Finally Saw The Neuro, Would Love Opinions...

[glenn gavanaugh]

excuse me if this seems jumbled, I'm going on like 3 hours of sleep, as I could barely close my eyes last night in fear and anticipation of this appointment. ha.

I finally went and saw the Neuro today (Ottawa).
She specializes in migraine headaches, so was kind of worried about how much she'd actually know about MND?
right off the bat she says, "24 is much too young to be worring about MND..."
then she had me give a list of problems that lead me to believe I had mnd, in chronological order.
she had me change into a robe, and then she basically did some quick tests - reflexes, babinski + strength. mind you, with the reflexes and babinski she just quickly did it without much effort - like she just a quick tap here, tap there, tap here, oh roll up your foot quickly with an instrument there - it was the quickest set of these tests I've ever had performed on me ha, ha. not knocking it, but she didn't even double check anything. also, she's like a 100 lb lady, I'm 200 lbs (in mostly belly fat...I'm not built as a big person - I'm regularly average weight (160lbs) and only 5'9...'til about 3 years ago) - she's telling me to push on her here and there to test strength... ah well.

said that my swallowing problems were most likely from anxiety.
didn't give me a reason for weakness (it is there), spasticity, or atrophy. she made it seem like if I've been feeling this way for a year, my hands would be so atrophied, it'd be VERY noticeable.
kept on saying (at least 5 times throughout the visit), "ALS is a walk-in diagnosis" - I said that I had been on these forums, read elsewhere, and I've understood it to the contrary - she said, "no. it's a walk-in diagnoses. trust me. If you had ALS, I'd know. I'd have to send you for an EMG to absolutely make sure. But I'd know from atrophy, reflexes, etc."

her conclusion: "you do not have ALS" - I still had her book me an EMG, which is not for another 3 months, then a follow up with her.

I have atrophy, weakness, stiffness + fascic's (which she saw at the elbow (it's almost constantly there), yet she was like slapping certain parts of my body to see if she could illicit them, or something like that?)

anyway. I want to trust her. While she obviously isn't qualified like an ALS specialist would be, she is a Neuro, and she said she has seen people with ALS in the past- I'm sure if she saw some sort of sign, she'd act a little worried, or she'd at least inform me. She wasn't even going to give me the EMG, I was the one who mentioned it to her.

anyway, I liked her. She seemed nice. But she seemed to fluff the possibility of me having MND right off the bat. tisk tisk.

Ultimate Question: Should I be relieved, or is this just the beginning of the journey? Because I hardly take anymore of this...
I mean, I'm going for the EMG. So that'll basically ultimately put it to rest. But I mean, in the meantime, should I still be worried, or what? I hate to bother people with this, but I was riding a pretty big HIGH earlier thinking of how this is over for me. Finally. But then it hit me: is this too soon for her to say, "absolutely not ALS" ha.

thanks a lot.

 

[glenn gavanaugh]

and by "feeling like this for a year" I mean noticed signs a year ago. It's been progressive since I first noticed. My hand weakness/stiffness/muscle loss was just noticeable maybe 2 months ago... for instance.

 

[BethU]

Glenn, I'd be relieved but still want a second opinion and an EMG. Her comment about ALS being a walk-in diagnosis (without tests?)indicates to me that you should be seeing an ALS expert. Not because I think you have ALS. but because an opinion like that is more convincing coming from someone who specializes in the field.

I believe in hanging onto hope, and she has given you good reason to hope ... But also, you need to feel confident that your situation has been completely evaluated, or you may have a nagging worry. There are so many ALS mimic diseases, when there is any question, the neuro should investigate them all.

Glad you asked for the EMG. That was smart. I think you're taking all the right steps to rule ALS out. Try not to worry (Ha!) ... so far you've got one educated opinion on "No ALS," so that's good!

 

[glenn gavanaugh]

Thanks for the reply, BethU.

Yeah, I'm glad I asked for the EMG too. It'll ultimately put my mind at rest.
I am kind of relieved that an actual Neuro has said that I don't have MND. She did perform reflex tests, strength, etc. All are okay. So that's good. I have to keep reminding myself of these facts, ha. But ya clearly she is no expert in the field of MND (she does have a pretty deep background in MS, though. I found that out later today... not that it is related to ALS, but still, it is a neuro-degenerative disease...so not just migraine...)
Hopefully the EMG comes back okay.

I'm probably way more likely to have something that mimics ALS than ALS. And I guess if I do have MND, it's a pretty slow progression - otherwise I'm sure this lady would have noticed something. anything.

but never say never.

but I guess for right now I should be happier and more confident than I was before, right.

anyhow. thanks a lot!

 

[awieleba]

Hey Glen~

feel good that everything checked out on the exam, that is a good thing. She may not be an als expert but she can identify any problems with reflexes or clonus, babinski, etc...infact it was my first regular neuro that said I have slight atrophy on my left hand and ordered a c-spine. Mind you my als specalist was not concerned about hand, even after looking at it and said it must be connective tissue loss and stuck a needle right into the thinning part and left in there for awhilw and moved it, showed no abnormalities, very strange. Hang in there...

