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Brice

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(Sorry i first posted it by error in the general feed)

Hello everyone, first of all thank you for everyone contributing to this forum because I find it quite helpful to read about individual experiences.
I am writing here as I have been experiencing different health problems for a while.

Being usually quite sporty, i have started experiencing a lot of fatigue since the beggining of 2018 in parallel of swallowing problems associated with muscular pain around the thyroid area. Exams with otolaryngologist were normal except for a kyst found only in september 2018 which has apparently no link with the symptoms. From January 2018 to January 2019, difficulties swallowing got worst and vary from time to time with sometime the voice getting fatigued and modified. This can be very exhausting because of the difficulty to constantly swallow and being unable to swallow correctly as though I didn't have the strength to do so.

Everything else started around September 2018. First of all, during work when I was writing, my right hand started to get really tired after writing for a few minutes. In the weeks that followed it started to get stiff, weakness inceased and i felt a lack of coordination, sometimes letting forks or spoons fall when i was eating. But i can feel this especially when writing on the computer and shampooing, where fingers are really weak and slow and don't respond normally.

Right now, weakness symptoms are present both in the right hand, arm and foot and leg. Stiffness is really present in the right hand and since a few days in the neck. Breathing has started getting quite a pain since 2 months and vary depending on the fatigue. The most difficult symptom to deal with is that at a single effort like walking for 30min or lifting stuff, muscle get really weak and start to shake at effort. It is getting really difficult to get out of home and doing whatever activity because everything seem exhausting. Whereas weakness is localised to the right side, there is a real global fatigue and it is difficult to deal on an everyday basis, especially when breathing is impacted which can be stressful.

A last symptom that started in December 2018 are fasciculations which i have never had previously and are present on the whole body but especially on both calves (all the time) and on biceps from times to times. It feels like worms under the skin 24/7 and is really disturbing.

The exams I have done are brain MRI, lumbar punction, which where both clean, event-related potencial ? by neurologist, and an EMG of the right leg alone (don't lnow why as symtoms are especially present in the arm/hand area) which I will post just underneath and was apparently okay even if it was done quite quickly (5min for 2 muscles)

Both weakness and fasciculations become a nightmare everyday and I don't know what to do, I also noticed my right wrist getting smaller as i have been reducing my watch strap twice since the two last months and it is still loose. I will also post a picture just underneath.

Here is a video of the fasciculation, which can be seen beginning at 1:55 :
https://youtu.be/T5bB58gsNeg

I am still 27 so I know ALS is quite rare at this age, and i have not been thinking at all about that until the weakness started becoming really diffcult to deal with and the fasciculations appeared and persist all day.

Thank you all for your responses.
 

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KarenNWendyn

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Have you seen a neurologist, and if so, did they find any evidence for weakness on your exam?

The normal EMG in a symptomatic region points away from ALS. It’s more helpful to us to post the summary of the EMG.

Pictures and videos of suspected atrophy and fasciculations are generally not helpful to us. Fasciculations are common, nonspecific, and meaningless.

There are many things that could be underlying your symptoms, with ALS being very unlikely based on your presentation.

But first step is to see a neurologist, and let him or her complete their evaluation. If the neurologist suspects ALS, then next step is a second opinion from a neuromuscular disease specialist, and they often like to do their own EMGs.

Please also read this. https://www.alsforums.com/forum/do-...-common-concerns-about-possible-symptoms.html
 

Brice

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Thank you Karen for this quick answer. The EMG summary is in french but it says overall that nerve conduction was normal, and also tested muscles in the right leg.

Alright for pictures and videos, I just didn't know if it would help or not.

The differents steps were to see a neurologist who did an MRI and a lumbar punction was done in hospital. He also did an Event-Related Potential (asleep for 30min with electrodes on arms toes and head) but he said he didn't see any fasciculations which seems weird as i have them all day long. But this is not really my main concern which is weakness which leads to muscles shaking after any small effort (and feeling bad for the following hours), even by just standing up, i can feel real weakness. And my right hand which becomes really stiff (which becomes impossible to move in the cold for example). The hand also becomes painfull when i force it to manipulate things.

No strength tests were done, only putting my arms and legs up which I still can obviously. My neurologist hasnt planned any of these and I don't know if it exists ?

Would an MRI of the hand or biopsy would be of any use ? Apparently the head MRI and lumbar punction eliminates all the rest (MS etc) as i have been said so I am a bit confused when I see the level of my symptoms that remain and increase overtime.

Thank you for the link, I had already looked previously to my post, there are interesting informations.

I forgot to mention the neurologist noticed a lot of tremor during the effort phase of the EMG which he diagnosed as probable essential tremor on the summary. I find this surprising considering the rest of the symptomalogy.. Also considering that all these symtoms appeared at the same time
 
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KarenNWendyn

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Neurologists can check strength quickly by asking you to do a few things and watching you move even if you don’t think that’s what they are doing.

