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My question is the neurologist relies on an EMG for diagnosis?? I suspect I have bulbar onset mnd as my neck and jaw muscles feel weak along with swallowing issues. I don't have slurred speech yet though. I also wake often at night and feel sorry if breath among with an extremely dry mouth.
 
The neurologist relies on clinical presentation, blood testing, imaging and EMG. They do not go hunting for a particular disease, they use all forms of testing to eliminate possible diseases and to gain information about possible routes of investigation moving forward. If they can't find anything within their field of expertise, then it is not neurological. If they have ANY doubts, they continue with testing, continue observation or refer you on to the person they think will be able to identify the cause of symptoms.

It is important to understand that neurologists can pick up on even faint symptoms through strength testing, reflexes and observation on how you move, hold yourself and walk. EMGs can sometimes pick up on pathological nerve issues WELL before a patient is even aware of movement issues. If your emg is clear and the neurologist says they can't detect anything based on their in-person tests of your reflexes, strength and movement, there is nothing people here can say to reassure you if you don't believe the neurologist.

I am sorry you are frustrated and anxious about your health. However, there's not much more people here can do for you as it is a support group for people who have been diagnosed with, or are caring for someone with ALS. Work with your family doctor to get to the root of your symptoms and keep an open mind to what may be causing your worries.
 
Hi all just a follow up regarding my symptoms.
I am now at the point where swallowing is extremely difficult. My jaw muscle feels so weak.
I am sick of seeing doctors and not getting answers. I've seen 3 neurologists and had 2 emg rests done.
They have been clear. And now I'm told to see a rheumatologist? My twitching is getting worse and seems to increase with any strenuous activities.
My breathing is difficult especially at night I wake up after a couple of hours sleep and my mouth is so dry.
It feels like my body is shutting down.
I'm also considering getting life insurance die to having a 6yo daughter.
 
I see no mention of the pulmonary testing Eliot recommended. Did you ask for it? If you have swallowing issues a swallow study would appear to be indicated.
 
unfortunately sometimes the diagnostic process is a difficult one, it is good that your doctors are exploring all avenues. Referral to a rheumatologist is a logical move to investigate systemic or autoimmune causes. My route through diagnosis was the opposite one, I started off with rheumatology as I have autoimmune problems and was convinced my symptoms were related to these issues. It was only after my EMG came back indicative of mnd that my rheumy urgently transferred me to a neurologist.

Please be open with the diagnostic route your doctors wish to follow. i wish you good luck, and hope you get some resolution soon.

Wendy x
 
I haven't asked for a pulmonary test as yet. My breathing is okay during the day. Is just at night when I'm rested I cannot sleep for longer than 2 or three hours without waking. My neck muscles also feel weak.
I have lost 10 kilos over the last 3 months. I am not a large man and now weigh 74 kilos. (I am 5"11) I haven't been this light since I was 18.
 
Not sure what you mean swallowing is extremely difficult - did they do a modified barium swallow test? If there was a true swallow issue that is what they would have done.

Terrific - 2 clear EMGs, you seem to be missing the good news in this!

You feel like your body is shutting down...

Let me tell you how ALS is. My husband actually died of bulbar onset ALS. Yep it took months to diagnose, but that's because we were going to dentists and ENTs and facio-maxilliary surgeons and having teeth pulled and bone surgeries done.

Within 5 minutes of being seen by a speech pathologist he was diagnosed, and then it was immediately confirmed at one visit to an MND specialist neurologist.

What I will now explain is that he did NOT feel weak jaw muscles, and did NOT feel like his body was shutting down.

He FELT PERFECTLY NORMAL. This is the point - you are concentrating on all the stuff you feel, and have been to the experts and suspect you have bulbar onset while telling us you do not have the hallmark bulbar symptoms.

Give us all a break mate, buckle down and work with your doctors and let us know once a diagnosis is reached. Until then I don't see we have much we can add in.
 
No I haven't had a barium test performed. The swallowing issues begun after the two emg tests completed. It began predominantly on one side and now is both. If for example I eat bread it will feel like it's stuck in my throat and I try to swallow but it won't go down. I have not had any speech or tongue issues. The neurologist I have seen are not mnd specialist. They are neurologists yes but should I ask to see a mnd specialist? I say my body is shutting down because i can't do the things I normally would I used to play tennis excerise regularly etc etc. Now I get fatigued extremely easily. Something which haven't experienced before.
 
Downy,
A pulmonary function test ("breathing test") and swallowing test results would tell everyone objectively if you have a problem in either area. So I would get these done. You might also ask the pulmonologist to screen you for possible sleep apnea.

You've not presented any clear examples of something discrete and measurable that you did earlier this year but not now, at all. This, coupled with a clear EMG and neuro exam(s), pretty much rules out ALS. This is great news and so you are in the wrong place entirely, but do stop back by with the results of the tests mentioned, not further subjective symptoms. The latter will not elicit any additional information here.

Best,
Laurie
 
Contact the speech pathologist at your local hospital.
They can evaluate you for trouble swallowing.

ALS does not start with the swallowing issues that you report however, so you really are chasing this rather than being objectively diagnosed by someone who can measure.

Our PALS are actually experiencing their bodies literally shutting down. You might think about the reality they are facing when using expressions here. If we say this, we mean something completely different to what you are reporting.

All the best. As stated, unless you go back to health professionals and have test results to report, we really can't go any further with you.
 
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