Fast progression and both limb and bulbar onset?

[Androidlll]

Hello everyone. First of all I just want to thank those who are doing their best and taking their precious time to answer questions from people like me!

I developed quite a bit symptoms so Tlthis post might be a bit long.

I am 21M and started to develop symptoms this mid June. At first it was very minor paresthesia on my right side (dominant side, from toe to shoulder) of the body, like general fatigue and weird feelings when walking or running. If I were to do any workout, my right side would shake uncontrollably whereas my left side is very stable and calm.

Fast forward 1 month later to July 20, I had developed full-blown whole body twitching, many are on my right feet, calf, bicep and shoulde. Then my right side is getting worse with more extreme fatigue and right foot has a strong intention to drag when walking, though it still has the strength to do calf lift and toes lift (noticeably weaker than left side tho). Also there are aches, buzzing, and internal tensions within all of my right side muscles. Right leg, arm and chest became noticeably weaker and thinner (atrophy I assume) than my left. Merely 5 days later around July 25, the back of my tongue became incredibly stiff (or just the muscles down my throat) and slight post nasal drip and hoarse voice started to show up, swallowing now came with really strange sensations, and it made swallowing just a bit harder than before... I couldn't stand it anymore so I went to get a full body EMG test on July 29, which came back all normal! Also had a few neurologists checked on me the same day as well and found that I have slight weakness when raising my arms in front of me and every other strength & reflex looked good. I got prescribed with Vitamin B and Mecobalamin tablets and asked to come back 1 week or a few weeks later.

However just today the back of my tongue is more tense than ever and almost like a cramp and it lasts for hours. I literally couldn't speak because my voice would just be very slurred, hoarse, and nasal. Upon inspection, I believe my tongue is smaller than like 10 days ago? I looked this up and found this is called "velopharyngeal dysfunction" which is associated with ALS a lot of time... Just not a good relief for me. My twitching still persists and I am also having nerve pain in my wrists and fingers like they are over stretched. Tremors also present on both hands. When I flex my biceps, they would shake a lot more and feel softer than before.I don't know what to do now, like I am supposed to believe the EMG is correct which would be great news, but my symptoms show no sign of regression and even present as both limb and bulbar, which got me incredibly worried. I attached my EMG results (partially in Chinese) down below. Any suggestions or advice would be appreciated, thanks!

 

[Nikki J]

Not ALS. It didn’t sound like it and the emg confirms it.

is the narrative google translated? just wondering because it is very strange. however the charts are clear and as you said all normal.
my only suggestion is to work with your doctors and ignore Dr Google. If he sent you here he was wrong.

good luck in finding answers

 

[Androidlll]

Yeah they were Google translated using the picture to text function. Very bad translation indeed, a bit funny as well I personally couldn't find many other diseases that match my symptoms. I did read the sticker post and I didn't seem to match all of my symptoms to a single disease, well unless I have multiple diseases from that list, then that would solve the mystery behind my symptoms. Forgot to mention that my right knee is on the edge of buckling if I try anything remotely intense.

 

[lgelb]

At 21, the most likely culprit is your mind -- not necessarily a mental disorder, just the way once one little thing comes up, everything can seem more than it is. (21 is also an age where things can seem better than they are, why we are seeing so much congregation leading to more Covid cases, in bars, festivals, etc. -- please be safe.) I would also ask your doc to evaluate you for allergies, GERD and sleep disorders.

Best,
Laurie

 

[Androidlll]

Hello, just a quick symptoms update. I tried to ignoe what was going on and never come back here but my symptoms just keep progressing... My tongue/throat/jaw tightness (or tension) are getting really bad, it feels like someone is literally choking on me and it lasts HOURS once a day or a few days. It makes chewing, swallowing and even breathing much more difficult, and I feel like I cannot feel my swallow and some food is stuck on my throat. Also my voice becomes more hoarse and less loud due to the tightness. I don't know if this is considered spasm but it is definitely abnormal to have these painful feelings. I still have post nasal drip and random tensions showing up on my cheek. Besides my throat, both of my hands are getting clumsier and stiffer (I can still move them fine just with less fine motor control and a lot of stiffness), and my thumbs are getting flatter (like they are supposed to be a bit curled when relaxed but now they are just straight). Strength is noticeably weaker than 2 weeks ago. Also I found I can induce thumb spasm by pressing my thumbs against the knuckles of the index fingers. My left leg is also acting up, like gait is different from what it used to be, I cannot tell it visually but it feel like some muscle isn't working and is being compensated by another muscle. Twitching is still EVERYWHERE, from toe to head. I am trying to get back to my normal life but this seems to start to affect my quality of life... My main insurance isn't starting until 2 months from now and I don't want to offcially find out what is going on but it is getting worse every single day... Sorry about my long complains above, I don't know where else I can share what I am going through. I have university starting next month and I am just so scared right now

 

[Bestfriends14]

I'm sorry you are going through such a stressful and scary time. With university starting in the midst of a pandemic, things are still very much up in the air and unknown. That must be incredibly frightening. These are big contributers to a body reacting to stress, such as the symptoms you are describing. Unfortunately, this is not the place to come to air your fears or grievances. The members here are terminally ill and their caregivers run ragged. You do not have ALS and your lack of symptoms, clean clinical exam, and clean EMG back this up.

Where should you go with your fears? A counselor, your parents, or your doctor. Coming here, however, simply will not get you anywhere. You are not, I repeat, are not describing ALS.

