Leading towards MND

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Re: Leading towards MND

Postby TwitchyDoc on March 26th, 2014, 2:55 am

ShawnW:

Explanation to your questiont (not saying it is TDenvers case): Reinnervation appears very early and is actually the reason why patients notice weakness when there is more than 50-80% motor neurons lost. The slower the denervation, the more damage can be compensated for by reinnervation. That is the reason why can have only 30% motor neurons remaining, fasciculations but subjectively there is no weakness - it is well compensated. But EMG will spot it easily.

The genioglossus muscle is inervated by the nervus hypoglossus (this is bulbar area), the nerve controlling the tongue movement and hence the finding here might explain your slurring. Chronic reinnervation would point to axonal loss.

Good thing is that no fibrillations were recorded, there is no mention of on-going denervation. While the EMG is concerning, I would not limit the diagnosis to MNDs only (but of course I am not a MND specialist).
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Re: Leading towards MND

Postby Gamindsoc1509 on March 26th, 2014, 3:29 am

Hey TDenver, you also mentioned cramping? How long have they been around for and how do they effect you? Are they extremely painful? Do they last long? Are they all over or in a specific muscle?

Also for the twitching, what is it pattern? Is it just body wide or in a specific place?

This does seem like a really odd presentation for MND to be quite honest. It's all over the place with symptoms that don't even seem related.
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Re: Leading towards MND

Postby TDenver on March 26th, 2014, 10:09 am

My wrists cramp when i bend them and my jaw when I yawn, thought neither are painful. My #1 complaint is fatigue, I can hardly stay awake, but sleeping is hard too ;) I feel like I've been hit by a train which is why I think it's an infection. I can still do everything physically, my muscles don't feel tired just my brain.
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Re: Leading towards MND

Postby wjjw on March 26th, 2014, 10:54 am

TDenver wrote:My wrists cramp when i bend them and my jaw when I yawn, thought neither are painful. My #1 complaint is fatigue, I can hardly stay awake, but sleeping is hard too ;) I feel like I've been hit by a train which is why I think it's an infection. I can still do everything physically, my muscles don't feel tired just my brain.

There was someone on this forum who had an abnormal emg and was told by I believe a neuromuscular specialist, that it was either mnd or a virus. Turns out it was a virus case.

viewtopic.php?f=5&t=5396&p=35953#p35953

If you search his first post you'll see the details of what he was told.

Cheers,
Bill
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Re: Leading towards MND

Postby TDenver on March 26th, 2014, 12:57 pm

Thanks. I have an appointment pending with a lyme specialist. I am not impressed with my neuro, last month he thought I was crazy for asking for an MRI, and this month he thinks I have als. Is extreme fatigue a symptom of ALS? I can't seem to find this anywhere?
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Re: Leading towards MND

Postby veryworried123 on March 26th, 2014, 1:10 pm

As far as I know no that is not a symptom
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Re: Leading towards MND

Postby Yuliasir on March 26th, 2014, 1:18 pm

As far as I know from at least one of MS affected persons, extreme fatigue is a sign of MS too. In ALS fatigue might be strong but usually in short time (weeks or so) it results in clear weakness etc. And it does not involve brainfog as far as I know, it is not a sleepiness - just a lack of willing to move or feeling that the move is extremely hard.
One of my blog freinds told me about her son who was 22 - the boy spent few month literally laying in bed, he was sleepy, he might be quite absent for 20 hours per day, he almost lost his university grade, and the family decided to bring him to doctros only when he lost a vision on one eye. he was promptly diagnosed with MS, got a treatment, and recovered completely, graduated from university and works now as a stage artist in the theater...

from your EMG one might probably decide that you have common issues with the ulnar nerve (who has not?). probably some trauma in toracic region and signs of once happened denervation now restoring in your glottal nerve. TwitchyDoc, who is a pathoneurologist and one of the best eductated in the field fellows here told you may have axonal loss in that nerve which may rather sound like local deficite for me (like after trauma or infection)...

