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New here, have been lurking for about a year, however. 38 year old male, no health problems prior to the one I'm going through at the moment:

My symptoms started as weakness during long typing sessions in Dec 2010, and until Jun 2011 presented as something you would expect in CTS (wrist drop, cramps when turning the wrist downwards). In June 2011, fasciculations started simultaneously in both hands, arms & shoulders and have continued ever since.

By August 2011 I had trouble using my left hand (loss of finger movement & wrist straightening).

The situation developed quite slowly - thenar atrophy became obvious around March 2012 without much loss of function as compared to the situation in September 2011. By that time the right hand had remained fully operational in spite of continuos fasciculations. Since June 2012, the strength in the right wrist and thumb have clearly started to decrease. Can't hold a power drill with one hand any more etc.

I had my first EMG & NCV in June 2012. Widespread unit loss in both upper extremities, fasciculations, polyphasy. NCV normal, but distal latencies in hand motor nerves prolonged. No conduction blocks found. Diagnosis "root level damage, MND can't be ruled out". In addition to hands, one leg was tested with normal EMG. Clinical tests documented the obvious weakness. Reflexes & Babinski were inconclusive. In addition to the weakness, there's a point of pain under my left shoulder blade, and this appears to have some sort of connection to overloading the weak left wrist ("radiating pain").

MRI in July 2012 came out normal, as did the bloodworks. A repeat, more thorough EMG was done in August 2012, and both legs, abdomen, neck & tongue came out clean. For the arms, similar outcome to the previous EMG. Distal latencies in hands clearly prolonged (around 5 ms), NCV normal, no conduction blocks found. There are occasional fasciculations in the legs too, but nothing like it has been in the arms for the last year or so, and none were caught during the EMG.

According to the EMG specialist, this is a "motor neurone disorder" which he however thinks "does not quite smell like ALS", mainly since it is still purely limited to the hands more than a year after the onset of obvious clinical symptoms. The chief neurologist, on the other hand, concluded this is "probable onset of ALS". I went through a spinal tap last Tuesday and am still waiting for the results. If nothing comes out, there will probably be nothing else than a follow-up later in the fall to see if the symptoms have started to spread. I'm thinking of suggesting IVIg to rule out MMN, if they don't come up with that by themselves.

I wanted to ask, if somebody else has experience on for how long the EMG can be clean in other regions after clear loss of function in hands (I'm having real hard time typing this), and if the prolonged distal latencies are typical of ALS.
 

Tokahfang

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I can't answer either of your specific questions, but...

MND's aren't as simple as "ALS or bust!". If you hang around you'll see people with descriptions like "other MND" or "LMN-something", etc. They went through the full diagnostic process, something is happening to the motor neurons, but it isn't something that fits into a clear category we've got a name for yet.

Prognostically, if you haven't had spread to other regions yet, that's great. Fast spreading lower motor neuron damage is what is scary about ALS, so even if you get an ALS label at some point in the process, you are already in a better situation than a standard PALS would be.

Your docs seem pretty decent, let them work out the names. In the meantime, you should probably set to working on how to live with and work around the disability you have now. If you do end up with region spread, you can worry about prognosis and what your future is like again then. And maybe it might be time to let loose and live a little more.
 

Inventor

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Thanks, you made a good point.

I suppose the main reason for my anxiety is uncertainty whether or not it was right decision to give the almost-abandoned dream of having a child one more chance in spite of these worrying symptoms. I spent nights pondering about what to do, and finally decided that it would be a greater wrong to give up the last hope for this reason.

And, to somewhat of a surprise to both of us, we're now expecting our first-born early next year. It's the greatest news I could have hoped for, but I still can't help getting feelings of anxiety about how my wife and the child will get on if this turns out bad, and whether I have made the right decisions.

But on second thought, based on the information I had then, I would certainly make the same decisions again, so I guess you're right there's no point in trying to predict the unpredictable, but rather concentrate on what we have now and to make the most of it.
 

HelenL

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Ask any PALS here who has made that decision, and none of them regret it, and some have lived a long time probably because of it. Congratulations on becoming a Dad!
 

Ms. Pie

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Congratulations!
 

momap53

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Congrats to you both!
 

notgivnup

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Congratulations on the comming baby! Hope they get things straightened out soon for you. Wishing for the Best for you. {HUG}
 

ottawa girl

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Thanks, you made a good point.



And, to somewhat of a surprise to both of us, we're now expecting our first-born early next year. It's the greatest news I could have hoped for, but I still can't help getting feelings of anxiety about how my wife and the child will get on if this turns out bad, and whether I have made the right decisions.



WOOHOO! Congratulations! That's the best news I've ever read on this forum. WOW!:D
 

panguinjen

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Babies are always good! You will see that every new parent worries about the future, that is your job as a dad. You will be a great parent as you will cherish each day you have!

Jen
 

Inventor

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Finally got the results from the spinal tap. Otherwise normal, but proteins slightly elevated (0.61) and borderline positive for Lyme IgG antibodies. The statement was, however, that this is "probably a meaningless finding".

Weakness is slowly progressing in the right hand, with a similar pain in the shoulder blade as there's been on the left side for the last year.

CT scan and repeated Lyme test from the serum (+ ganglioside antibodies) next.
 

Luke

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Hi,

I have the same symptoms in my hands with the same EMG findings as you've described. However, because EMG findings elsewhere in my body point toward a myopathic - and not neurogenic - cause of my issues, the working theory is that I have some kind of muscle disease (myopathy) and not a motor neuron disease. I'm not trying to compare apples to oranges - we sound like fairly different cases, over all, but for what it's worth, there's always hope that it could be something other than an MND. Best wishes.
 

Inventor

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The slight positive for Lyme IgG antibodies in both blood and spinal fluid, combined with the constant pain in the shoulder blade around the axillary nerve might in my view point away from MND, but none of the doctors I've met with so far have set diagnostic significance on these findings. I'm still thinking if it would be worthwhile to pay a visit to a specialist Lyme clinic to get a more thorough analysis of the borrelia situation in my system.
 

Inventor

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Decided to pay a visit to a Lyme clinic in Norway (there are none here in Finland) to get that possibility thoroughly examined. Tests scheduled on Oct 8. During the last few weeks, I've lost the functioning also in the right hand to a degree where I can't properly write to a whiteboard, as I noted today. Another new symptom is a very stiff neck that cracks like crazy and hurts badly when moving sideways in a backwards-tilted position. CT scan&repeat MRI next Friday. Still able to weld, if I can support the arms, but the angle grinder is getting tough to hold. Atrophy in the right hand seems to start from the small-finger side, unlike the left hand which startedfrom the thenar side.
 

notme

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A lot will depend on other test results. There are things that can affect just the arms that are t ALS. Your leg EMG was clear, right? They found weakness in your legs with a normal EMG?

Babinski is usually positive or neg. not sure what you mean by inconclusive?

Remember, it can only be ALS when it can't be anything else. Try to stay positive until you know something for sure.
 

Inventor

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No obvious weakness in the legs & clean EMG. I seem to have some issues with my left ankle though, tend to step "over it" as though it would not stop the movement as expected.

Regarding Babinski, I'm a bit too aware of what is being looked for and apparently able to consciously produce either effect.

Trying to keep positive & think of other things, but the constantly deteriorating hand function is a bit difficult to neglect.
 
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