Bump.
Hoping to find out more about changes in neuro exams...more on the side of abnormal signs on some exams subsequently showing a more positive result.
Thanks to All of You Who Have Responded:
Where to start?
First, I was very deliberate in bringing up the highly controversial paper about differential diagnosis. I knew that it would generate response from people who had read it, and at the same time maybe help people in Limbo Land who were unaware of the furor this article generated. The one plus I will give to the article is the comprehensive list of possible mimics at the end of the article along with typical presentations and tests results.
Secondly, this article talked about relapses. Responses to my post contradict the assertions made in this paper. Deb61 says she never feels good. We often hear from people in Limbo Land, but seldom get to really understand the big picture of life from the perspective of people who have a definite diagnosis of MS. I'm not dx'd, yet I can say that for the first 7 years since my symptoms started I did have some very good spells and a tremendous amount of energy. The past 3 years have not produced a single day where I feel good.
Thirdly, I was hoping to find an answer to changes in neuro exams. The responses so far are inconclusive. I have seen parts of my nuero exams that support decline, yet I also have results that contradict a prior abnormal finding (like a Babinski's sign that does not repeat itself).
Again, thanks to all who responded. I hope that others may have found this information useful to them as well.
Audrey
Okay, I made many typos in my post. The last typo actually changed what I intended to say, so I guess I better try to correct that mistake. I meant to say (in the second from the last paragraph) " . . . people with MS often DON'T have symptoms that neatly go away . . ."
You see what I mean when I told you I had cognitive issues? LOL
I don't know if the findings in my exam change, but imagine that they had because that is the nature of RRMS. I'm pretty sure that I don't have nystagmus anymore--so that's one thing that changed.
You should have gotten an extensive neurological workup for your first appointment--especially since MS has not been ruled out, and you have a past history of neurological issues. I had a complete neurological work-up for my first appointment. Now, I get a brief one (usually testing my reflexes) every time I go in. If I complain about a different symptom, he will do a neurological exam in that area.
I disagree with the report that you read. I actually can't say this strong enough. It is the same report written by Rolak and Fleming in 2007. I remember when Quix talked about it, and she referred to it again on my post. I looked it up again after Quix referred to it. It tried to give validity to neurologists who are too lazy or incompetent to figure out what is going on with a patient with a complex medical history.
I remember when I made the comment to my neurologist about hard it was for someone to figure out what was wrong with me (he already knew I've been to several doctors--most rheumatologists), he joked well they did have something write--it is all in your head! And he said, "It doesn't take a rocket scientist to figure out that you have MS."
It really does feel good when someone finally puts the pieces of the puzzle together for you. You'll find answers one day. I know it is discouraging right now, but sometimes another pair of eyes looking into things does the trick.
As far as relapses go, this varies so much! I've had relapses that sneak up gradually, and then one day I realize that it's not normal. I guess there was one day when I woke up and I literally couldn't see straight--my eyes were crossing. I think initially I thought I was just plain tired because I could straighten them out if I thought about it. I had to ask people if they ever woke up with their eyes crossed . . . LOL . . . because I lived with it for months.
I've also had "relapses" that lasted a day or two. I have to question myself as to whether or not they truely are relapses. Then there are relapses where the symptom sticks around for months. Maybe the intial "relapse" was gone, but the symptom remained for months. It isn't really all that clear cut at times. Most of the time, I think, it's an old symptom that kind of appeared after a little bit of stress or from being over-heated.
I can tell you that I NEVER feel good. That is why I disagree whole-heartedly with the people who wrote that article that you're referring to about symptoms always going away or with the statement that a person couldn't have MS because they never have periods of time when they feel good. I feel generally better, now, than my bad days, but I will never feel like a normal person.
I battle fatigue every single day of my life. It is not a normal fatigue. It is a stomach-churning, bone crushing fatigue that cannot be described to someone that has never experienced it. I also have some cognitive issues that have never gone away. There are some days, I guess, that are worse than others, but I will never be like the person I was before when my brain was not damaged by MS.
My eyesight is also not the same, either. It has improved since my last ON attack, but it's not really all that good, either. My hearing has never come back. I still can't hear worth a darn and need hearing aids which I can't afford.
I also get a head tremor when I'm just a little bit stressed. It's funny that it often appears at the doctor's office! I guess it would really be bobbing if I had to see a nimcompoop doctor that some of the people on this forum have seen! LOL
Okay, I could go on and on and on to show you that people with MS often have symptoms that neatly go away after a certain period of time. It just proves that the people that wrote that article just really don't know much about MS.
Well, I'm on my soapbox again, and I will have to stop. Best of wishes with your 2nd consult!
Deb
Hmmmm, only ever having had 2 neuro exams, the first was all of 5 seconds but noted the clonus on the MRI referal only to become irrelivant when the report concluded 'chronic small vessel disease'. The second was a lot longer but even though he had me fall (almost) flat on my face, which i'm sure was just his way of getting me to bow at his feet lol and he had me fall backwards onto my now bony toushie.
