Hello everyone read the stickies but would love some advice.

[Sunstorm]

Hello!
I appreciate everyone's time and hate to come under an umbrella of 'oh it's one of those!' But I do have genuine concern.

I've had very bizarre issues and some follow and some do not follow a 'general' path.

I noticed looking back foods I was used to all of a sudden gave me diarrhea and I started to get sleep jerks. No big deal just thought IT was unusual.

Then two months ago I felt slightly off balance for a week or so - I put it down to a viral infection but very unusual for me. Then noticed my foot slightly dragging, but only noticeable to me.

Then followed lots of symptoms - twitching, limbs flicking out, then I had facial cramps and throat cramps - only twice.

Since that time symptoms have progressed quickly with right side being weaker, feel tendons in arm etc, even muscle below little finger on the palm dents in. Really unusual.

Swallowing symptoms start and I get clicking when swallowing and burping after liquids with feeling of phlegm there vast majority of time.

It feels like the automatic function of swallowing has gone to the point That sleeping is weird. Either mouth open or it just doesn't work. Gag reflex is reduced too.

Sometimes face feels slightly tight but can still whistle etc.

Anyway.. Seen a couple of neuros they have no concern at all and I asked for emg / ncs not that they thought one was warranted. The emg came out clear and involved all limbs and one under the chin. My main concern is this enough for bulbar?

However, I'm now left in the situation that ive been told it's anxiety or over thinking and doesn't believe anything else physically is wrong.

I am in late twenties and very confused about this. No other medical worries ever and im being told this is over thinking but I can't see how random spasms etc. Clicking of throat / reduction of gag reflex etc can be.

So two neuro opinions and clinical exam along with clean emg so should I be totally relieved of my worries. However, I'm always reminded when I swallow and get a click or takes two swallows for one sip of water (residual water) that something's not right.

The neurologists know best so I want to listen to them and the emg is objective but would one needle under the chin in the tongue muscle even though I have no problems with speech or tongue be enough to show any bulbar involvement?

It's all a bit sad because I want to believe and move on but I struggle to accept concern can cause swallowing with clicking, gag reflex etc. However I'm twitching away and I'm not bothered cause they were emg'd.

Also. Two months seems very quick.

Any thoughts are much appreciated. Thank you.

 

[Nikki J]

Yes that under the chin needle was enough. Clean EMG cleared by two neuros and symptoms that don't sound like ALS. Too many for me to address but in ALS the gag is hyperactive so not reduced as you state twice. See your gp in followup and if they concur anxiety ask for help. Good luck

 

[Sunstorm]

Hi Nikki.
Thanks so much for your message. I'm often confused with lack of or hyper with reflex. I seem to read about both! Thank you.

I'm disappointed I didn't ask for more bulbar testing as my swallowing is so different to how it used to be sounding different but no tongue troubles at all. It's a weird one. The feeling of phlegm there continuously and the squelching noises too on swallows. It's bizarre.

Thanks again.

 

[affected]

sunstorm I'm happy to say that your symptoms sound nothing at all like bulbar ALS (my husband had this), not even remotely like it.

Your EMG tested the bulbar area, your doctors are telling you the findings, now you just need to start believing them rather than your imagination. I know that's hard to do, but now 2 members here are backing your doctors up.

All the best working with your doctors. Congratulations that this forum is not where you should be! We wish the same was true for us!

 

[Sunstorm]

Thank you - I guess my face feeling somewhat stiff is a concern along with my swallowing issue. Would only the one needle under the chin cover this? I've heard different opinions.

 

[GregK]

Would only the one needle under the chin cover this?

you have two replies saying 'yes'.

 

[Sunstorm]

Thank you. Okay another concern where I'd love anyone's input is shakeyness.
I've done my best to try and carry on my normal routine if this is anxiety based even though ive never suffered anxiety. I haven't been to the gym since this sterted and I used to be very fit. However ive developed this juddering when leaning over and shaking in legs when going down but not up stairs bizarrely. So I do 4 push ups and my body and arms is shaking like mad. Even though that my parents notice - this is very concerning. I asked my neuro and he said shakeyness would be a severe form of weakness that isn't possible to develop in 7 weeks.

My question is would the EMG be abnormal if I had weakness in muscles due the shaking if done in limbs, can it tell if your muscles are weaker than they should be?

