I can't tell you whether or not you should start meds since I was diagnosed after my first symptoms presented themselves.

However, what I would like to tell you is to go and buy life insurance. The second you are diagnosed with MS or with a clinically isolated episode, you will have an extremely hard time or impossible time getting it. As soon as you have a full diagnosis of MS you are uninsurable.

I'm sorry you're around here and may have MS, but getting insurance is something you really really need to consider.

If your specialist is sure of a diagnosis, he should put you on meds.
If you have bright spots AND symptoms, I can't see how you can possibly get more clinical! That is very "old school" thinking.

JMHO

He did tell me I have CIS. But in order to DX I have to have more symptoms that last more than 48 hours. He says the way he diagnoses is clinical???

I would definitely get a second opinion if I were you. I had one major attack and ongoing symptoms, such as spasticity. That was clinical enough for my neuro.Depending on where your lesions are is quite important as well. If they are on the brainstem you don't want to wait for a severe attack.

Hugs and Blessings

Just a little confused...in your post you say that you decided not to start treatment. right away...was the recommendation that you start meds for MS without an actual dx?

I woud get another opinion, and I would get all my insurance affairs in order as Smathie mentioned.

But I would not start any meds until I had a dx, this same thing happened to me, I had positive for many symptoms, positive for MS LP, postive for MS MRIs, and a specialist was not ready to make dx, but ready to put me on meds...so I went back to my neuro who sent me to the specialist, she read the repost, did some other tests and she made the dx and moved forward.

Yeah he gave me the option to start meds before DX. They have been doing studies and starting people out on meds with CIS will prolong relapse's to give them the definite DX. I'm new at this I just go off what I have read and what the Docs say. I have been seeing a MS specialist. He came highly recommended from a great source he has lots of DR of the year awards on the wall and has worked with MS patients for 30 plus years. Maybe he is just old school?

Sorry, again I am confused...meds are given to prolong the time between relapses and therefore prolong the dx process? That does not sound ike anything I have heard of, maybe I am not understanding what you are saying. But again, in terms of many things, once you go on the meds, you are being treated for MS. I am unclear why anyone would take a med for anything if nobody is willing to dx the reason for that med...but maybe I am not understanding what you are saying..if that is the case, I really apologize.

nikki, my dr recently gave a presentation about new medications and controversial ways to treat "possible MS". She said that some drs will treat patients that are displaying the symptoms of MS but just short of a clinical diagnosis. She said that the thought process is similar to hiv/aids. She said that drs will not make a patient go into full blown aids before they treat them and many drs are now starting to treat "possible MS" with the same mindset that they use to treat HIV...that if all the signs are there then maybe they can prevent the disease from progressing into full blown MS.

I am not familiar with the topic outside of what she spoke of. Google can probably tell you more.

There are diagnosing stages.
First it is 'probable MS' then it becomes 'definite MS' and there are multiple ways it can become definite MS. There is 'Clinically definite MS' or 'Laboratory Definite MS'.

So what you say and your doc says makes total sense to me. I have posted this same explanation before. And you have quite a big decision and I believe going to another doc is just doc shopping. Because either way is correct: If a doc begins meds in the probable or definite stage. If the doc diagnosis clinically or by laboratory results. Both are correct & its just doc shopping to find one that says what you want to be said. Seems stupid to me. If you know what your shopping for you already made the decision & this doc sounds willing to take your views into his treatment plan. He sounds like a good doc.

Its not him, it would be you doc shopping until you found one that said what you wanted to hear. Waste of your time. As I read your post, the buck stops with you!!!! Not your doc.

I had an MRI that immediately diagnosed me, fulfilled every criteria for "laboratory definite MS" + had half ring enhancing lesions with the open part of the ring directed toward the grey matter--that is something that can only be caused by MS. White spots can be caused by many things but open ring enhancing lesions with thew open part directed to the grey matter, are only from MS.

Most don't have them. I did. There was no doubt it was MS (and I had multiple brain stem lesions lesions too alo0ng with a black hole) The report just described extensive white matter damage consistent with MS. No other possible causes given in the report. Just MS.Those open ring enhancing lesion pretty much made it a single possibility.

And my verbal history had multiple episode that cleared up, most I didn't see a doc about, some I did and was diagnosed with something else.

