EMG suggestive of ALS

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Suliwaks

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Hello good day everyone.

I dont know if to classify myself as a new member or potential member. I have tried to stay off reading from the web but as you all can imagine it has been difficult. The reason why I am posting is because I am having some symptoms that doesn’t correlate with ALS. So I will start from the beginning

Sometime in December last year while seated i had a funny feeling. I looked up stroke and then dismissed it. two days later I tried to have intercourse with my partner but I noticed I could not maintain an erection. I had test for infection with came back with escheria coli. Treated but ED still present.

Then I noticed that my Two fingers have curled inwards and then came an almost severe back pain which is still present. As long as my back is not rested against something it pains or when i carry anything heavy.

I then I started noticing that I had lost grip on my hand, Then I noticed muscle weakness and cramp whiich has progressed and then atrophy Follwed in both hands. And i also got weaker on my legs

furthermore I lost coordination with my walking, i can stand on my right leg but not so much on my left.
Then the final two symptoms followed almost the same time; Muscle twitching (first shoulder, then arm and back and thighs) and difficulty talking. I can still eat food normally but I find it difficult with liquids.
And oh, my reflexes are all over the place

At first it was suggested that I might have cervical spondylolysis but the MRI was normal. It just noted Posterior prostration of c3 /c4 - c6/c7 disc material with indention on the theca was noted and also subtle Change in the spinal cord more prominent on T2 flair (hyperintense) at c3 -c5 level.

then my Csf showed low serrum for both igg and alb.
Then i had EMG and NCV which stated “highly suggestive of ALS”

I must point out that im 29yrs old from a developing country with a long history of misdiagnose (maybe i want to tell myself that for hope). I cant go out for better medical evaluation which is why im here.

i need your opinion. Thank you
Sorry it is abit lenghty but i wanted to be very detailed
 

lgelb

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The range of symptoms you report in 7-8 months' time would be quite unusual as an ALS onset. It is possible, of course. You also have a spine problem, perhaps not fully identified as yet, that may explain some of your issues. You might ask about physiotherapy with a therapist specializing in the spine, which, if you show improvement, would argue against MND. You might also consider a second opinion even at a spine center if there are not more centers that focus on neuromuscular disease. Some imaging (MRI, CT) is better done at certain institutions.

If you could post your NCV/EMG report with your details blacked out, we could be more helpful. I changed your status because you do not seem definitively diagnosed.

Best,
Laurie
 

Suliwaks

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Thank you laurie.
please find my EMG/NCV attached.
 

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lgelb

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It is difficult to comment on this. The EMG portion is not quantified as we are used to seeing here, and a limited number of regions were tested, so Dr. Alabi's tentative conclusion would not be accepted here without further study. From what I can gather, the findings are indeed concerning, but they might still relate either to a spine problem or MND. Certainly, we always recommend a second opinion before accepting any diagnosis of this kind. Even if you could have the EMG tracings and MRI images sent electronically to another university, and then perhaps do a consultation by video, that might be of value.
 

Nikki J

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It looks like your sternocleidomastoid emg was normal ( at least as far as I can tell). I would have expected abnormalities if ALS and bulbar symptoms ( swallowing). If you can get a more extensive emg done that would likely help clarify With the extent of your symptoms if MND it would show clearly

remote opinions are certainly done as Laurie says. Mass general where I go does them I know and I am sure lots of other places
 

Suliwaks

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Thank you for taking your time to reply. You cant understand my happiness that its not definite based on the emg. However, im from west africa and there arent many emg Or neuromuscular centres(infact thrres only one in my state). I would have been able to travel for more intensive check. I’d appreciate if you can recommend centers i can get in touch with via video call id appreciate. Thank you
 

Suliwaks

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Update:
I did go to see a neurologist, without doing any test, he clinically diagnosed MND. Even said theres no point traveling out for proper check up and put me on rizoule. (Like i said Above, im from africa and our health care is messed up)

based on what i have read on here, thats not Only how to diagnose.

however, since then my twitching has intensified in all four limbs. I know its maybe due to worry and stress but i have a few questions.

1. can you refer me to a mnd specialist centre where i can maybe send them my emg findings Nd talk to them online via video call as covid has restricted travelling!?
2. Should i be on the rizoule the neuro prescribed!?
3. what drug can i take to help with twitching!?
4. I read in the sticky bout failure. I dont fully understand because my index finger dts curled i cnt straighten it when i make a fist. But i can move the finger.

Sorry its abit long, and sorry for stressing y’ll. thank uou for taking the time out. God bless
 

Nikki J

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As long as you are having blood tests to watch your liver riluzole probably won’t hurt you.
some people find magnesium helps twitching though it is mostly for cramps. But you can learn to live with twitching after a while
there are places that do remote opinions certainly. I think there is a chance though they would say they couldn’t tell without a more extensive emg. You might want to look on the websites of the places you would go if travel were possible. I think many major medical centers have programs though sometimes only for certain clinical departments. I know Mass general does them but I think you should compare a few both for price and what they offer

i am sorry. It is hard enough without having the issue of not trusting your healthcare system.
 

Suliwaks

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Thank you for replying. And thank you for your suggestions.
i’d like to know more about the failure in the sticky (my 4th question). Sorry if im stressing you by asking too many questions, i dunno where else to turn to.
 

KimT

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I know how hard it is to be in your situation.

You need to find a way to let a doctor with knowledge of this disease to examine you.

I wish there were a way that we could assure you one way or another but we are not doctors and it's very frustrating when we cannot help you.

Do you have family who can help you see a neuromuscular doctor or at least call one to see if you can get in or if they can do a televisit?
 

affected

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Failure means you just simply can't do things - your muscles fail. You won't feel weaker, feel like things are getting harder, you will find that you simply can't do things no matter how you tell your body to respond. That is the hallmark of ALS.

I truly hope you can get some help by a specialist who knows how to diagnose exactly what is going on with you.
The twitching doesn't really mean anything, even if it is very annoying.
 

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