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shine81

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Hello, and first of all, I wish you all the best you can all get for 2019 including love and peace in your souls.

I posted here a few weeks ago, as I was concerned with a myriad of Symptomes including feeling of weakness in arm and one leg, beginning of fasciculations, a number of sensory issues and speech/swallowing issues. I saw one neurologist in Germany where I live, who was concerned and who performed a very quick emg and found a small abnormality in the right calve (did not explain me much what it was and said it's rather frequent) where all my fasciculations at that time were. Then I Went down the rabbit hole and saw THE ALS specialist in France (where I'm originally from). He did a very thorough examination and said he was sure I don't have als, but thzt he would still refer me to an EMG since I was very anxious.
Ho however did think about teferring me to his colleague in Germany leading the ALS clinic, which I found weird but maybe it was to make things convenient for me in terms of transport and payment.

After this appt I was very reassured, totally convinced als was out of the picture. However meanwhile fasciculations have spread in all my right side at specific spots (shoulder, calve) and my right side of the breast constantly "vibrates". That's OK, I read all your advice here and did not worry much as I don't évidence objective weakness. However since then I also have tingling on my face and tongue, and most of all I really have trouble speaking. Words are hard to pronounce, especially the "S" sound. Feels like tongue is too big for mouth and tired. It does hurt when I speak for 5mn,like a cramping muscle. Moving my mouth around (duck face etc) is harder, and I have visible fasciculations on my chin and non visible on my cheeks. Swallowing has changed too and is difficult to make but I do eat normally. I've asked people around and no one notices I'm slurring, but the difficulty I have is clearly objective.

Problem : since I live in Germany and had decided to trust the neuro in France who clearly was kind enough to prescribe me an EMG to reassure me only, (he said it's not urgent, it's for you), I called and canceled the emg, before my symptôms get worse. I thought, it was selfish from me to steal a slot from this doctor as well as publics money just to reassure myself, and figured I should just be grown up and start trusting experienced doctors.

Now I deeply regret this since my speech issues and pain in the tongue are really worrisome. My tongue looks each week more different, as in thinner and scalloped, but I know anxious mind can exacerbate things so I don't count that too much in my "assessment".

Questions :

-does bulbar als only correspond to slurring words, or is this difficulty to pronounce s sounds and pain after speaking also one form of beginning? It feels like it's getting worse, but some days or situations it gets better for no reason. That's what I take as a reassuring element (als is progressive..) but reading some posts in this forum shows that people at the beginning of their onset had some back and forth in mild symptoms along with a general progression (which is my case for the speech)

- would you think calling back the Dr and scheduling an emg is important? Problem is, it's in France with the famous als specialist, I need to take a day off, fly there and pay a lot. In Germany there's the neuro who assessed me initially, and he asked me to go back to him in March to reassess symptoms...he hesitated between sending me to clinic for a few days of tests, or having a psychiatric assessment to exclude that I'm not only somatising. He asked me my opinion (!!) and I did not know what to say, so he chose the psychiatric assessment... However I did not do that because German isn't my mother tongue so it's rather hard for me to speak to a psychiatrist, plus my mother is a psychologist and is the first to tell me that I'm too anxious at times, but this time she is saying that something physical is going on (although not als, in her opinion). I saw a colleague of her specialized in somatosation who said that my anxiety towards my symptom was rational and not exaggerated since I was trying to trust doctors, that I'm conscious of my capacity to somatize but that speech issues were not part of this. However it's not in German so the neuro won't accept it..

It's just hard to be in the wait,I wish I could see a neuro soon but no appointments available and meanwhile I'm here with my speech issues and tongue pain, and anxiety is coming back...

Reading the psuedo bulbar section on this forum showed me thzt people with ssimple speech disorders and initially clean emgs were diagnosed later with als...

If anyone has answers or guidance on what I could do I would be grateful. Last time I posted, your answers helped me tremendously going back on the right path.

Thank you so much for reading me.
 

shine81

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Thanks! Could not find it...
 

lgelb

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As you mention, Shine, the anxious mind can see things that aren't there, and create things that otherwise wouldn't be. So for example when you make statements like "I've asked people around and no one notices I'm slurring, but the difficulty I have is clearly objective," you might want to consider that possibility.

