I believe,it's ALS

[Passenger]

I'm 31 years old male and two and a half years ago started my journey to this health situation.
I visited 4 neuro doctor and excpet one who finded a little weaknes in one leg muscle (due to lack of exercise ,he said) all clinical tests was OK.

I had a clear brain and neck MRI and also clear bloodworks.
I had also two EMGs in two arms and legs :
The first one showed possible damage at interior horn but the doctors did not agree with the way of the guy in diagnostic center did it cause he didn't put me needles...So all the doctors told me that this EMG is useless.
The second one shows :
Notes : mild hypertonia - sparse large motor units in both both triceps.
Conclusion : EMG without abnormalities

All the neuros agree that i had some kind of anxious somatomoform disorder.

My mind is stuck on ALS and i never go to psychotherapist for this.

All these years my symptoms get worse and worse and right now i feel more weaker than ever,i have swallowing issues,slurred speech and my muscles are stiff and twitching even my facial and tongue,needles and pins,my neck shakes when i'm standing motionless and all these neuromuscular symptoms.
But the most worrying symptom for me is the shortness of breath,especially at night.

Today i have an appointment with my neuro again after two years.
If the clinical test will be clear should i worry for als or it is time to get psychotherapy?

Wish me luck...

 

[lgelb]

Luck. But you won't need it. I feel fairly certain that you do not have ALS. Weakness with atrophy would be apparent after two years, unless you were a very slow progressor, in which case you wouldn't be having breathing difficulties w/ fasics without them.

I would consider cognitive therapy, bodywork and/or a sleep aid unless significant neuro abnormalities are found. The mind is very powerful and can affect your body in all the ways you have described. I would think in Athens there would be a university center with practitioners who study the mind/body connection. Also, have you videoed yourself sleeping so you can see how your breathing really goes throughout the night? That might be reassuring for you and helpful to your clinicians. You might even have sleep apnea; poor sleep can lead to significant problems during the day.

All the best.

 

[Passenger]

Thank you for your response.

Ηow a doctor can diagnose atrophy? Clinically or with a test?

 

[Passenger]

Just arrived from neuro appointment...

My doctor has many pals and is experienced.
After 2 1/2 the official result is : Benign fasciculation syndrome.
In clinical tests i was too strong and my reflexes are better than before.
I will start sessions with expert of mind/body connection and continue this temporary life.

I would like to thank you for reading and be sure that all pals,allover the world,will be in my prayers for cure as soon as possible.
My thoughts are with you.

 

[MLP123]

I am not sure how to start a thread so I am praying someone can help me with some advice! Please respond. My symptoms started 5 years ago with a tongue twitch I could feel and scalloped tongue..upon exam I do have what appears to be some atrophy in my hands and ankles. I also had bodywide twitches. My tongue stopped so I just moved on..as 3 docs told me I was okay. So about 2 months ago while 9 months pregnant my tongue started again. I also have really bad teeth marks on my tongue and when I apply pressure to my tongue it spasms EVERYWHERE and I cant feel it. I have VERY brisk reflexes in both legs and a weird crawly sensation in both feel and up one leg at all times. I also have a constant fasiculation I cant feel on my foot that never stops. I get a heavy feeling very often in my left leg and arm. I twitch EVERYWHERE everyday it feels like popcorn under my skin. I also have where they tap your chin and your face twitches..My lips,face,legs,arms you name it its constant...Heres the thing I just had an EMG on both legs,arms,and one under my chin 2 weeks ago and my neuro says despite my symptoms its not ALS? I have been biting my mouth,and it feels like I chew and chew when I eat. PLEASE someone help as I am confused and dont know what to do..I have a six week old baby I have to take care of and my depression over this is taking over any advice would be great!

 

[MLP123]

I also have been drooling in my sleep and have actually choked a couple times!

 

[vickim]

It could be BFS and it is annoying but you can manage it, there are meds to help. You have had 3or 4 drs tell you it is not als. The depression you may be having could be postpartum and you should see a dr for that. You say this has been going on for 5 years? If it was als you would know it and be in a much worse state and definitely not having a baby. Congrats on that.

Worry and anxiety will make it all worse and then a newborn on top of that. If I were you I would see a dr and get some meds to help. There is no shame in it and it is a very brave thing to do. I hope it helps you move on and enjoy that new bundle of joy in your life.

 

[MLP123]

even with the atrophy,scalloped tongue,chewing issues,drain in my throat etc? I have seen many people here diagnosed with way less symptoms than me..I even have hyprreflexia in all for limbs! I am so scared

 

[vickim]

Then all you can do is keep going to different drs and see if they have different answers. At some point you have to believe them. Maybe a swallow study will tell something. Did the drs note the atrophy in the tongue? Anxiety can make you physically ill and cause serious problems. Only you can make the decision on what to do.

 

[MLP123]

My tongue is VERY scalloped,the dr said she thought I was clenching my teeth,but I am not. She didnt see my tongue twitches she wasnt interested,but mine twitches where I can feel it and with any pressure,or say I flick my tongue with my finger,it spasms for a few sec down both sides and the middle like worms and I cant feel it at all,my doc didnt see any of this. Also today I have been teitching lots in my face and have a weird numb like spot on my cheek..spit keeps getting in the sides of my mouth too