Multiple Sclerosis (MS) Support Group

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kiakim 09/10/2011

I need some advice. I have not been diagnosed with MS yet. My neurologist said that I had an abnormal MRI and that she thinks it is MS but can not diagnose it alone based on the MRI. I had a visual test that monitors my brain activity (i forgot what the actual name is for the test) that came back normal. She told me that becaue this is the only problem I have had it is considered an isolated incident and they can not diagnose MS from this alone but it is enough of a concern that she is offering me to start medication to slow the progression down. She suggested I start Copaxone. I don't know what to do. I am looking for someone with some wisdom and experience with MS and neurologists to give me some advice. I just have no idea what to do...If you have any questions for me please ask. I am kind of all over the place right now so I don't even know if what I am typing makes sense.

lchoppel 09/10/2011

Early MS diagnosis is very important because your healthcare provider may want you to begin MS treatment at that time, rather than wait until the disease may have progressed.

Even if you have had only one flare-up or notice only a few signs of MS, it is still important to start therapy when you are first diagnosed. Very often, some symptoms of MS are "invisible." For example, lesions can form in your brain and spinal cord that may affect your ability to do certain things.

Starting therapy when you are first diagnosed may help reduce future physical disability so you can stay active and able longer.

MsRee 09/10/2011

Ichoppel is right. Early treatment is a great start. Even if it turns out that its not MS the drug isn't harmful therefore you won't cause any damage by taking this drug. Has your neuro said anything about a spinal tap or even going to the eye dr. Best of Luck

kiakim 09/10/2011

My Dr said that even if she did a spinal tap that it may not confirm MS still. I would rather not do that if we are gonna be in the same boat. Everyone says how hard it is to diagnose so am I just waiting for something else to happens. This one episode that I had took me out of work for a month....my neuro said maybe nothing else will happend or maybe it will progress and next time it will be worst. I guess its hard because I was not told " you have MS" I am considering taking the copaxone but I am also debating on waiting and getting another MRI in January to see if there are more lesions. Thanks for listening to me ramble!

MSKC 09/10/2011

My brain MRI was abnormal with many lesions, but negative spinal tap. My neuro said that she was not going to wait until possible MS progression to start me on treatment. She didn't want me to progress anymore and end up in a lot worse shape, so she immediately started me on Copaxone, but a round of IV steriods for 5 days first.

Sounds like to me that you have a good neuro that is really trying to help you, which is really good.

deleted_user 09/10/2011

I wish my doctors had started me out right away on the meds. Instead they waited and waited until more lesions showed up and that only took a couple of months. I would start the meds if I was you, I would do what ever I could to stop it from getting worse. I am still not on the drugs. I am hoping that the new doctors here will get off the pot and do something to help me. I wish you the best and please follow your doctors advice and start the meds!

kiakim 09/10/2011

I did 3 days of the IV steroids. I think it helped but I am still not myself. I am really tired all the time and I have to go back to work! Thank you for your responses. I guess I expect the Dr to either tell me I have MS or not. Apparently its not that cut and dry. Its actually very scary but I am happy I came across this site and get advice and info from people who deal with it.

deleted_user 09/10/2011

I am a person who has been working to keep my RRMS stable for many, many years. For the most part chosing to do so with the least amount of medicarions. Have never done the steroid drugs at , do not see a neurologist.

The one very inexpensive drug I use, (prepared a a liquid) is called
low dose natrexone. Online check ldninfo.org. This drug has been shown to keep MS from progressing. No needles & almost no side effects.

Anyone else out there heard of CCSVI & the connection with MS?
Had the test last year, 4 o5 veins blocked to some degree. Many people ar travelling around the world to get this treatment - (angioplasty) done. I wonder when Health Canada will start to fund for this, one day they will.

oleblue 09/11/2011

Hi kiakim,
I went to a neuro in Jan. and was given a bad DX and he said high blood pressure and blew me off. By the time I got to see the neuro I have now I had my first bad Flair and now have no feeling in my pinky and 2 toes and part of foot by the toes. The neuro I have now said probally the feeling is gone forever. If the last neuro had started me on my Rebif I probally would never had the flair and am afraid to ever have another, so I was happy to get on a med, maybe not a perfect med, but I would probally of taken anything offer'd to avoid anothr Flair but the choice is up to you and I hope you chose well
Good luck
Dave

kiakim 09/11/2011

Than you, I think I am going to call my neuro on Monday so I can get started on copaxone. I wish it was a pill or liquid instead of a shot though!

oleblue 09/11/2011

I have heard that the needle for Copaxone is smaller than Rebif, but my nurse said the Rebif is smaller, I would like to see both but learn how to do it both ways. The auto inject and how to self inject as there are differing opinions on whicth is best, and I myself like your choice to help yourself so Good Luck and may it slow the progression down
Take Care
Dave

deleted_user 09/11/2011

I understand about the shot thing. I already have to give myself two shots a day in the stomach, so I have been a bit worried about when I do see a new nuero that I will have another shot added to it. I am glad to hear that you are going to get started and I wish you the very best!

lchoppel 09/11/2011

I too am glad to hear that you decided to start a DMD. You may be slowing the progression of this disease down and preventing yourself from future disabilities. I wish I had started DMD when I first experienced MS signs. Maybe I wouldn't be so disabled now.

The copaxone shot is nothing, really small needle, alot like a diabetic needle. You will get use to shooting yourself every night in no time. If you have any questions about copaxone, feel free to post them here, there are many copaxone users on this site.

deleted_user 09/11/2011

I was just in the same boat as you are.. My first symptoms were a year ago and the doc didnt give me a firm dx either with just this one incident.. I did a week of iv steriods which eventually helped, nothing debilitating though so i pushed on a year later and i just had my second flare up with a positive mri with additional lesions.. I finally got the firm dx this past fri and as well im starting copaxone... Wish i could of started last year but i left it in the docs hands so if he says to start i would prob do so, i think they have an idea but just hard to get the affirmative dx without having 2 flares..hope this helps

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