Another test that I have to do that really showed my progression was touching every finger to my thumb. Right hand is really fast, my left hand (the side effected the most)is alot slower. I think after doing this test it made me realize that I had issues.

jan53, FIRST.I'm not offended by your comment. But I did want to follow up on it.

You know how people with MS people are always saying people w/o MS just don't understand and can't immagine it...I would take that one farthur people and say people w/MS cannot understand a symptom they have never had before...but once they have it they recognize it.

I have never had that electric shock going down to my leg when I bend my head, so I can't really understand it. Although I do hav 2 lesions on my neck that is suppose to cause it. It never has caused it for me.

When diagnose the doc asked me to bend my neck to me chin...I had no idea why he asked me. I did it and looked up at him, ok? I thought he was testing to see if I could move my head. After much time on MS boards, I realized he was waiting for me to describe an electrical shock feeling. I didn't, even though I have. I did have the lesions on my MRI that said I could.

Same with this 'touch my finger touch my nose", if you haven't yet experienced the realization that you can't find your nose after touching something, you won't understand the experience. The first thing you want to do is look cross eyed to see where your nose is! Its an unbelievable experience.

It's not something you do routinely, so you never would expect it to happen. When it does it's a SHOCK! It was useful in the second appointment, because she then asked me questions about things I do, do daily that I am having more trouble with...

BTW, the MRI that diagnosed me was loaded. I could have "legitametly" by the MRI have had this problem for the last 4 years. I didn't until now. The brain is able to re-route around damaged areas & though the MRI that diagnosed me just stated "extensitve white matter demylenation consistent with MS" I didn't have this problenm for 4 years, despite an MRI that said I could.

Now to make it more complex.. the MRI is only able to measure demylenation. Myelin is hydrophibic, it repels water much like salad oil repels water. Humans are 95% water. So were myelin is missing, the MRI measures high water content. What the MRI can't measure in actual nerve deterioration. That has to be found out through all those tests.

The most seriously affected by MS(SP & PP) are still "unmeasurable" by MRI.

Yes it can be "faked" that's way there is so much antipathy against MS people by non MWS people.

When you experience the symptom, you will understand. I'm glad you do not understand yet. Most likely you will eventually.

A while ago I spent some time on the nmss.org SP board trying to understand that phase. Be cause my memory isn't as good as i like, I copied posts I thought interesting...

I would like to copy one here, I hope the poster & date copies too...About these tests.

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Nanners
New Poster
Join Date: Mar 2007
Posts: 18

How do you know?
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My new neurologist explained it to me so much better than the neurologist I've seen for 6 years - when relapses don't remit (go away) and the relapse causes a continuation of a problem (blurry eyesight, stiff legs, etc) then that is progressive. And just like the word 'progressive' means, the condition gets worse over time.

But be assured that relapses can last a long, long time without a recovery phase. I was relapsing/remitting for 10 years. Then in 2006 my neurologist decided that I was SPMS, just barely but enough to put in my chart. I had hoped to go through this silly maze called MS as RRMS for longer than 10 years but that is not to be.

I hope that you have a good support network. You know you always have us here.
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mack
Fairly New Poster
Join Date: Jan 2007
Location: Andover,Ma
Posts: 72

MY NUERO SAID IT WAS SPMS BECAUSE I DIDN'T HAVE ANY ATTACKS AND MY TEST SCORES CONTINUED TO SLIDE. HE SAID THAT I WAS HAVING SILENT ATTACKS. I WAS DX'ED IN 1994 WITH RRMS AFTER SYMPTOMS FOR 20 SOME ODD YEARS. DX'ED WITH SPMS 2003. IT IS A LONG AND WINDING ROAD.
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Lynn, I agree with what you said. I even find myself rolling my eyes on some of the post here. You just made me realize how wrong that is.

At this moment I do not have pain, so I really don't understand that symptom. After I spent some time with someone who has alot of pain...it opened my eyes...thank you Jen.

We of all people should be understanding of all of our fellow MSers symptoms....if not us then who?

I appreciate the thoughtful discussion that is taking place. Lynn, thanks, you know when i say something it isn't to offend. I appreciate your saying so. I completely agree that being able to use something like demonstrating an intention tremor is an excellent way for people to understand such a symptom. If there is anything i've learned in my long battle with MS is that invisible symptoms don't exisit for anyone but me.

You are right, I can explain L'Hermitte's to you, but if you have never experienced it, you won't understand it. L'Hermitte's sign was my FIRST symptom. At times it has a long duration other times I do not experience it at all. If i were to go to the Dr today and he asked me to bend my neck and didn't know what L'Hermitte's is he would record that I did not exhibit that. If he asked me, do I ever feel a shock running down my spine through my legs when I bend my chin to my chest I would say YES! But the experience you describe, the Dr. doesn't ask.

After almost 30 years of this MS monster, I am sure, abosolutely sure, that i have experienced symptoms that I did not know were symptoms and blamed it on something else.

I guess my "beef" if I have one, is with physicians. Not that I think any test is silly. Its that I think the way the use it is often silly and often misleading.

They are often looking to check all the boxes.

Geeze, I just had to look back at your original post. We've (everyone who has participated in this discussion) have really taken the scenic route, so to speak. Good post to have opened up so much discussion. These are the ones I like.

You guys are great! We should do this more. And Really, I hope no one gets mad when there is disagreement. I LIKE to hear everyones comments. AND, you might have even persuaded me on the finger to nose test. If my doc doesn't do it at the next appt. i'm going to feel slighted.
:-) Jan

I can do it sometimes but not if I am tired and flaring. However what i do find funny is my parking my car. I live in the UK so drive on the right. When I park outside my house I literally cannot park with the passenger side on the kerb, I now have to always drive with the drivers side on the kerb. If I do it the other way, my car is in the middle of the road parked LOL. I noticed when I loose balance I always fall to the right too, how weird is that.

This neuro stuff is bizarre isnt it.

ANytime Cher! lol

Hi DSLynn-
I have shown some of my friends the tests that they do to me, and then the questions come... I love the word proprioception. Twenty years ago, after an ACL surgery on my right knee, the PT made me stand for minutes at a time on a proprioception board. Now the definition all makes sense. I can explain to them how I continue to walk even though the bottom of my feet feel like big wads of socks bunched up together and have no feeling what so ever in my lower legs. "knowing the position of the body in space". That's it,... thanks for putting a word to what I have been trying to explain to everyone. As we live each and everyday, someone mentioned the best changes... i keep explaining to family and friends that I am "great" for my "new normal". My best to you! Barb