My wonderful chance opportunity!

[Sunnytoday]

I got to see a new neuro, by complete surprise!

Here's the story! So, where I'm completeing my clinicals is actually where I volunteered and worked 2 years ago. They know me well. :) But as a person who can walk and talk clearly, so the change bothered them greatly.

They paged the leading neurologist at our hospital and had him come in and examin me. Yes, at work!

So, the verdict is....

That i'm very strange. Grin. Ok, so he's foreign speaking and I love his accent, so I'll try to impart some of it through-out the conversation.

First, he checked my feet and legs for a long time. Then he remarked that I've lost some muscle tone already. But that it is NOT what he thought I would have when he first walked into the room. (he wouldn't say what that was). He kept muttering, strange, strange, strange.

Then he checked my reflexes. How strange he said" I think you should have NO reflexes. But strange. You have TOO much!"

Lastly he grilled me on tests that have been preformed. (keep in mind, this is a fast exam, he's at work and so am I)
He wondered if a spinal tap had been done. No I replied. "how extremely stupid"
He asked about a spinal MRI. No, Dr. DWI won't do one uless the C-spine lights up. "How stupid, just stupid".
He asked about nerve conduction studies. No I replied. "This is just uncalled for!" He said.
He finally asked me WHO my doctor was and when I told him Dr.DWI he just busted out "that was my resident, he is hard-headed, not learn anything, this is just not right, what is he DOING!! Have I not taught him ANYTHING??"

He turned around as I was going out the door and commented that Cymbalta was a "dumb" choice of medication and he just can't figure out what Dr. DWI is doing.

He also said that I have a back problem, a hip poblem, and he is just "unbelieved that Dr. DWI is not doing SOMETHING!!"

He wanted my MRI's immediatly, so I told him where they were located and with that he disapeared, and promised to return next week with more questions.

And I didn't even have to pay for a consultation, or wait 6 months to get in- as he's the best peds neuro in town with a waiting list that stretches from here to christmas and beyond.

I'm just so relieved to have someone understand, and care.

Please, everyone hope, pray, cross your fingers, whatever... that this doctor will look for answers for me.
(I'M SO HAPPY!!!)
~Sunnytoday~

[Rena705]

You are sooooo fortunate to be able to get in to see this fellow and it sounds as though he is not happy with Dr. dwi is he?

I will be waiting to hear what else he has to say after he see's you MRI!  Could be very interesting!

Good luck honey,

Rena

[Quixotic1]

YIPPPEEEEEE!!!!!

Well, well, well,  just the neuro we've been hoping for.  We like Dr.s that agree with us.  You gave me a real chuckle and real hope that someone will move on you (no, not make a move on you!)

He sees Dr. DWI for what we saw him as, bullheaded and dimwitted!  And not very nice.

Given his unhidden opinion that you have been left to twist in the wind, I do suspect he will strive for some answers.  We know at least what he thinks should be done; an LP, spinal cord MRI and maybe an NCS.  Where else have you heard those recommendations?

I wonder if he was thinking CIDP (Chronic Inflammatory Demyelinating Polyradiculopathy) when he was expecting no reflexes.  I agree the combination of hyperreflexes and low muscle tone would be unusual.  And yes, Cymbalta, to treat obvious nerve pain is too bizarre.  It is more for the diffuse vague pain associated with depression.

My fingers and toes are all crossed for you! (okay, so they're crossed anyway, but it's the thought that counts!)

Good luck, Kiddo!

Quix

[Sunnytoday]

Yes, I'm still smiling, it stretches across my entire face!

And yes, again (smile, as always) ya'll were right, those tests must be run. I just knew there was SOO much more that could be done!!

That CIDP does sounds like something that he was muttering under his breath, but that accent was pretty thick.

He was also muttering that he was looking for muscle atrophy and was finding some, but not much, but then he understood when he found out this walking problem just started in May and worsened two/three weeks ago.

I can't explain my body, I can only go through the exam and let it do "it's thing" and pray for answers.

I always knew I was a bit strange, in the medical world. Grin.

Um... why do I have hyper-reflexes? And, as odd as this may sound... they seem to be getting worse by the month. Last month it was sort bad, but now when you wack my knee that leg just swings way out there. It feels funny. Is this common? (I remember other mentioning it, I think, maybe, sorta, kinda... ok, So i don' know if they did or not)

~Sunnytoday~

[Sunnytoday]

Quick note, the new neuro did say that I did have plenty of muscle in the leg.. does that mean I still have muscle tone? Not exactly sure there, but both he and Dr DWI do agree on that one thing, that I do have leg muscle. Hmmm.... I could have told you that, as I was very active and excercised, walking several miles a day before this whole just slid downhill.

