So, here I am again.
As promised, a report back from my appointment three weeks ago at the neuro, in France. It was a professor specialized in ALS, very empathic, very patient. He did what seemed to me a very thorough neuro examination, a lot of tap tap and strength tests everywhere, including my jaw and my back. Lasted a good 10 mns only with tests, then he told me he's sure i don't have ALS. He was angry, because a doctor neuro in Germany told me that als could not be excluded for sure, while according to him a good clinical examination can exclude ALS, without needing all the "technology" (emg). Lol, he's an old doctor so a bit old school but I think that he's right, clinic is very important in médecine and probably even more in neurology. Still, he asked me to come back for an EMG, I have an appointment for the 20th December. He pointed out that according to my mri I had a very straight and bad back, and that I need to exercise more. Ok, fair enough.
So I walked out of his office happier than ever promised myself not to worry again and started to ignore all the fasciculation. But.. There's always a but...I can't ignore what has become a rather very disabling symptom for me lately : it's very, very tiring for me to speak. It hurts my tongue, i't s à huge effort than I have to make. To the point that I'm not talking much anymore, my colleagues at work and boyfriend both noticed and asked me. When I talk, people make repeat me bevause I don't pronounce well things. My tongue burns, it feels to big for my mouth, and... It fasciculates like crazy. Here again, I showed it to my boyfriend who was a bit chocked, and it's also a little atrophied on the side. In addition to this, I have the swallowing problem that started 3 weeks ago. My face sometimes twitches and my lips feel like a bit numb at times. This makes me very sad. And all in all, almost depressed.
I saw another doctor yesterday, not a neuro, who did not even look at my tongue and prescribed a lot of blood tests but said at the same time that it is likely they will show nothing.
To be honest, I'm still a bit anxious about ALS and bulbar onset, because my problem with speaking is not only perceived by me, but also by others. So any insight on this would be very, very much appreciated. Then , I am well aware that this is not a general health forum and anxiety forum, but if someone has already had or heard about this Symptome of tongue aching, difficulty to speak and found a reason... I would be grateful.
I know that pain isn't the first symptôm in als , but really the fasciculations are impressive and so is the difficulty to speak. The doctor three weeks ago gave a anti anxiety pills, which made me less anxious about als but did not resolve any of the symptom. The only thing that helped a bit was the osteopath who was able to take out the big lump in the throat had by cracking a few upper vertebra.
I cannot thank you more for your help, people affected by als directly or indirectly. I 've seen lately that a lot of new posts in this section have been published, and you keep answering in a very patient and careful manner. Thank you for your precious time and sorry in advance for coming back with another fear. I really tried objectively not to worry anymore after the neuro exam, but this new and increasing symptom is hard to cope with.
Thank you so much, have a nice weekend everyone