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mjkerkau

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I've been Googling like crazy, and I have some stuff that says spondylosis can indeed mimic ALS. My MRI brain was normal, but we found near cord impingement at the c6-c7 level with questionably blocked flow of the CSF. My neuro is sending me to a neurosurg. to get his opinion (2 of them actually) on if he thinks this could be the problem. The neuro isn't hanging his hat on it, but we're crossing fingers on both hands and hoping ;-)

Some of my thoughts on this:
..... the cord is just "crowded" at this point, not impinged. Why would it cause such bodywide symptoms?
...... can impingement (I'm not impinged yet) at this level be responsible for all the dizziness, vertigo, swallowing trouble/aspiration, facial muscle weakness and spasm, slurring of certain words, memory issues, word recall issues, tounge spasm/fasics.

Time will tell. These are the questions for the NS, but I have about 2 weeks before I can get in to see him, so I thought I'd throw this out here on the board and see if anyone had experience with these things.
BTW, I'm a nurse, so, sorry if I threw out too many medical terms. It's hard to think, and sometimes it's even HARDER to translate these things into "normal" speak :)
 
Yes, it can!

Do a search here of posts by tag0620, and you will be amazed at the journey they went through to get to the true answers. Also, I would contact her, (her name is Tracy). I know she would be willing to talk with you and give you more advice specific to your situation. I don't think you have enough posts on the forum to be able to private message her, but you can send her a visitor message and she can respond that way.

To find her, there are a couple of ways to search. But, I will just provide the link to her profile page.

ALS/MND Support Group Forums - View Profile: tag0620

If you click on the statistics tab on her profile page, you can read her posts.

Good luck to you, I hope you get some good answers soon.
 
Thank you Rose for your quick reply :). I appreciate your help!
I've read thru a few of the threads, but I don't think her particulars really answer my question. What I'm wondering is can the near impingement cause symptoms that are ABOVE the area of the problem, not just at it or below it.
 
I am an RN too. It makes things even more complicated, because we no some , but not enough. I very much doubt that cord impingement, especially when it has not quite happened yet,
would cause any problems like memory, word recall etc. More likely, as you already know to cause issues at or below the level. If the cord is not really being impinged at present , then it probably is not causing too many issues except pain when you move in such a way that it touchesthe cord momentarily. I had
the same problem as you, at C4 -C6 and had a fusion. Found out afterwards that it was not that causing my problems anyway, just the intermittent pain.
The weakness was in fact being caused by a motor neurone irregularity.
Some people on the forum have had the opposite as Rose mentioned, but others like me had the spinal issues fixed and found it was a red herring.

Not sure if you have had an EMG, but it is often the best test to indicate what is going on weakness wise,
Hope you get some answers. Just be a bit careful if you are offered surgery, that you have all the facts first. I should have seen a neurologist before the Neurosurgeon.(made no difference that I am married to one)

best of luck
Aly
 
Thanks Aly :)
I did have an EMG that was positive for MND....large action potentials and wide recruitment (hope I got those correct!) When I had the first visit with the neuro, he figured it was a CNS problem, so when he ran the EMG and got those results he wasn't surprised. He only tested one arm and one leg, since he was pretty sure that would be the result. We didn't check the spinal area, or the neck/head.
I had gone ahead and done a whole bunch of blood work to rule out the inflammatory diseases like Rheum. and Lupus.
 
Just thought I might as well add that when I met with the neuro the first time, he said I have upper and lower MND signs. Sensory normal.
 
MJ,

I'd hold out for some hope! I'd never accept a diagnosis of ALS without at least a very good 2nd opinion. Let's see what the next neuro has to say.
 
I have two neurosurgeons to see, and since I'm not doing much else (IE I can't work right now due to my symptoms) I went on the neurology site at the local teaching hospital here (Shands at the Univ. of FL for anyone who knows) and put in a request to see one of their neuros as well. If I'm gonna spend all my family's $$ on medical crap, might as well go whole hog, dontcha think? ;p
 
OMG it must be absolutely awful to have to spend money on medical stuff when you get sick. I really cant imagine it. Hope you don't have to wait too long. Maybe they will be especially nice cause you are an RN?
Aly
 
Hi There,
I'll just jump in with a quick note to let you know that Jim had BOTH UMN and LMN symptoms...but...his EMG did not show any denervation above the level of his injury...although he was/is having fasciculations in both of his arms which no one can explain.