Giving him quite a few good kicks as he repeatedly put me through lessons on what it feels like to be (repeatedly!!!) tasered, muscles firing up my left leg that did my head in, which was something new, i'd definetly not seem me do before. In the first neuro exam i had trouble locating my right shin, in the heel to shin test. My left leg just over shot the shin, and then once i did run my left heel down my right shin, the skin on my right rippled like a worm running for cover. So very very weird, but it didn't happen on the second exam, hit the shin first shot, and definetly no rippling worm lol.
So with just the 2 exams (approx 12 mths apart), some clinical sx there on the first but not on the second, yes so have come and gone. And a few clinical sx new on the second exam, with some old clinical sx stronger than they were before at the first exam. Thats all irrelevant though cause according to the last neuro I saw and I quote "You dont have a neurological condition" which makes him a neuro that can't recognise someone with classic clinical sx of a neurological condition not yet determined ROFL!
Cheers.......JJ
JJ:
Yes, that is the piece that has had Quiz go ballistic several times in extraordinary detail. The woman is passionate and speaks her mind when things strike her as preying on ignorance or trying to spread misinformation. Thank goodness we have her!
You are so good with descriptive (and humorous) writing about your symptoms. I recall that you have extremely brisk reflexes...like the doctor should stand to the side or risk being kicked to the other side of the room.
Have you ever had a neuro exam where your results showed an improvement over a prior exam?
Just curious...I know that symptoms come and go, but am wondering about results on the neuro exam. Intuitively, I would think that they could change as well.
This puppy is going to pack herself off to bed. Sweet dreams to all north of the equator and good day to you south of it.
Audrey
Is that from that horrible piece of questionable research, that had Quix going troppo and listing in detail all that was wrong with it? I maybe miss quoting but i'm sure this was said to have been the most damaging research paper to MSers because of how bias and incorrect it is but due to it being out there, neuro's read it and MSers dont get dx!
I'm without a dx but i have 2 or 3 episodes per year, they take weeks to months now and I can no longer go back to my perfectly normal base line. Each new baseline becomes my new normal, finding the balance of what i can do before I set off sx that i'd like to keep dormant, can get a tad tricky but doable.
At the moment i feel like everything is switched on, all circuits are firing in the right places but a trip to the supermarket knocked me sideways. By the time i got to the car i was almost in tears, knowing i was doing a naughty by driving, not having the strength to drive home and being too stubborn to admit defeat and call for a rescue. I ended up eating a handfull of glucose tablets and drinking a can of soda, hoping the sugar rush would give me enough strength to drive the 5 minutes home, it did, just! I didn't have enough muscle energy to talk or eat and when i tried to walk to bed, i was bouncing steps and looking quite drunk as I bobed and weaved down the hallway.
There's nothing I can do to stop falling over when i look up, if i'm thinking i'll brace my self first, if i'm not which is most of the time (lol) i just do and then play tree falling in a forest, i'm not really sure if i'll ever get use to that one. DH and I have talked about how different i am with out the fatigue that comes (like a bad smell) with my episodes, with out it i'm moving forward, with it i'm going no where!
I think its possible to have a lesion that is still able to repair or due to brain plasticity the sgnal is able to redirect around the damaged area, (there are technicall terms lol) once it's no longer able to repair or redirect its self, then the damage becomes complete. In my mind its not perminant 'yet' so i'll keep on doing and expecting my brain to rewire, I think it helps me to keep thinking that way.
Cheers.......JJ
I think the "Symptoms of psychiatric origin" may refer to "depression, lack of attention, brain fog, etc." in PwMS, not conversion disorder. Many PwMS have psychiatric issues related to the direct effect of the disease. There are physiologic brain changes in PwMS, and I don't think we should just dismiss that. Conversion disorder is a label tagged on those with out a diagnosis. I think we must make sure we just don't dismiss the damage that MS does to the brain beyond the physical signs.
Bob
Oh, I should say that I have between two and three relapses a year.
I have relapses, which typically last anywhere from three days to three weeks. I also have symptoms which appear, typically for about three months, then disappear, only to be replaced by something else. I've never had a relapse that completely resolved.
I would run away from any sort of document that talked about symptoms with 'psychiatric' origins. It's a veiled reference to conversion disorder, which is really just a bunch of bull.
I'm not sure about the different CNS symptoms at different times. I've had leg weakness since diagnosis that has never completely resolved. Yet, perversely, my leg was nice and strong for my visit with the neuro in September! It was weak just the day before. Then it got weak again, and then got better - just in time for the blood clot. :-\
I would do a couple of things. First, if you haven't had a 3T MRI, ,get one. For diagnostic purposes it's invaluable. A spinal tap isn't necessary for diagnosis, and often it throws the neuro off if it's not positive. But if you're feeling symptomatic - having a flare or what you think might be a flare - it could help. Feel your new neuro out on this one. Don't do it if he seems like an inside-the-box thinker. A test that could really help you is optical coherence tomography. This isn't available in a lot of areas yet. This test measures the thickness of the optic nerve, and it's been shown to consistently show atrophy even when the MRI is inconclusive.
Good luck! Hang in there, and stay strong - you are your own best advocate for your health.