Bulbar onset does not occur as you have described.

As for the EMG, at this point, you already had a clean one (and you have every right to the report on that, and are welcome to post it), so I don't see the point of spending a lot of money on another, "scalloped tongue" or no. Whatever you think you have read here, if there is true speech difficulty, others will hear it and it will progress, unmistakably.

In sum, I think our original comments hold true. You can see a PCP for approaches to the anxiety, and see how far addressing that takes you in terms of symptoms, then revisit any needed diagnostic testing. As to your mother's and her colleague's comments, my experience is that if your imagination is running wild in any respect, it is most difficult to parse what is imagination and what is not. Thus, my suggestion above.

Best,
Laurie
 

KarenNWendyn

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I read through your prior posts. You describe twitching, some sensory symptoms, and “feeling weak”.

It sounds like you’ve seen at least 2 neurologists and had some EMG testing in the last several months “of muscles in the upper arm left, and two muscles in the right leg. All came back normal” except for some slight abnormality in the right calf, and the first neurologist didn’t seem concerned.

Then you saw a French physician, an ALS specialist, and it sounds like he is at a university medical center. You said, “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. “He told me he's sure i don't have ALS.”

You haven’t described failure or any objective weakness noted on exam. You mention some speech issues that apparently others don’t hear and a sensation that your tongue is too big for your mouth.

You do not have ALS. If you were bulbar onset, EMG on the limbs would have shown characteristic abnormalities. Others would notice your speech abnormalities, and your tongue would feel perfectly normal.

I have slurred speech that others can hear as a result of ALS, and my tongue feels the same as it always has.
 

shine81

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Dear Karen, dear Laurie,

Thank you for taking the time. You are really helping me. I am sorry Karen that you have slurred speech resulting from ALS and for both of you as cals or Pals might be going through. Obviously ALS is taking people's functionalities but it's never going to have a drop of such kind souls as yours. It is not an easy period in my life for me and this pain/difficulty to speach gives me a hard time in my personal and Profesional life, and when I'll be out of the woods I'll always remember that I got help from strangers who took on their time to reassure me, without judgment, despite their own difficult situation.

I agree that no one hears slurred speech. They just hear that I don't speak much anymore and that I do not pronounce well things / have to repeat a lot bevause mispronounced words.

So for now, no reason to be afraid of ALS, but hopefully my speech disorder won't progress anymore than it already did and I'll be able to fully forget about als. I 'll try not to focus on it in the meantime but since something is objectively preventing my tongue from doing certain movements thzt allow me to pronounce certains sounds, it is not easy.

I' ll try to focus on the facts that 1. Tongue hurts a lot which is apparently not the case in ALS and 2. It got better for some days last month, which is also not typical at all in ALS.

All this I think is particularly stressful because I have to do it in a language in which I'm not fluent, so every phone call to doctors is a challenge :) I'll follow up with a ENT and a neuro in the next months as scheduled, unless it gets worse before...

Just in case that rings a bell for someone who's medically trained here, my tongue is quite yellow for some time now (2months). Doctor acknowledged it it but when i asked whether it could be a sign of reflux for instance or tongue infection that could hurt it and cause my symptoms, he dismissed it. So maybe it's normal but I was hoping it could be a hint for me towards the real cause of my symptoms.


Thank you again so much!
 

lgelb

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There is no correlation between yellow tongue and neuromuscular disease of which I'm aware, so that's likely why he said that.

However, since one possible cause of a coated tongue is sleeping with your mouth open, and poor sleep can cause or worsen the issues you have, I would explore the possibility of a sleep disorder with your primary physician (start by Googling the Epworth sleep inventory and take that).

All the best.
 

shine81

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Thank you for this information, lgelb.

I will research it.

Once I get more information from a doctor on my condition, I will post it here. Since my fasciculations are really becoming worse everyday in terms of how obvious and constant they are, I will nevertheless ask the neuro if he thinks that a' emg is necessary. There's something wrong going on with me, I know my body and I feel it. Probably not als, but something for sure!
 
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