His injuries were a break and stenosis at L5/S1...but the major problem was caused by a herniation at T6/T7 that was compressing his cord by 1/3 and went untreated for 2 1/2 years (perpetuated by the misdiagnosis)

Keep the hope!
Tracy
 
Thought I might send an update and ask a few questions.

So far, I've seen the neurosurgeon and he said right away, that there is no way what's going on in the c6-7 area is my prob.
So then my next trip was to see an ALS specialist, since a neuro nurse I know ran my symptoms and EMG info past two neuros and they both agreed I should see the ALS guy, they thought it was ALS. So I saw the guy, and I shouldn't post the words that came to mind after I left the office. Here are some of his findings:
Normal, non-pathological reflexes. Interesting since 4 other MD's have stated I have
4+ reflexes in all four ext. plus clonus.
The patient believes her forearms are atrophic. I observed no pathological atrophy.
Okay, people just randomly develop "holes" in the
forearms and other places? My physical therapist was
impressed with my atrophy, and he sees me all the
time and knows my usual muscle tone.
I just had to rant on those. I think he was pissy because my neuro nurse friend worked hard to get me seen pronto, otherwise my appt with the office was going to be Feb 5th. Here are some questions.........
And BTW, I see my real neuro on Jan 5th, so we'll get some of these questions addressed, I just want to see if anyone has any experience with these things:
** With whatever it is that's happening with me (not saying ALS, just whatever it is), when my weakness and then atrophy kicks in it tends to follow a pattern. The pattern is, I'll get cramping and twitching in the muscle mostly at night for 1-2 nights. Then I feel some weakness kick in, then I notice the atrophy. It always happens on the left side of the body first. So far the progression was the left forearm (inner) then right forearm (inner) then the triceps. Then the outer hips, left, then right, then inside the hips (like where you sit on a saddle) left, then right. Then hamstring area kicked in and finished, and now it's the calf muscles and tibialis anterior.
I'm trying to stretch everything several times per day since it's getting contractures.
Also see lots of small "dimples" at joints like my wrists,elbows, knees where the smaller support muscles are gone.

I know Wright might get on here and tell me to get a life and quit thinking so much, but this is what I do when I have to take a break from running the house, taking care of the kids, and still trying to do a little of what I used to do around the house. And reading books, and socializing. I'm the one who remodeled my whole house, chipped tile off half of the house floor and tiled the whole thing. Replaced sinks and faucets. Fixed a leaking wastewater PVC pipe. I have replaced almost every fan in my house. I've replaced lighting fixtures. I've built a fence out of 4x4's and boards for my garden. Tore out my master bath and hung backerboard by myself, fixed a broken toilet flange, had half of the walls tiled when I quit and couldn't do it anymore. I cut down trees, cut them up for firewood, and then split them by maul and sledgehammer after they check. I'm usually the one who gets up on the roof, cleans it, cleans the skylights, sprays for ants around them. I'm the one who gets in the attic twice per year to do a check for carpenter ants and terms, looks for leaks, checks the duct work, and the such. And I was doing all of this stuff right at the beginning of this year, 2010. Add to that working 3 12 hour shifts as a floor nurse. Even back in June of this year I tried to resume my walks and went 4.5 miles in 1.5 hrs (used to walk 9-10 miles in 2.5 hrs). Did it once, and the next time was when the spasticity and fatigue started in my legs.
So, I'm bored. I would love to use my sewing machine or pick up my cross stitch again, but my fine motor is not that good.
So, ALS or not, I'm just hoping I'll put this out there and someone will have some idea of what may be going on. I've been looking for other boards, but I've not had much luck. I found one for MDA, but it's not set up like this and not nearly as much info and users.
Thanks,
Michelle
 
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