So, have plenty of leg muscle left over from all my excerising, but can't get the brain to tell the leg to pick up the foot, or something like that. (my un-medical explanation). I have atrophy too from my funky walk the last month or two.

Let me know if I'm making a whit of sense, here.

Ok, have to run, youth meeting is soon, and I've got a ride tonight.
~Sunnytoday~

[essdipity]

Great news!

Now here's my advice:  If you see Dr. DWI again, ask him to check your leg reflexes once more. Try to angle yourself so he's right in front of you. With any luck you'll whack him right where it will do the most good!

ess

[jensequitur]

Yay!  Snoopy dance!  Well, you are a weird case.  For somebody your age with that many obvious neurological problems, and your rapid decline, it's very strange, as Super-Neuro will attest.  So I'm glad he's putting some personal attention into this.

Hyper-reflexes... Quix can explain that better than I can.  Basically your nerves are firing faster than they should - all or nothing.  Another MS symptom, really.  Check out the Health Pages on 'Measuring the Tendon Reflexes' for more info.

Muscle tone... With your gait difficulty and foot drop, it's not unusual to see some atrophy in your leg.  I started having problems with my right leg, and it's now a little smaller than my left.  

However, while it is weaker, some of the muscles in that leg work just fine.  I lifted weights today, and despite the fact I haven't lifted in over a year, I'm still lifting close to the weight I was at when I stopped.  

Basically, it doesn't matter how much muscle you have there, if your nerves aren't telling them to contract and lengthen, then there's nothing you can do.  Kinda like trying to turn the lights on when the electricity's out.

[Sunnytoday]

thanks for the explanation- I like that one... it will work wonderful when all these inquiring minds ask me "why doesn't your legs work?"

Hmmm... Can't get my leg's reflex to kick quite high enough for the harm that ess mentioned, but just wait, at the rate they are going, they will get there in another month or two. Smile.

~Sunnytoday~

[Tahiri_Veila]

I am very happy that you finally found someone who cares and will listen.  Good luck and keep us all updated.
Tahiri

[debral09]

Just wanted to say that I am glad that someone is going to listen to you and try to help you!  I will be sending positive thoughts your way!  I am also glad that you are feeling better!  Keep smiling and try to stay positive as that will take you some distance!!!!!

Hugs to you!
Debra

[santana8]

I am so happy for you, grab onto that new doctor and don't let him get away!!!!!!!!!!!!!

~Santana~

[AMO]

hi sunny,

funny when youur dorrs get open you don 't  expect.
iapplogise i don't rememeebr all your history.

i have both, hyperreflex and low tone (hypotttonia). THat can come wiith or out weakked. I thankful an not to weak. so i do not show much signn of muscle atrophhhy compair to all the years.
i have some form offf Cerebellaar ATaxia that acounts for the lack of tonnne. As i  get  it has to do with apposing muscles.
I have been dx'd having two dx's . m.s. and cerebellar ataxia (not from  the ms however)

I hav eseen doctors(great docotrs) many years and typical each time they keep scratching heads and last timee my ms neuro said i make him feel  dumb.
But they have nevr given up ,

i did post before asking on hypotonia. I fi understand correct this is what you are saying is showing inyou aas well?

i hope you have a good day suny,  hang in therre, amo

[wishforchange]

Many years ago I took myself out of the primary care system in disgust, because of some terrible treatment I had received.  Do things ever change?  Years later, desparate for any work, I found work in the health service.  Started me into this whole strange career.  Point was, that whilst there I saw an occupational health manager who after examining me bypassed all the usual routes and got me seen by some top consultants.  When you work in the system, very ocassionally these things happen.  At the time I was ecstatic, it would have taken forever to see this person and here I was with a personal invite!  They just wanted me fit to start work.
Wish I could say there was a fairytale ending and all was found, cured and happy ever after.  Didn't work out that way, but this internal referral by this occupational health doctor,  who was going way outside his job and could even have been disciplined for it if it wasn't that he was head of the service, got me back into the system.  Were it not for that now, even with all the problems I have had getting a good consultant, I would likely be nowhere, either than perhaps in a mental ward somewhere because I was convinced I couldn't walk properly.  Life has a strange way of catching up with us.  I moan and groan about the terrible treatment I've had, but on the way, like you, there are these individuals who turn your life around.  This consultant may or may not have the answer to your problems, but the referral has opened new doors.  For me without the intervention of this occupational health doctor, I would to date be permanently lost to the medical system.  Destiny works in unexpected ways.