Best of luck to you and please stay safe

 

[Androidlll]

<quoted text removed>

Thanks Best! I fully understand that many people on this forum are suffering from this terrible disease and I have true & full respect to them and their caregivers. I have no idea how you guys are able to handle such devastation... With all the technological advancements we are having, ALS is still terminally fatal & debilitating and I just can't imagine it happening to anybody. One possible hope I was able to find is Neurolink with the possibility to implant high density tiny electrodes to restore motor functions... With my case, I haven't talked to anyone about it except the neurologists I saw, I am just unable to open such topic with anybody else. I will try to keep myself physically and mentally healthy... I have been taking all kinds of supplement in the past weeks and unsure if they worked. Anyway, I will report back if anything is worth mentioning. Thanks!

 

[lgelb]

Scattershot supplements often do more harm than good, as the body relies on a very complex synergy of chemicals for its function. If meeting with a counselor is a scary thought, why not try online therapy? You do not even need to use video; there are many platforms where you can meet via voice or text.

You can best serve the cause by enjoying the life that others here do not have, while contributing time or money to others less fortunate, as you are able.

Best,
Laurie

 

[Androidlll]

Update. My time is limited... Went to a neuro today and she listened to all my symptoms and did all the clinical tests there are, and she said ALS can't be ruled out and adviced me to go to another city for more consultings since ALS is like an alien virus in my city. Just a few hours before now, I was on an ambulance because I couldn't breath and my whole body turned into a spasm, my hands and legs are just all forcefully curled and fell to the ground... My oxygen level dropped to 70% and heart beat was over 160. It felt like I was about to die right there. I am in the ER now and I still can't breathe well enough without an oxygen mask...

 

[Nikki J]

Sorry to hear that. It still doesn’t sound like ALS Strongly suggest right now you log off searching old threads and concentrate on getting better. Good luck

 

[Bestfriends14]

It sounds like you are having a panic attack. When you have a panic attack, your body shuts down as a means of protection. Therefore, mellowdramatic statements like "my time is limited", is unhealthy and counterproductive. You don't evidence ALS. Period. I'm sorry your doctor said what he/she said, but that absolutely does not mean you have this disease. Your lack of symptoms confirm this.

Please take Nikki's advice and concentrate on getting well, both physically and mentally. You have choice to do so. You can sit and fret, or you can choose to live. That's up to you.

 

[Androidlll]

Thank you all for the kind words and I truly hope you are right. I just can't ignore what is currently happening to my bdoy. I lost almost 10 lbs in the past month despite having higher than average daily diet, I am now very a skinny guy (was always 127lbs at 5'11, now less than 120). My muscles are almost nonexistent, lifting legs and arms are like having dumbbells on them. Also have concerning reduced reflex for gag, sneeze, arms, and legs. Swallowing food is almost like pushing things down from the cliff with no feeling on the throat, and hopefully I am not aspirating. Hands, toes and tongue dexterity and strength are nowhere as before. I can still function and walk but with extreme effort. Twitching comes in waves and are very distracting. I will be meeting another neuro tomorrow and helpful he will get me on the right track.

 

[affected]

So sorry you are going through this. However you have had a huge number of very experienced people here tell you this is not ALS. Please let us know the final diagnosis, but that's all we can do I'm afraid.
I can see this is quite frightening and I hope the doctors can help you quickly. We would never say you should ignore what is happening, we can only say, whatever it is, it is not ALS and that's all we deal with here. All the very best.

 

[Clearwater AL]

AndriodIII, you've not started your own Thread but have only chimed
in on others but, you did reply this...

Had a full body EMG at end of July which was surprisingly all normal

As Affected wrote above " However you have had a huge number of very experienced
people here tell you this is not ALS."

So, you're apparently going for a second opinion because you don't believe the first
and the very experienced ALS members here.

If you reply again, please wait until you have a copy of the EMG (if the next Neuro
decides to go that far) and post the Summary/Conclusion that will be at the
bottom of the report. Again, if another EMG is done.

Until then... there's not anything more that could be accomplished here.

PS. Something interesting you posted....

" I am in the ER now and I still can't breathe well enough without an oxygen mask...

But you were able and thought to post on the Forum from your phone. In the ER...?
Just saying... in that circumstance that would have been the last thing on my mind.

 

[Androidlll]

Hello, I coming back with some updates. To clarify about the oxygen mask, I was having a hard time breathing normally after the body-wide spasm(even my lungs, like they are contracted and locked and I couldn't push air inside) so the nurse put me on pure-oxygen mask (still need to breath myself but a lot less effort), I was on it for the following 6 hours where I slowly recovered to breath without the mask. Yes indeed in the middle of all these I sent my previous post to this thread while sleeping on the hospital bed...I got my 2nd EMG results which was done a little over one week ago. In conclusion, they found nothing abnormal, like literally none. I actually had a third EMG yesterday in a different city (done by neurologist's assistant) and she told me on the site there is nothing wrong... Not even fasciculations are detected even I twitch 24/7 nonstop. My neuros are just really baffled, since they have confirmed atrophies on my calves, knees, thighs, chest, hands and arms without clinical weakness yet (they literally said "someone healthy is not supposed to have muscle loss like this" to their colleagues when checking me out). They found absolutely no brisk flexes or any UMN signs, and all they found was reduced reflex on both of my arms and reduced gag reflex. No improvement on symptoms and I am feeling bit worse day by day, more heaviness on limbs, swallowing getting shallower, tongue gets thinner and tired quickly when speaking and eating (I beatbox and my tongue was a lot thicker and enduring!) . No one knows what is wrong with me but they all admit there is something seriously wrong. Can my EMGs be done too early (1-3 months after onset)? Only LMN signs but clear EMGs are just the most confusing thing. I really need a correct & firm diagnosis of anything and start treatment early, because watching my body deteriorating at 21 for no apparent reason is just too wrecking.