I know no one can answer what it is - but I'm in a horrible situation where I know my body isn't right and the only answer im getting is anxiety yet I know in my hearts of hearts anxiety can't cause me to shake on a press up or judder when leaning over - the anxiety is being caused by neuros saying no problem and being at a loss when I ask about stuff and just saying anxiety - it's a really bad place as I know I can't keep asking the same questions.

 

[Atsugi]

Sunstorm, our most experienced members have given you good answers. It's time for you to investigate elsewhere. Good luck.

 

[Sunstorm]

Yes regarding the face problem which I really appreciate. But could anyone be so kind to enlighten me on the shakeyness. After attempting press ups which I can't do more than 5 for shaking. I now stretch my arms above my head and they are shaking. Would this weakness show up on an emg? I'm so confused in 7 weeks this can all be occurring? Any help would be greatly appreciated. Thank you.

 

[affected]

Sunstorm last answer from me on this thread.

Shakiness - not a symptom of ALS.

Now, please respect the people here are actually terminally ill and we have answered you all we can. Best wishes in working with doctors to find your solutions (ALS has none so start rejoicing you have something that does)

 

[Sunstorm]

Affected I really appreciate your help. Thank you. My neuro did say shakeyness may be muscle weakness but doubtful after 7 weeks. Sorry to come across worried but it's just facial spasm / tightness, swallowing etc. It's all scary stuff... But I really appreciate your time.

It feels like im at a dead end with finding out what's wrong now. As symptoms don't seem to go. I was hoping emg would resolve all of this but a normal one and still shaking away and a tight face - it's confusing! But again thank you for your time.

Anyone who has any thoughts to what avenue this could be - they're really appreciated.

 

[Sunstorm]

EMG curiosity

Hi All,

I'm in my late twenties and unfortunately things aren't great at the moment.

I have seen a couple of neuros but things are moving that fast that the ultimate answer is initially viral / now anxiety. However, I just think how things are how can it be?! From nothing to this in 8 weeks.

I shake alot when doing anything, I used to be an avid gym goer - I couldn't go now, My body shakes when doing two push ups this happens in lots of circumstances plus my right arm is more stringy and Palm on hand quivers. I also 'racket' when bending over or lowering arms it's all rigid movements.

On top of this I have bad swallowing problems with phlegm at back and that the swallowing process has changed, I cant swallow as quick, burp alot even After water and sleeping is a no go as its like my brains forgotten to automatically swallow! When I get two hours or so - salivas on the pillow and mouths open. I've also noticed slightly one side of my face when I smile doesn't symetrically rise and quivers a little with bottom lip.

Apart from the face quiver which I didn't notice until recently neuro has discounted everything else. I can't understand how stress would cause all of this - but he's the doctor.

EMG came out clear - great news, does anyone know if this would cover the body wide shaking when doing simple exertion? And if the EMG was placed in the hand and bicep would it cover all the forearm? As My palm muscle literally caves in but the needle was put on the opposite side.

One needle was placed under the chin, I guess this wouldn't cover the smile shakeyness? I was told it will check the tongue but no problems with the tongue as yet apart from twitching when exerted which isn't a problem.

Does anyone know if you fasiculate but you don't during the exam would it change their opinion if I twitched during it and it was read by the machine?

Would anyone have another EMG that focussed more on the bulbar area?

Thank you everyone!

 

[Sunstorm]

Re: EMG curiosity

Sorry. I meant to ask as well if I can feel less bulk on that forearm would the EMG placed on the hand and bicep cover 'weakness' or is that only done by clinical assessment? Thanks everyone! It's quite confusing to know if EMG would flag if you felt lack of muscle bulk etc

 

[skipper66]

My opinion is that this thread should be closed. Many people have already responded politely to this poster but he stubbornly refuses to accept their advice or those of his doctors. He isn't being respectful of others who are battling a terminal illness or support a loved one who does. Kim

 

[Atsugi]

Sunstorm, you continue to miss the point we're trying to make.

1. We know ALS really well. You don't have ALS.
2. We're not doctors, and can't help you with non-ALS issues.
3. The people on this forum have little time left in life and many of us find it very, very difficult to read and answer posts. We want to help others with ALS, but your posts are wasting the energies of people who are dealing with ALS
4. You must go elsewhere to seek your answers.

Good luck.