Appt 2,000 & counting...

[Dsugrue]

How many doctors visits and tests until you received your actual diagnosis? My primary has given the diagnosis of MS, after I had my first official flare of drop foot (although issues for ages diagnosed as fibromyalgia).
My neuro so far is just wearing me out. I'm scared after reading so many comments, that this process could take years. I get it, but I really would like to start treating the fatigue and tingles and numbness. I've done blood tests to rule out other autoimmune disorders, an Evoke Potential which fell into the "normal" range. Thursday I did another round of MRI's on the spine, neck & brain to see if there are more than the 5 lesions they found last time. Apparently they are "pinpoint" lesions, so not big enough for an official diagnosis.

Any advice on how to manage this cat and mouse game, or other tests I should be doing? At this point, I am just ready to say enough until my next major flare, but worry that going years without checking in with a Neuro could be more detremental.

Thoughts?

[zeak]

Have you had a spinal tap/lumbar tap? Mine was done and it was the one factor, along with others, that gave me a final dx of MS. Now I am on DMD---- Rebif working good for me.

[aspen]

I hear you. It's a slow train. I am tired of the "hurry up and wait" of this process.

BUT it is important ... you don't want to be put on DMT's if it's not ms. Or assume an ms diagnosis and miss treating something that moves much more quickly.

In January will be my first anniversary of limbo. How long has it been for you?

[22cyclist]

Zeak is wise in asking have you had a spinal tap? An LP will give a lot of additional information at this point. Also, are the 5 lesions seen in your brain consistent with MS, or are they just nonspecific lesions? There is a big difference. If you have had an LP and it showed negative results, you may be in a waiting period until more lesions show which means until another attack shows up for the most part. If you get lesions without an attack, you are not hurting your body. You can collect lots of lesions in many places without it affecting your body. If you do get a lesion that affects your body negatively, this is good because at least you can get diagnosed and placed on a medication. We all go through this dog and pony show in the beginning. It is for our own good. Nobody wants to be on a DMT if they don't have MS. They each have their own side effects, some life threatening.

Just wait it out if you have MS, it will show its hand eventually. For now however, enjoy the freedom you have in limbo. Once you get something like MS, or lupus, or things like it, your freedom is done. So, stop trying to push so hard for a diagnosis and enjoy life for a while.

Take care, and let us know how it goes, OK?

Lisa
Moderation Team

[aspen]

For now however, enjoy the freedom you have in limbo. Once you get something like MS, or lupus, or things like it, your freedom is done. So, stop trying to push so hard for a diagnosis and enjoy life for a while.

Lisa, as one in limbo I'm interested in this comment. It is not feeling much like freedom to me (never ending doctor appointments to "rule out", to use OP's example) ... although I suppose if I was feeling great it would -- could push possible eventualities out of my mind and live happily in denial. (I've tried this but the constant physical reminders make it difficult; also why primary won't chuck referrals).

I'm also not convinced that having a dx of whatever means your freedom is done ... again, wouldn't that be more dependent on sx?

Perhaps it's a personality thing ... I find not knowing and unknowns a bigger challenge than knowns, even if they are negative (not even speaking medically here, but in any life situation -- would rather understand, be aware and make plans from there).

Would you mind explaining your thoughts, please?

Thank you, Lisa .

[22cyclist]

Sure, I was just meaning that you don't have to worry everyday about medications, your MS symptoms, your exacerbations, eye symptoms related to MS etc. Just general progression. I understand that limbo landers worry about their symptoms etc, I was just saying, try not to worry because you have the rest of your life to worry. Try to chill out for now. If you have something, worry then, If you don't you will have wasted all of that worry for nothing. I just speak from experience. Most of us do. Just don't waste your time worrying about something that may not happen, thats all. You will have plenty of time to worry later on if you need to. Try to bury yourself in something useful for now like a charity, or some other helpful event. Or, volunteer in your off time at a nursing home or anywhere to fill up your time to take away the worry time and get the focus off of yourself. That is what we have to do on occasion. It gets to be too much.

No harm was meant by it. Hope you will be able to find a way to redirect your worry until you are either diagnosed or definitely not diagnosed and set free.

Take care
Lisa
Moderation Team