shine81
Member
- Joined
- Oct 27, 2018
- Messages
- 18
- Reason
- Other
- Diagnosis
- 00/0000
- Country
- DE
- State
- BL
- City
- berlin
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.
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.