Thank you for this post.
I am sorry you could not have started tx earlier.

Another URL that backs up the same findings in other research.

http://www.webmd.com/multiple-sclerosis/news/20070601/super-early-ms-treatment-best
"Permanent damage happens very early in MS, much earlier than we had anticipated," Freedman says. "That year to year-and-a-half delay in treatment translates into an accumulation of disability. It was startling to see that at just year three of the study."
Rx: Super-Early MS Treatment

This means a sea change in MS treatment, says Robert Fox, MD, medical director of Cleveland Clinic's Mellen Center for Multiple Sclerosis Treatment and Research.

"We have finally shown that treating MS super early can have a significant impact on the development of disability, which is what patients are most worried about," Fox tells WebMD.

"This isn't just early treatment -- early treatment is when a patient has had a second episode. Early treatment now turns out to be late," Fox says. "This is the first study to show we need to treat super early, after only a single attack with the diagnosis of MS not confirmed."
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Me- If you have a clinical symptom ie 1-2 lesions on the brain or C-spine which is indicative of MS along with fatigue & weakness you need to print out this info and bring to neuro that SPECIALIZES in MS. Make sure you don't have Lupus, RA, Lymes, ALS, B vitamin Deficiency. If you don't have any of the other conditions that can mimic MS GET TREATED for MS.
I am sorry Oleblue progressed faster with delayed treatment but it is awful nice of him to post to try to keep this from happening to others.

Hi, thanks ,,our neuro believes in first episode,,meds,, thats why we see a big difference between generations. Younger people get dx and meds faster nowadays, as before a Dr waited too long, second episode before dx. No better example of that, than my daughter and I .
It's very frustrating to imagine we could be better today had this protocol for dx existed then,,,,I guess we will never know, but in the other hand I'm very happy for my daugther.

Love, Alma

I had a "first episode" in my early 20's. I saw every doctor and had every test - except MRI and no one could figure out what was going on. Looking back, I know I have had relapses over the last 25 years but throw in the mix 7 pregnancies and hypothyroidism and the doctors blamed everything on that. Of course you are tired, brain fog, muscle pain, depressed, vision issues because of weight gain, etc. they woud say.

It wasn't until Oct 2010 when I had a full out attack on my brainstem that doctors really started paying attention and even then I wasn't officially dx until Nov 2011.

All this to say that if I focus on all the years that I went untreated I would be a disaster :-)

I believe that God has a plan for my life and it is good. I have 7 wonderful children and I am grateful that I was spared the worry about MS while bringing them into the world. I am slowly losing my ability to function but I choose to live every "functioning" minute well and to the glory of God. Not always easy, but always worthwhile!

Bump
I hope limbo landers read this

I haven't been through all the links but I agree totally. I was in "limbo" for 5 years that I can definately had symptoms & tests but there were times when I had problems before that.
I am sure if there was treatment it may have helped me, although I was allergic/sensitive to the crabs. Doing better on Gilenya finally.

UGH..... so frustrating Dave!!!! I agree with you, all those in limboland need to be persistant and keep talking until a doctor actually listens. Keep a journal of symptoms and when they occurred, along with what you are eating and your exercise as well. It is helpful to have that journal when you walk into the doctor appointments. You need to advocate for yourself because this can so many times be such a difficult diagnosis to make.

I wholeheartedy agree with kat, I think I had signs od MS years ago when my babies were young .In a way I am glad I never was diagnosed until now , as if I had the worry of MS hanging over my head when I was raising young children i think it would have been extra hard to cope. I think that the last two documneted episodes i have had are a sign that things are advancing , I want to start treatment asap and at my next neuro appointment his Tuesday we will look at which treatment to begin.It may be too late , but I can't dwell on that .There isn't time for analysing the past i need to look for the future as most of us do.It doesnt take away the unfairness of it all and I do believe that there has to be better research into MS to enable a testing system that takes away the doubt. I also think that some neuros don't seem to acknowledge MS It has too many symptoms that can be dismissed, too many differentials patient to patient, not enough clarity and far too much that is left to conjecture. Being on this site is an eye opener, that so many MS sufferers can go through the same struggle for diagnosis, worlds apart, it has got to lend some weight to the question,,,why?

Thanks for sharing Dave. As a limbo-lander, one of my biggest concerns has been early treatment to slow progression. Neither of the neuros I've seen are willing to make the diagnosis yet and my options are very limited.

I'm almost at the point that I hope my LP shows something so I can leave limbo land!

Thanks for thinking of us 'Limbo Landers'! I've read a ton of research similar to what you provided in this post...and tend to agree with early treatment being the best option. I am starting the whole process this week of getting a second opinion...the second opinion hopefully coming from The Ohio State University in hopes they are more willing to do everything they can to help me come to a diagnosis.

BIG Smiles :D

Jamie

Good Luck this week Jamie. I hope it goes well for you sweetie. Please keep us posted as to what the verdict is for you.

Mean while you are in my thoughts and prayer's dear.

You are just too sweet and such a cutie to be so sick.

Kath