It doesn’t sound like the neurologist you saw was concerned about ALS after evaluating you. Often, they will do a limited EMG just to make sure, and check additional muscles if they see anything suspicious. The fact he didn’t check other muscle areas is a good sign that he saw nothing worrisome.

What kind of follow up did he offer you? If none, you can always call him back stating that you have additional questions.

We can interpret the EMG summary even if it is in French.
 

Brice

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No actually he did not speak about ALS nor did I as I wasn't aware of it until recently when my symptoms increased. Actually at the beggining I wasn't espacially worried as I thought it would be temporary so I haven't really insisted towards him.

I was wondering if it required special EMGs to detect it because some people speak about ALS specialists ? Or if standard EMGs are sufficient. Also I don't understand how fasciculations could be seen on EMGs as the time capture only lasted for like a 2 seconds max ?

Also could other syndromes explain weekness tremor at effort and fasciculations with normal mri, punction, and emg outside of ALS ? As I became aware of it after understanding that it was considered after eliminating all other desease.

I don't know how it works in the US but in France it is very long between appointments, he proposed to see me again in April but since last month I have started feeling even worse because of breathing issues.

I have attached the summary of the EMG in French if ever it can help.

Thanks in advance
 
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ShiftKicker

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Brice, can you repost your emg image with the identifying information obscured? Thanks kindly.
 

Brice

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Of course, sorry, here is the summary:

I am concerned because if my swallowing symptoms are linked to the rest it began far before, in January of last year. But I don't know if normal neurologists do these types of EMGs.
To sumarise because my post is quite long, symptoms were:

January 2018:
Start of swallowing problems, pain around larynx
Cyclical fatigue while speaking

September 2018:
Weakness in right hand

December 2018:
Weakness in right leg, and right hand getting stiff
Fasciculations appeared in both calves
Heavy tremor after effort for any limb used during effort for the next few hours (arms or leg)
Short breath (sometimes difficult to deal with)

January 2019:
Increased fatigue, general fasciculations eventhough mainly in the calves.
Tongue pain after long speech (forgot to mention)
Right hand increasingly stiff and getting painful at use in the fingers.

Thanks
 

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Nikki J

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Do you have another chart ? The charts relate to the nerve conduction study that you posted


Pain and feeling is generally from something other than ALS.

An EMG is the same technique whether they are looking for ALS or something else. It isn’t a different test when an ALS specialist does it.

Generally the strength tests given are the doctor testing your strength against their strength. Example the doctor puts her hand on the sole of my foot and says push. I do and her hand doesn’t move even though she isn’t visibly resisting me. Clinical weakness but I don’t feel weak. If your neuro did not do this ( really?) your regular doctor could do this exam too.
 

KarenNWendyn

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The EMG was normal for the muscles tested.

Pain around larynx and pain in fingers points away from ALS.

And apparently no significant weakness noted on neurological exam.

ALS would be very unlikely based on this.

“Special EMGs” are not needed to diagnose ALS. Usually the way ALS is diagnosed is that a person sees neurologist because they can’t do certain functions (examples include inability to fasten a button or pull a tab or stand on toes, or that there is slurred speech that others notice). The neurologist would find weakness on exam and maybe abnormal increased reflexes and/ or spasticity. Neurologist would then obtain EMG which would show characteristic abnormalities consistent with acute and chronic denervation and reinnervation, and then do tests to rule out other conditions which could mimic ALS.

Generally it’s not necessary to suggest ALS to the neurologist.

So it looks like you’re clear. You obviously have something else going on, so I would recommend continuing to work with your neurologist or seek a second opinion if you’re not comfortable with that.
 

Brice

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Nikki:

The only other info present on the summary are the three muscle EMGs that I sent in the first post. Nothing else was present.

Pain is usually light and not at all a primary symptom.

The first I saw was a neuroradiologist, who did the IRM, and the second was a neurologist but he only did the EMG for which I had a prescription so no other tests. I just remembered that he asked me to lift the foot upside really strong for the EMG and it felt really painfull as lifting my foot is quite difficult (weak) and just after I had a strong cramp which never happens usually.

Karen:

Yes i don't have these problems right now only tremor when i use right side muscles and stiffness in the right hand but i can still open a bottle.

As i have read in the top page of the forum if the EMG is done when weakness is present it always points out ALS ? Because sometimes apparently some people get normal EMGs at the beggining so they were done before weekness i guess ?

I was asking the question about special EMGs because when i looked once at EMGs on internet they looked completely different from one to another so I thought there were different ways of doing them.


Thank you a lot for your responses, i'll try to seek a second opinion in that case eventhough the waiting lists can be very long here
 

Nikki J

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The people who report normal emgs and then get diagnosed are usually upper motor neuron onset / dominant. Upper motor neuron disease is detected by the doctor on clinical exam. These people are told there is something seriously wrong. Once their lower motor neurons become affected too it is seen in emgs
 

Brice

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Oh okay thank you for this fact Nikki.
And thank you for all of you helping on this forum.
 
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