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Jaded-1

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one more thing.. I am in the early stages of ALS and I still had significant abnormality on my emg. You will have an abnormal EMG before any symptoms as the emg picks up on the pathalogical changes. You have to lose over 55% of your anterior horn cells prior to mnd weakness and atrophy. I was told that both my neuros.. even my generalist which even told me he suspected mnd after our visit.

You have been posting here for over 3 months and a clean emg after 3 months means you are ok.. The emg tech even if he is bad would likely stick a muscle or two that had innervation. Also... My neurologist told me they diagnose in the clinical setting and confirm diagnosis with emg in ALS... An abnormal emg without clinical findings does not mean you "might have als". There are many tests that need to be ran and a neuro that suspects even a chance you have ALS will set up a follow emg or follow up testing immediately.

So.. let me be clear.. Doctors feel free to chime in.... Your emg was clean after 3 months of your symptoms... go enjoy your life and be thankful you do not have this horrendous disease. You are wasting your time and creating uneeded anxiety posting in an ALS forum given your clean EMG.

I dont want to sound like a jerk, but it really bothers me that I cant even google useful information on ALS due to the number of people posting on multiple blogs about fasciculations and atrophy.
 

wright

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Hey Glenn

Please be careful when quoting members on this forum (me in this case). You claim I said, "It is absolutely not ALS." Those are not the words I used. What I said is that your EMG is not the EMG of someone with ALS. No one can make a diagnosis over the internet (it's difficult enough for physicians to do that who actually evaluate their patients). All I do is look at symptoms and render an opinion, albeit it an informed one using the knowledge I have.

Hang in there and be cautiously optimistic that they will determine what is happening with you soon and either start you on some treatment or tell you that you simply need to be patient for the healing process to run its course.

I'll leave you with this: given the story you have told and the symptoms you have, coupled with the results of your exams . . . it doesn't point toward ALS.

P.S. The reason your neuro didn't rule-out ALS completely is because she doesn't feel qualified to do so. That is why she is sending you to a neuromuscular specialist. Hang-on to the fact that she feels it isn't ALS at all.
 

crystalkk

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Jaded,

I'm sorry, did I miss something....You say that you are in early stages of ALS and have a diagnosed on your profile of 5/2009.
I'm really sorry if that is so. What were the abnormalities in your EMG? Has everything else been ruled out, it seems like you just started posting here with your symptoms.
 

glenn gavanaugh

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thanks for the responses.

-Jaded-1, I'm sorry about your condition. I wish you the best of luck...thanks for the insight.

I feel a lot better now, now that I've taken time to really digest what you are saying.
kind of redundant, but yeah the reason I was flippin' is because Dr. Wee stated that she's head of the Neuro-Muscular clinic for ALS/MND in Kingston (St. Mary's By The Lake, where I was EMG'd) - I mean, she's a physiatrist, not a neuro - but she has extensive experience with this disease - and she stated that she can't rule ALS out! But now I understand that she can't because she's not a qualified neuro... but just those words strung together, at the time, kind of a bummer... I was hoping this was the definitive point in the whole ordeal...

Regardless, you people have the real experience - and I take solace in this.
Sorry for twisting the wording around, Wright. I've just been really anxious lately. Mainly because my symptos are worsening.
Anyway. I'm still walking, talking, etc. I'm fine, in the overall sceme of things. So I'll just have to wait, patiently. I see the Neuro-Muscular Specialist sometime in the Fall ...and hopefully I can finagle a way in sooner than the end of Nov (jeez)... I wonder if I can get in sooner in SunnyBrooke or McMaster? I'll see.

God Bless, Ya'll.
 

GlenBrittle

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Hey Glenn,

Try Dr Pierre Bourque , Ottawa Civic Hospital . If you can get your GP to get a referral , I was in in 6 weeks.

Glen
 

Jaded-1

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I was diagnosed last week by a MND/AHD neuro (really 2 weeks ago, but I did not believe the neuro until my emg). I have been having autonomic dysfunction since December and have had rheuma and endocrin system issues ruled out. I am going to the ALS clinic in Chicago tomorrow for a second opinion. The tongue was the worse part of the emg and it appears to be bulbar onset.

I found the als forums after being diagnosed. I have no idea why people idle here who have not been diagnosed and have been given clean bill of health by a doctor and emg. The fact the person is at an ALS clinic performing EMGs, there is little chance they missed something. They are very good at the clinics and specifically are looking for ALS emg findings.


btw.. many Specialty MND neuros are also Psychiatrists/Physiatrists/etc. They tend to hold multiple board certifications due to overlap and coping mechanisms with these diseases. If they run an ALS clinic, then I would trust their opinion. Many EMG techs are not doctors, so this person could have been a MD and an emg tech. Regardless, they would not offer an opinion if they were not medically trained and being cleared by an ALS clinic should be cause for celebration..... not posting on the internet feeding your anxiety.
 

wright

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Jaded

You certainly sound like a voice of reason and of informed opinions and information. We are all saddened by your diagnosis but certainly welcome you with open arms. There is a wealth of information and support here, along with absolutely beautiful and caring people. Things can get a bit contentious and frustrating from time to time, but you will soon find that there is no better forum on the internet. Take care.
 

Everlast

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I was diagnosed last week by a MND/AHD neuro (really 2 weeks ago, but I did not believe the neuro until my emg). I have been having autonomic dysfunction since December and have had rheuma and endocrin system issues ruled out. I am going to the ALS clinic in Chicago tomorrow for a second opinion. The tongue was the worse part of the emg and it appears to be bulbar onset.

I found the als forums after being diagnosed. I have no idea why people idle here who have not been diagnosed and have been given clean bill of health by a doctor and emg. The fact the person is at an ALS clinic performing EMGs, there is little chance they missed something. They are very good at the clinics and specifically are looking for ALS emg findings.


btw.. many Specialty MND neuros are also Psychiatrists/Physiatrists/etc. They tend to hold multiple board certifications due to overlap and coping mechanisms with these diseases. If they run an ALS clinic, then I would trust their opinion. Many EMG techs are not doctors, so this person could have been a MD and an emg tech. Regardless, they would not offer an opinion if they were not medically trained and being cleared by an ALS clinic should be cause for celebration..... not posting on the internet feeding your anxiety.
Any way i could help ´i will be glad... i´m an electric engeniring, despite of beeing in portugal. Anything you want to talk or anything i could help just say. i will do my best helping other people.. as i can

regards
Jonh
 

glenn gavanaugh

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Hey Glenn,

Try Dr Pierre Bourque , Ottawa Civic Hospital . If you can get your GP to get a referral , I was in in 6 weeks.

Glen
that's pretty quick to get in. I'm going to ask my doc to get a referral.

I'm feeling weaker and weaker... Lately I've been choking in my sleep, waking up to it, it's a pretty awful feeling. still not convinced that this can't be ALS, but we'll see.
Thanks for the recommendation!
 
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