Guys, I am honestly not trying to hijack your wonderful forum, nor cram anything down your throat (so here's where I appear to do just that) but, do you think it would be a good stimulator of discussion if I started a thread with the full text of this (like I did for the McD Criteria?)



I spend a lot of time helping people understand these points and many people have never considered them. Three of these things actually happened to me.

Quix

I, for one, don't think you are doing anything hijack-like or cramming anything. This information has been wonderful and refreshing. It's kind of like a swift kick in the butt I need to maybe, possibly start pushing for answers again.

I am grateful that you came over here. I would have never learned so much so quickly. As you know, I came over to med help to learn more, too!

Hey Quix! Do you still knit? I'm a crocheter (crocheting since I was 6) and a novice knitter. (learned to knit the day before I got optic neuritis)

I'm obsessed with both crochet and knitting and since I love to do them, I consider both as therapy. Keeping my hands and fingers moving, and also keeping me from going totally nuts from all the weird MS stuff. The knitting is what distracted me from the really bad optic neuritis in 2006. I apparently needed the challenge, otherwise I dont think I'd have learned to knit.


I saw several doctors in my quest to find out what was wrong. It was the neuro-opthalmologist I was referred to by my opthalmologist that seemed to think I was faking. He told me that he didnt see any evidence of ON. (the pale optic disk was apparently not enough for him and the lack of color vision in that eye was apparently an "anomaly")

If it wasnt for the fact that my regular doctor believed me and was actively trying to figure things out for me whenever I saw him, I probably would have gone off on the other doctors.

I get the feeling that a lot of male neuros are still under the impression that women become "hysterical" at a certain age and that all their neurological problems are imagined. I've read some about the way women were treated in the post-Civil War era, and I sometimes feel that they're actually teaching that garbage in the medical schools.

It's really bothersome to go to a doctor, hoping for answers, and the doctor treats you like you're disturbing him, and ruining his afternoon. You come out of that appointment feeling like you've just wasted the day driving down there, parking, walking all over the hospital trying to find the guy's office, only to be told that there is apparently nothing wrong with you, even tho you were walking into walls because you cant see thru one eye, and the vertigo is trying to trip you every few minutes.

Great place...Med Help...thanks for the link and info..:)

This is my Home, but that's a nice place to visit..:D

So nice to meet you and Welcome to Neurotalk..:hug:

P.S. Love your Cat!!!!:D

Yes, I was knitting prolifically but now I have some sort of weird pain in my right arm that started like tendonitis in my forearm and now involves all the muscles of my forearm and most of my upper arm. It doesn't make sense unless it is also something with the MS - then it doesn't have to make sense.

Arrgggh! No ON becasue the exam is okay!!!! Sheeesh! what are they teaching ophthalmologists? 50% of ON will not have signs on the exam, but can be picked up by MRI or VEP. This is because the site of demyelination is farther back on the optic nerve. How come a pediatrician knows this and they don't!

No, the pale optic disc is the sign and the loss of color saturation is classic!!

And we wonder why we wander in the Lost Land!

Quix:mad:

Hmm, knitting, crocheting and computer uses - your arm symptoms could be RSI or TOS {thoracic outlet syndrome} related...
we have a forum for that too :D
check the sticky- number 1 has concise crash course links
http://neurotalk.psychcentral.com/forum24.html

posture? forward head, forward shoulders??
any neck tightness or upper back aches/pains?

And guess what - it is as mysterious as MS - unless you have an extra cervical top rib or certain anomalies that show on x ray or MRI - it is very hard to find a dr that can /will dx it correctly.:(

my eyes were affected by spasms & trigger points - watery, blurry, sensitive...

Thanks, Jo, I have RSD in my R lower leg. I don't think this feels neurological. The muscles themselves are tender to the touch and when contracted. They also ache at rest. With each week or so that goes by more muscle groups are affected. My back posture is very good. No back pain except the R lower spasticity through the hip.

Neck head posture not as good, but no pain/aches.

My recent relapse involved weakness of the r arm/leg. Contrary to the usual spastic paraparesis, I have an increasing R hemiparesis. Go figure. I'm going to have PT check it out.

Thanks for the tips,

Quix

I've been getting weird pains in my right hand that feel almost arthritic. I will just knit or crochet slowly when the hand hurts, unless it hurts too much to do anything.

I had an EMG about a month ago to see if I had some CTS happening (had CTS surgery on the right hand in the early 90s) Had that done because my arms will go numb while I'm sleeping. The neuro said it's not CTS, so he thought it was either MS related, or that I sleep on my side and dont move at all while I'm asleep and that something is getting compressed. (I think it's because I sleep on my side)

There's something going on with my shoulders too. When I wake up in the mornings, my left shoulder is usually the reason for waking up. It hurts a LOT! I dont know exactly why it hurts, only reason I can think of is that I can dislocate my shoulders at will...painlessly. But, I think sometimes when I'm sleeping, my shoulders will pop out of joint on their own, and since I dont move around while I'm sleeping, I think that might be why it hurts so much when I wake up.

Whenever I've tried complaining about things like that to a doctor, they just kind of look at me like I'm purple with pink polka dots. Then the next words out of their mouths are "it's probably MS related" and then dont offer up any suggestions for what to do.

So, now that I've got MS, the doctors want to blame all my problems on the MS, rather than actually investigate aches and pains. Great...lazy doctors.

That same PCP I had long ago who said "You're never too old to get MS" also had an interesting remark about neurologists.

When I saw her again several months after she'd referred me to neurologist RR (that's RiR--there are two RR neurologists in Portland, and they're cousins), and she wanted me to go back to a neurologist again, I said "OK, but I don't want to see that neurologist again. He didn't talk to me about my symptoms." (He was the one who examined me very methodically--my first-ever neuro exam--referred me appropriately to an ear specialist, and then basically walked out on me--when I asked him, on his way to the door, "but what about the tingling and shocks and so on?"--he said, "I think you're just paying too much attention to the sensations in your body." And walked out.)

My PCP replied, kind of sotto voce but very pointedly, "Yeah, these guys are smart, but they're SO arrogant!"

Nancy T.

Oh, my. So, I saw his cousin. They're in the same office. Interesting they are the same. The one who could have had me on DMDs two years earlier! Do you know that they are the son and nephew of the actual doctor on whom the movie (The Doctor) was based? All about the need compassion in physicians. Well, I have also briefly seen two other Neuros in their clinic (other office) and they were as big SOB's as those two.

And, yes, I bear a great deal of anger and animosity toward him.

Contact me privately if you want info about the guy I who diagnosed me. Big ego, can be arrogant, but prides himself on good care and is capable of thinking laterally.

Quix