Is this ALS? An update.

I promise you. There is nothing else in this world I would rather do then to move on with my life and leave all this anxiety behind. But it's a fact. I could not read a bedtime story for my girls tonight cause I have no voice left. That is my reality. I met the throat doctor and she could not explain why this is happening. Just point out that my vocal cords are thin.

So I'm back to square one. Three month ago I felt in my body. Something is wrong with me. And I have tried to explain everything to myself that it's just stress and anxiety. I wished for nothing else. But here I am. And on Monday I just hope to god that my lungs are working...
 
Surely the ALS specialist who spent 40 minutes with you yesterday had ample opportunity to assess your voice. They would not have to say they were assessing it it would happen naturally as they interacted with you. If they had concerns about bulbar ALS they would certainly have said so.

Please let us know when you get the pft results and the doctor’s opinion of them
 
He was just a normal neurologist and not an als specialist. He never mentioned my voice. Just did the checkup.

I really would like to know. How can this progress so extremely fast. 5 days ago I could still sing my three octaves and almost had the normal loudness in my voice while talking. Then almost from one day till the other it's almost gone. The voice is now very quite, breathy and I can't sing more then maybe one octave in a low register. And I'm much more out of breath.

Can it be this fast with bulbar als?! You loose your voice like this over a night?!
 
No.
If you are seeing the ENT later this month, that will shed more light.
 
Hi again! So I have some updates.

Like I wrote before I was very scared after the first ENT doctor commented that my vocal cords looked thin. I asked for a second opinion and another doctor with more experience looked at the video of my throat and said she thinks the vocal cords look normal.

I also had a lung test done, spirometri. And it was normal. So I guess all my feeling of shortness of breath must have been psychological, or the test would have not been normal...

The neurologist I meet also did now find and pathological reflexes and just noted that they are all brisk bilaterally but said it's nothing to worry about. When I met him I had no visible twitching... And then I have not had any twitching for weeks.

I was more relaxed for a few days after this. I felt I was getting my life back. I started working some and my daughters got their normal happy dad with all the energy back.

My voice is still hoarse and I still get the short random pain in my throat now and then, and it also sounds crazy when I swallow. Loud clicks.

But I can live with this until the next meeting with the ent I have scheduled.

But then this night I was thrown to the ground again. I woke up and the back of my left thigh was twitching constantly! It did so the whole night and now this whole day, though I feel it more at rest. My left leg has always been my problem and for weeks I had vibrations in the leg and the calf is clearly smaller then my right, something the neurologist commented on, but said is within the normal grade of difference between muscles. But now it is my left thigh that constantly twitches. Where my smaller calf muscle is. I can't feel any difference in strength between my right and left leg. But I'm so afraid again. My questions are:

1. Would my calf be twitching if it actually is astrophy of the calf, or could it be that my thigh is twitching but the calf is the muscle affected? It's the back of my thigh so it's close to the calf.

2. If the left calf is smaller cause of als and atrophy, do you think it would be noticeable weaker by now? And do you think it would have become even more noticibly smaller after two months? That was when I first saw the difference between left and right calf and I dont think it's smaller then when I noticed it.

3. Would twitching in als be this local? It's a small location on the back of my thigh. And every time I've had twitching since everything started it's been very local.

4. Is my symtoms more als now that I have the twitching? I have my hoarse voice and weird throat. I am more tired then usual. I have som pains in my legs and thigh that come and goes, that smaller calf and now this local almost persistent twitching since more then 20 hours.

I have no one else to ask so I really appreciate any answer. It means the world to me! 🙏🏻
 
1. This is a very confusing question and indicates you are not reassured in any way by the information received here and by the various doctors you have seen. Clinical weakness is the hallmark symptom of ALS. If you are twitching and you do not have clinical weakness, this question is moot as the twitches have nothing to do with ALS.

2. Yes, and yes. So, again, absent and clinical weakness you are looking at something else.

3. Twitching absent clinical weakness points elsewhere.

4. If your doctors do not discern any concerning neurological symptoms, you must stop focusing on ALS and stop viewing everything that you are experiencing as if it may be ALS. You have been cleared of ALS. Yur focusing on ALS makes it harder for doctors to figure out what the issue may be.

If you have further questions, you need to return to your doctors and ask them what it may be, not just ask them to reassure you about ALS- that only limits the conversation and answers you would get.
 
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