain damage as a stroke victim but I was physically and mentally fine-kind of puzzling.

I started seeing my neuro dr in August and after a month of tests, more MRIs, x-ray, etc I was told on September 15th that I had MS.  I have about 7 lesions in the brain and 3 on the neck and spine.  My spinal fluid test averaged 10 of whatever instead of 4.  This month I start the Gilenya pill (insurance as already accepted it) that I will take everyday for MS.

I feel so blessed that things have gone this quickly as I know alot of people struggle with getting a confirmation, but part of me is wondering how bad off is my brain.  I mean what does 10 lesion mean?  Why is my spinal fluid so high?  How have I gone so long w/o knowing I had MS?  If it wasn't for that headache from hell I would still be in the dark!  

[Lulu54]

Welcome to the club that no one wants to belong to - you are in good company here.  I probably went years with MS as well and didn't know it until my leg went numb.  

10 lesions means absolutely next to nothing.  What is important is the location of those lesions.  You can have many, may lesions and have few symptoms.  Or you can have just one lesion in the prime spot and have it create havoc in your body.

The o-bands in your spinal fluid is the same case - by itself it really doesn't mean that much.

You'll have to let us know how you do on Gilenya - it is so new that few of us here have made the switch from our injectables.

Welcome again and I hope to see you around here often.

be well,
Lulu

[HVAC]

Hello welcome. I bet you feel a little dismayed by all this. It can be scary and confusing. This whole thing still confuses me. I do not worry too much about the lesions on a MRI. The MRIs are basically a snap shot for the Doctors. They need them for diagnosis and later to see if a drug is slowing the progression. Sometimes the lesions do not correspond to symptoms.

The truth is no two case of MS are the same. Even Doctors do not exactly know what will happen to any of us. It all depends what nerve gets inflamed or damage. I am glad your Doctors are being so proactive.  As far as the spinal fluid it just measures inflammation. I had 12 0-bands in the CSF which sounds scary. All it did was sure up my diagnosis.

I went to a good talk this weekend. I am going to translate this as best I can, some of the more medical folks on the forum may explain it better medically.

Apparently MS effects our active and inactive immune systems. For some of us it effects one kind of T-cell and confuses into going after our nerves and in others it is another group of T-cell. It thinks the nerves are foreign invaders. This does not mean we have an over active immune or under active immune system, more of a confused immune system. In the future they will know which of us have problems with which T-cell. The drugs like Gilenya slow this process.

You do not have to understand it all right away. The truth is MS has been around for centuries and they are just getting a glimmer of what it is.

Alex

[desiremc21]

Thanks so much for the comforting information and welcoming me to the forum!  I start Gilenya on Nov 1st so I'll keep you all posted on it :)

[Needtoknow613]

@desiremc21

My diagnosis was rather quick as well.  I was diagnosed a year ago August.  I have been on Avonex for a year now.  I still don't understand how this disease works either.  My neuro exam is good, but I do have some numbness  on my right side and spells of fatigue.  Other than that, I am doing well.  Good luck to you. I hope Gilenya works well for you.  Keep us posted on how you like it.

Michelle

[Sparkysarah]

Hi Ebby

It feels to be strange to be welcoming you to the forum that none of really want to belong to, but I know when i joined 18 months ago, I found it really helpful to talk to others who understand.

Like you my dx was fairly quick and unexpected as I was being investigated for hearing loss. At the time I had few MS sx but looking back i know that I had episodes of severe fatigue for several years and I had just accepted that I was a busy person and that was the way my body was.

I think as I did not have many sx at the time of dx I found it difficult to accept that I had MS so all I can say is that allow yourself time to accept the new you and learn and find out as much as you can about it. I am on an oral drug trial similar to Gilenya (in UK) and am getting on fine with it. So I wish you well and hope that it helps to reduce future relapses.

Keep us posted how you get on and feel free to ask anything that crosses your mind as there lots of very well informed folks on this great forum.

with best wishes

Sarah x

[Sumanadevii]

I agree with Lulu.  The amount of lesions mean nothing.  The brain is a marvelous creature that can make new pathways.  You can have so many lesions yet so little damage.  Then you can have one tiny one that brings many problems.  

I think you are blessed to have found it now and can begin treatment to help slow the progression.  This is an awful club to belong to.  I find it hard to welcome anyone to it.  Yet you have landed on a board that is filled with people with knowledge and their own experiences which will be of help to you.

I too hope you will keep the board updated with your use of Gilenya.  According to my neuro it isn't much stronger than the shots (Rebif,etc.) but used more for convenience.  I would sure rather a pill than shot any day!!