 

[glenn gavanaugh]

thanks, awieleba.

the fact that babinski, reflexes, strength, coordination checked out... does make me feel good.

also, how long would it take to get into an ALS clinic? Here in Ontario I'm looking at either Hamilton or Toronto. I'd love to get in NOW ha. Clearly not going to be the case. But generally, how long? I should have had the Neuro in Ottawa book me, or refer me. Damn. Anyway...

 

[Al]

Hey Glen, just curious about why you went to Ottawa for a neuro when you live in suburbs of Toronto. You probably could have got into Sunnybrook with a referral.

AL.

 

[glenn gavanaugh]

I was told by my GP that I'd have to wait a long time to get into SunnyBrook, so first he'd book me into Ottawa, as she was available pretty quickly. And also, I was planning on moving to Ottawa - which isn't happening now.
But if I can get in to SunnyBrook in the near future, I'm going to ask for a referral on Monday.

 

[danielito]

Although ALS is not easy to confirm, I think is easy to say that something is not ALS.

A walk-in diag. for a negative is possible. But not for a possitive because the amount of conditions that look like ALS.

Do not worry too much. You already have seen the doctor.

 

[Sammantha]

Nuerologist, God love em!

Hi Glenn, sorry your going through this... When i first started out i had reduced reflexes and an abnormal EMG in every muscle that my doc and i noticed wasting in. Then a year later my reflexes were very brisk, with clonus. Then they said i had hypereflexia and babinski sign, but the kicker is, my EMG came back normal, well my third and fourth one, so says the ALS Clinic doc! Sooooo what i am trying to get at is if you can still use all your limbs/swallowing and breathing muscles you could have abnormal EMG"s, normal or abnormal reflexes, etc etc and they will NOT diagnose you until, you lose the ability to do something.. Believe me i know, i am starting to loose the ability to breathe and my ALS doc wants me to go to Hopkins because maybe they missed something, but i cannot afford my co pay to see my pulmonologist next week! If they have ruled out everything else, then there is no sense in seeing a neurologist until the time comes when they can no longer deny what is going on or have reasonable doubt. MY GP keeps aggravating ME about letting my ALS neuro know about my tests... When i finally did all i got was a referral to Hopkins! I am at the point where i am going to loose my house and cant get disability because it expired due to lack of diagnosis and he thinks he is doing me a favor by referring me there, when i cannot afford the trip! Don't look toward neuro's for answers, just deal with problems as they come, like breathing or swallowing or fatigue because they cant do anything anyways! It's pulmonlogists, and cardiologists, and therapists etc that do all the work! The neuro will just refer you to them after diagnosis anyways............ best wishes, sam

 

[glenn gavanaugh]

Hi Glenn, sorry your going through this... When i first started out i had reduced reflexes and an abnormal EMG in every muscle that my doc and i noticed wasting in. Then a year later my reflexes were very brisk, with clonus. Then they said i had hypereflexia and babinski sign, but the kicker is, my EMG came back normal, well my third and fourth one, so says the ALS Clinic doc! Sooooo what i am trying to get at is if you can still use all your limbs/swallowing and breathing muscles you could have abnormal EMG"s, normal or abnormal reflexes, etc etc and they will NOT diagnose you until, you lose the ability to do something.. Believe me i know, i am starting to loose the ability to breathe and my ALS doc wants me to go to Hopkins because maybe they missed something, but i cannot afford my co pay to see my pulmonologist next week! If they have ruled out everything else, then there is no sense in seeing a neurologist until the time comes when they can no longer deny what is going on or have reasonable doubt. MY GP keeps aggravating ME about letting my ALS neuro know about my tests... When i finally did all i got was a referral to Hopkins! I am at the point where i am going to loose my house and cant get disability because it expired due to lack of diagnosis and he thinks he is doing me a favor by referring me there, when i cannot afford the trip! Don't look toward neuro's for answers, just deal with problems as they come, like breathing or swallowing or fatigue because they cant do anything anyways! It's pulmonlogists, and cardiologists, and therapists etc that do all the work! The neuro will just refer you to them after diagnosis anyways............ best wishes, sam

ah. well, this is quite the journey. why even bother, hmmm? anyway, hopefully EMG provides answers. if not, screw it. done with this. tooooooooooooooooo stressful.
-Glenn.

P.S. - Clinic doc just noted neck atrophy tonite! yippy!

 

[planningguy]

Glen,

I think you've made a good start, and hopefully the EMG will tell you some more. You're probably heading into second opinion territory, and I would echo others in saying it should be a neuromuscular disease specialist. Chin up, and hopefully you'll get some answers soon.

Take care,

Robert

 

[glenn gavanaugh]

Thanks, Planningguy...

I am hoping that the EMG will come back clean. I personally do not think it will, but who knows. Thanks for the encouragement, though. I'll definitely post again after I receive my results. I'll still be reading the forum until then...