I strongly support your idea to seek second opinion and maybe more specific second bulbar region EMG to see what is going on in your genioglossal muscle. Pseudobulbar syndrome is much frequent than bulbar ALS... by the way it also happens in MS and in several other autoimmune conditions, including Gullian Barre mentioned in the link in the above post (where the fellow twitcher had two denervation signs on EMG, lately reveresed.

as far as I understand the idea of ALS clinical picture, you still lack clear and specific evidences. So do not give up.
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Re: Leading towards MND

Postby TDenver on March 26th, 2014, 9:21 pm

thanks all. I have some more test results coming back tomorrow and will keep updates for those who are interested. Now I will try and get some sleep!
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Re: Leading towards MND

Postby raindog on March 27th, 2014, 3:46 pm

I'd be leaning towards getting a second opinion. My uncle had progressive bulbar palsy which is bulbar onset MND from diagnosis to death was 14 months. First symptoms were emotional liability ie he'd find bad news funny and good news sad. Drooling started , followed by soft slurred words and loss of grip. He was still able to walk a week or so before he died of respiratory failure at 52. Hope you get sorted soon as being in limbo is not ideal and the stress will be causing your initial symptoms to go into overdrive.

Got my fingers Xed for you for good measure :wink:
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Re: Leading towards MND

Postby TDenver on March 27th, 2014, 4:47 pm

No news other than I have low copper levels so we're running tests on that. Still waiting on my dna test to rule out Kennedy's. Also have an appointment with Mayo next week which is good. My Neuro is very thorough so some tests are still pending, and new ones always creeping up! Glad I have a good doc and family support system.
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Re: Leading towards MND

Postby ShawnW on March 27th, 2014, 4:57 pm

Thanks for the update. Stay strong.
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Re: Leading towards MND

Postby DoubleD on March 28th, 2014, 1:12 am

Ok jumping in on this with probably not much help

Couple things.

Had a buddy that started to waste away for years. ALS was the only thought However after getting treated with hemoglobin he has made a tremendous rebound,...your symptoms sound alike. Lots of facial issues. Turned out to be myasthenia gravis .. Have it tested

Met a guy at a gym who's son was waisting away with a virual infection that that left him bed ridden. It started in his face and moved all over. Slurred speech, other issues. Eventually he even had a trac to eat and breath, I did not get the name of the disease but again the son was pumped with hemoglobin and started to make a miraculous come back. He is now back to wok and fairly normal

Sorry no moreinfo. I will research it more

Kinda tired
Last edited by DoubleD on March 28th, 2014, 9:24 am, edited 4 times in total.
" By this all men will know that you are my diciples, if you love one another." John 13:35

10 years BFS
24/7 twitches all over
Cramps, tingling, buzzing, and a host of other weird things
Until you own your BFS, you will never disown als
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Re: Leading towards MND

Postby Yuliasir on March 28th, 2014, 3:26 am

Kennedy disease is one of the options, and it does not decerease longevity which is good of course...

as for low Cu... Didn't you have any recent visceral symptomes (pain in the belly, vomiting etc.)? Any signs of hepatitis (physical or analytical, like hepatic enzymes too high)? Low Cu in the serum might be associated with so called Wilson disease (toxic hepato-cerebral dystrophy due to disruption of Cu methabolism), it might have neurological presentations, but seems like not exactly like yours (more like tremor, agitation etc.), however it might include brain structure damages visible on MRI (not sure if your abnormal zones are consistent with those mentioned in Wikipedia article). On top of tremor, WD inculed loss of fascial mimical activity, loss of voice tone, etc. - again not exactly what you report.
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Re: Leading towards MND

Postby raindog on March 28th, 2014, 5:04 am

DoubleD wrote:Ok jumping in on this with probably not much help

Couple things.

Had a buddy that started to waist away for years. ALS was the only thou . However after getting treated with hemoglobin he has made a tremendous rebound,...his I symptoms sound alike. Lots of facial issues. Turned out to by mupysenthen gravies .. Have it tested

Met a guy at a gym who's son was waisting away with a virual infection that left him bed riddin did not get the name but again pumped with hemoglobin. Making a come back. Lost his voice and could not eat. Had a trac and everything. Now he is back to work! After treatment

Sorry no mor info. I will research it more

Kinda tired


Myasthenia gravis ?
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Re: Leading towards MND

Postby TDenver on March 28th, 2014, 9:17 am

I tested negative for Myasthenia gravis. There is a 10-15% change that even if you have it you will test negative, but that's where I am at with that.
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Re: Leading towards MND

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