Symptoms since September 16... now atrophy

[Lionsoul]

Hi,

I am 37 year old now and I have symptoms since September 2016.
In July 2017 a neurologist diagnosed me with probably ALS (bulbar)... another specialized neurologist ruled out ALS in November 2017. He said, that the EMG was okay, no fasziculations...
but I have atrophy in my left hand, my left foot, my right arm, my left masseter and my tongue. While the first neurologist said, that I have clear fibrillations and tongue edge atrophy, the other nie said, that there is nothing. But he made no EMG of the tongue.
Please have a Look at the attached photos an let me know, what you think.
Thank you!

 

[lgelb]

We cannot "break the tie" using photos. You should visit a specialty center for that, with all your records.
Berlin, Essen and Jena, for example, have MND clinics.
I very much hope the second neuro was the correct one, of course, but you deserve a definitive diagnosis, whether MND or not, in any case.

Best,
Laurie

 

[Lionsoul]

Hi,

I am 37 year old now and I have symptoms since September 2016.
In July 2017 a neurologist diagnosed me with probably ALS (bulbar)... another specialized neurologist ruled out ALS in November 2017. He said, that the EMG was okay, no fasziculations...
but I have atrophy in my left hand, my left foot, my right arm, my left masseter and my tongue. While the first neurologist said, that I have clear fibrillations and tongue edge atrophy, the other nie said, that there is nothing. But he made no EMG of the tongue.
Please have a Look at the attached photos an let me know, what you think.
Thank you!

 

[ShiftKicker]

Mod note- merged threads. Lionsoul, if you could post anything further on this thread only. No need to start a new thread. Having it all in one place makes it easier for the members here to see the who picture. thank you

 

[Lkaibel]

i can’t see atrophy here but I am not a Doctor. I agree, you need to see an ALS specialist and “break the tie”. I’m sorry, this must be very difficult.

 

[swalker]

Pictures don't help us identify atrophy, so I will not comment on that.

What I can say is that even before being diagnosed I lost my ability to stick my tongue out as far as in your pictures. You should be very encouraged that you can stick it out so far.

I agree with others that you should work with your neurologist(s) to get a definitive diagnosis. It is odd that one said probable ALS and the other said definitely not ALS. Was either doctor a neuromuscular specialist?

I encourage you to seek out a third opinion from a neurologist specialising in neuromuscular diseases, and especially ALS.

Good luck.

Steve

 

[Lionsoul]

Hallo Steve,

both neurologists are spezialized in neuromuscular diseases. That‘s why I am so damn insecure.

 

[Lionsoul]

My symptoms an Story in detail:
Since 17 months I have neurological complaints.
It started with numbness on the left side of the face combined with atrophy of the masseter muscle and tingling in the left arm at the beginning of September 2016. After a period of dizziness and blurred vision and a pop of dry swallowing, my arms and legs fell asleep, it tingled left leg and left arm and muscle weakness turned on.

In February 2017, muscle aches and muscle burns were added, as well as a sense of stiffness. Since May 2017, muscle twitching and a globus feeling have also been added. A clarification of the complaints in neurology in May showed no landmark findings except for "no safe fasciculations of the tongue". MS was excluded.

In July, a neurologist at the ALS ambulance of the University of Bonn said after a physical examination, the suspected diagnosis of possible atypical motor neurone disease due to clear fibrillation of the tongue and tongue atrophy.

One week later in Frankfurt a more detailed EMG with fasciculations in the of the thumb Clinch, in the right upper arm and increased polyphasy rate in the tongue. But in summary no sure sign of neurogenic modification.

In November 2017 I was at the DKD Wiesbaden a clinic for diagnostics. The neurologist (Specialist for neuromuscular diaeases) saw no fibrillation of the tongue at rest and no signs of atrophy, normal reflexes and in the EMG of right calf, right thigh, right and left upper arm no fasciculations, only doublets (muscle weakness I have left, however). An EMG of the bulbar muscles he thought unnecessary. He "definitely" excluded an ALS and said: myalgia, benign fasciculation scamps syndrome, and suspected somatoform disorder. Completely contradictory to the suspected diagnosis in Bonn.

I am now very unsure which diagnosis I can believe.

My discomfort persists, in addition to that, the right side of the body muscles become thinner and atrophy of the left hand's hand muscles. Also, I have a feeling of stiffness and soreness in the tongue and in the middle of the tongue forms a kind of gorge. That's why I do not believe in a somatization disorder.

 

[Atsugi]

I see no ALS in all your posts.

All those symptoms are not pointing to ALS.

Stand on your toes, walk back and forth. Stand on your heels, walk back and forth. Look in the mirror and move your tongue up, down, left, right. Use your hands to button your shirt.

It doesn't matter if you feel twitches, tingling, numbness, or anything at all. In ALS, what matters is whether you can DO those things. If you can do them, then the brain is signaling your muscles OK. That's what matters.

ALS is about the signals from your brain to your muscles. If the signal goes through, it's not ALS.

 

[Lionsoul]

New pictures show the progressive athropy of my left hand.
The first picture is fron December. The Second from today.
The third pic is my right hand and the fourth my left one.
I am really concerned, behause my hand also Gurts and feels weak and stiff.

 

[affected]

what did your doctor say when you rushed there today and showed your hands?

 

[Lionsoul]

I‘m going to see my neurologist next Thursday.

 

[affected]

Best to save your questions for then because we can't say anything from vague photos, but a clinical examination will tell you much. It's not long to wait, spend your time wisely til then because you will never get this week back regardless and every day of life is worth living

 

[Lionsoul]

I am very grateful for these true words. I will do that. I know what fight you all have to fight here and with what feelings that must be connected. The more I appreciate it.