frustrated!!!

[barnettmichell]

I have been dealing with this is weakness, straggling to walk, clouded thought ect... for over a year first bout the doc said the muscle spasms were stress and blew it off next issue a year later this time I'm armed with video and diary of events. So different doc says not normal and says off to specialist. Since they did an MRI 6 yes ago and I didn't haveMS then that it ccan't be now???? I have a hard time believing this. I work with doctors any who I let know what's going on says they need to check for MS why is this so hard??? Anyone else struggle like this Iwas told to go back to doc that referred me to specialist and go from there. But wondering why now flare up is gone all I have are videos to show my gate and talking and thought in a flare up

[22cyclist]

barnettmichell: Neurologists and MS Specialists can tell how you are doing neurologically by your neurological exam. If it is abnormal, you will need an MRI, if not, you won't need one. Your neurological exam will be abnormal in MS whether or not you are in a flare. Usually you will at least have babinski signs. If normal, there is generally no need to do another MRI. Perhaps they saw your walking and did not recognize it as a neurological pathology. That can happen. MS specialists are really good at determining what is MS and what is not. You can go for a second opinion with another MS specialist, or if you have not yet seen this MS specialist as it was not really clear in your post, then wait for your appointment.

It is frustrating being in limbo, but sometimes there are good reasons they do not do testing, or do not fast-track you to testing. Your symptoms may not warrant them. They may to you, but not to the professionals.

So, get another opinion if you think you need to, if it will make you feel better. Its your body, but also listen to the reasons why they will not do testing. If they do not tell you, ask them. Then ask them to test you for the other 400 mimickers of MS.

I hope you feel better soon.
Take care
Lisa
Moderation Team

[MSer102]

Your neurological exam will be abnormal in MS whether or not you are in a flare.

I can't even imagine where this statement came from. That is absolutely NOT true! I have had normal neurological exams between flares even after being diagnosed with MS.

barnettmichell there has got to be more to your story than you're telling us to have made you so frustrated.

With so much frustration and so many unanswered questions and so many things you don't understand, I think the best thing you can do is take your medical records and your videos and get another medical opinion. And don't leave the exam until you understand what's going on including what your symptoms might be caused by and what will and won't be done and WHY those things will or won't be done. The place to ask your questions is at the doctors office, not on the Internet where so much misinformation gets spread around.

I've been reading forums for many years and the people who struggle the most are the ones who don't speak up for themselves and leave their medical appointments without understanding what's going on. If you were told to go back to doctor that referred you to the specialist then start by doing that. And don't be afraid to speak up for yourself and ask questions until you understand what's going on. That's the only way things get done. You can do it!

[22cyclist]

MSer102: If you have a babinski sign, it does not reverse itself just because you flare leaves...it is there to stay. If you have weakness in one side it may be less, but is usually noticeable in some way if anything at all is left over from that flare. Most all MSers have a babinski sign as a sign of CNS damage. If you are telling me you have none, then you must only have 1 lesion. Where I got that tid bit from was my MS specialist. You are so quick to give advice from your Neuro-ophthalmologist as gospel so I am giving my neurologists advice. There are other things the neurologist looks for to see if something is coming from the CNS you can do a Hoffmans test (although not as widely used), reflexes-brisk (can be from many causes), eye exam, balance testing (hoping on one foot etc.), Heel-toe-walking, finger-nose-finger testing, Romberg, all in the neurological exam. And, yes, an MSer will have something wrong with them on exam even when they are not in a flare.

Lisa
Moderation Team

[onlyairfare]

I do not know about the pathophysiology of the Babinski sign, but I understand that theoretically once it is there, it is there permanently. Nerve tissue "doesn't repair itself."

That said, I have had a positive Babinski sign in the past, but it was not present on my last neurological exam. My neuro, an MS specialist, had a student with him when he saw me, and he was planning to use my exam to demonstrate a "classic case" of positive Babinski, to teach the medical student. He used my asymmetric brisk reflexes as a demo instead, so the student could see at least one neurological abnormality. Now my right leg is weak and the reflex is so brisk I tell the students to "stand clear" so it doesn't knock them over.

On more than one of my episodes of optic neuritis, I had a Marcus Gunn pupil ("swinging light test'). It wasn't there every time I had ON, and it is not there now. In fact, I have been incredibly lucky in that despite many severe ON episodes, my vision is now entirely normal, or at least correctable to normal, as I am still near-sighted and need glasses.

I would conclude that different neurologists have different opinions on the same topic, and that some patients have an MS disease process that doesn't always obey the text books. All part of the fun of MS.

[MSer102]

If you have a babinski sign, it does not reverse itself just because you flare leaves...it is there to stay.

Again, I can't even imagine where this statement comes from. Of course a positive Babinski doesn't reverse itself just because the flare leaves. It can reverse itself because the damage heals.

A Babinski reflex is NOT automatically there to stay. I'm living proof of that. I have had spinal cord lesions heal to the point that they aren't visible on MRI anymore and the Babinski that went with them resolved as the lesions resolved. Am I supposed to tell my neurologist that she's wrong just because some smartypants on the Internet says so? It's harmful to people who come here for truth for anyone to be spreading that misinformation.

I have had a positive Babinski sign in the past, but it was not present on my last neurological exam. ... On more than one of my episodes of optic neuritis, I had a Marcus Gunn pupil ("swinging light test'). It wasn't there every time I had ON, and it is not there now.

Yes, of course nerve damage can heal. Thank you for pointing that out. That's the remission part of relapsing-remitting MS. That's the recovery part of strokes and traumatic injuries.

Anybody who believes that nerve damage doesn't heal and that Babinski signs and afferent pupillary defects are automatically here to stay - and any neurologist who perpetuates that myth - well, y'all really need to get out more.

[22cyclist]

This board is made of opinions and people helping people. You learn something new everyday. Thanks for teaching me something onlyairfaire, but you also prove my point that some damage is left. MSer102 your points would be much better taken if your delivery was not so blunt or given with a slap in the face. You don't know everything and yes even you too have been wrong in some posts so don't be so fast to pounce on people. Just post your own posts. Leave the cattiness out. You will get much less back...

I get out plenty, I have a PhD in nursing, that doesn't mean I might not be wrong occasionally. However, I am not stupid nor is my MS specialist, and I don't appreciate the implication.

Lisa
Moderation Team