Old 11-16-2018, 05:26 PM #16 (permalink)
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Default Re: please help, too many symptoms matching.

Please try again. Your post is not in moderation so you need to try again
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Old 11-17-2018, 07:19 AM #17 (permalink)
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Default Re: please help, too many symptoms matching.

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
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Old 11-17-2018, 01:02 PM #18 (permalink)
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Default Re: please help, too many symptoms matching.

Hi Shine
May I ask who it was that you saw at the Salpetriere !
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Old 11-17-2018, 01:08 PM #19 (permalink)
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Default Re: please help, too many symptoms matching.

Hello,
just adding thzt the neurologue said that different options were on the table : radiculopathy, chronic fatigue Syndrom. But that was before I developed the speech and swallow problem.
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Old 11-17-2018, 01:09 PM #20 (permalink)
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Default Re: please help, too many symptoms matching.

HP, I had not seen you message. I saw Prof. MEININGER.
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Old 11-17-2018, 01:10 PM #21 (permalink)
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Default Re: please help, too many symptoms matching.

If you were cleared of ALS by an ALS specialist, then you shouldn’t be worried about ALS. The EMG you have coming up should reassure you.

Any number or things could be affecting your speech. If you’re too panicked to wait until your EMG, then why not ask the ALS specialist about your concerns.

And yes, if your EMG tests the limbs and not the bulbar muscles, that would still be sufficient to rule out ALS as a cause of your speech difficulties.
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Old 11-17-2018, 01:15 PM #22 (permalink)
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Default Re: please help, too many symptoms matching.

Thank you, Karen

No, I'm not too panicked. I don't think I have ALS, I trust this doctor. But just not a 100% sure. I struggle to chase the bad thoughts when they come, and try to keep off the internet. Except this forum that I find helpful, and beautiful.

If that's OK for the admins, I will report here what the emg says in December and how my speech issues and weakness in leg evolve in terms of medical diagnose.
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Old 11-17-2018, 04:31 PM #23 (permalink)
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Default Re: please help, too many symptoms matching.

Marie Laure, why do you want to know? Have you seen prof. MEININGER, too?
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Old 11-17-2018, 04:32 PM #24 (permalink)
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Default Re: please help, too many symptoms matching.

No. I was just wondering
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