I meet 'laboratory definite MS' and by my verbal history 'clinically definite MS' too. Within 2 hours of MS being investigated..

Its controversial whether to start meds in the 'probable MS' stage or wait for definite. Like smathie I was immediately definite once MS was a investigated.--actually when I applied for SSDI I had to get a copy of my records. The ER doc diagnosed definite MS. The next morning I saw my new neuro. He diagnosed probable MS that morning. The next time I saw him he changed it to definite. So the probable to definite is THE PROCEDURE for diagnosing MS.

The neuro recommended I start betaseron right away. I refused and asked to delay it by 6 months, to get something finished first. Paperwork caused the 6 months to turn to 8 months.

To tell you the truth, I was kind of glad I delayed. During that time I had more clinical relapses. It no longer was me verbally describing my history and that MRI.It was both Laboratory definite MS and Clinically definite MS BY THEIR OBSERVATIONS!!

My doc told me once what happened in the past could have been MS causing it, but it might not have been....there is absolutely no way to diagnose the past in the present we will never know now what it was then.

So actually I'm glad I waited those 8 months, because then I was certain I had MS and I needed Meds for it.
I liked that certainty.

Ignoring it and not monitoring it - I would definitely advise against doing that!!. If the doc advises you strongly to start a med--perhaps because of the amount of change, or location of change--- I would advise to do that. BIG TIME!!!.

But if he tells you it is still your decision, I would ask if I could be monitored until I was certain I needed MS meds. Like are yearly MRI's a possibility too?

I wouldn't leave without some kind of plan for future treatment or monitoring. Letting this go year(s) would be bad. Letting it go for a year would not be that big of an issue.

Depending on what faey said about what this MRI shows.
When I asked to delay meds for 6 months, I had read this article, it was the main reason I asked for the delay.

Delaying a year or 2 is not the same as ignoring it for a decade. And what smatie2 said get your insurance straightened out--actually it may be too late already? As you have a diagnosis of Probable MS. When I lost health insurance and had to go on the individual market, they asked what I had seen docs for in the past---i got no diagnosis, but the insurance wanted to know my reason for the doc visit--not just the diagnosis. Even when the doc advise was just to eat healthier.

Here is the article, from 2005 by Mayo. I was glad I was certain past this point when I started meds. I know I a 2nd guess my decisions..I'm glad I avoided that in the future. Note IT DOESN'T SAY IGNORE, it promotes a possible 3rd way of 'NONITORING'.

http://www.msneighborhood.com/content/in_the_news/archive_2209.aspx

This doc is right & if you find a doc with opposite advice that doc is right too. Its controversial whether to start med at the probable MS stage.

You have a right to your medical records too. I get all my MRI's on a CD and I ask for a copy of the written report too. The CD I ask for at the MRI center and the written report I have to get at the doc office as he has to see the written report before I do. If you go with monitoring, I'd get those reports if I were you. The doc seems rather flexible and not at all threatened by scrutiny..... so he should not mind if you ask for a copy at you appointment.

McDonald MS diagnosing Criteria:

http://www.mult-sclerosis.org/DiagnosticCriteria.html

reply #8

Thanks, Faey. I had heard a littkle about this, I just didn't realize it was this kind of situation the poster was talking about...sorry poster! My mind went right to the CRABs.

Thanks Faey & NNYL1 for explaining this!!! I was having a hard time:) Thanks for all your input and knowledge. I will see what he has to say and go from there.

Respectfully, I disagree. I do not think a second opinion can be termed as "doctor shopping. As an RN, I have seen too many patients
go undiagnosed with multiple issues, even cancer, by relying on so called "experts". My friend saw a renowned specialist at Sloan Kettering, and he told her to go home and prepare to die. I told her this is BS. Get another opinion. She did, and now 10 years later she is still alive and on proper treatment.

Well good news MRI has not changed. And neck MRI was normal. Now just need to do follow ups and decide if I would like to start Copaxone.

I came across this today

http://www.nationalmssociety.org/about-multiple-sclerosis/do-i-have-ms/index.aspx

the national MS society's page on "possible MS"

You may be able to find some answers there.

Have you ever heard about low dose naltrexone for MS?
Few if any side effects & very low cost.
Check ldninfo.org online.