Bulbar onset after Sauna

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Kiki123

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Dear Forum members,

I desperately need your advice as you're always so helpful.
Since over 3 months I have muscle twitches (whole body also tongue). I also felt pain in my muscles and cramps in hands, abs, feet, and my jaw. My jaw is now cracking.
Further I have jaw spasms and tend to bite unwillingly. I bite myself during every single meal now and at night.
Swallowing liquids got harder.

My breathing changed. I can't stand perfume anymore and experienced a pain below my chest at night that stopped me breathing. Maybe a diaphragm spasm? The globus feeling is also quite often there.

My tongue has an atrophy as well but only one side which gets more. Sometimes I have difficulties in pronouncing words with l/z/s.

7 weeks ago I had an exam at the neuro. Blood and Liquor were fine.They ruled out MS, rheumatic diseases, Borrelia and other bacteria, viruses including covid. Also the MRI of my head was fine.

The Emg was only done in my arms and legs and I'm afraid that I am bulbar onset and thus nothing was figured out. The neuro said that the disease is unlikely at my age esp.bulbar onset and an emg of the tongue is often difficult to analyze. I also read that many (bulbar) PALS have a clean Emg in the beginning.

Unfortunately my symptoms increased after the exam esp. the tongue atrophy. Otherwise I would have been happy with the exam results.
Btw my symptoms started after acupuncture, osteopathy combined with excessive sauna use (100 degrees).
Actually I wanted to do sth good for my immune system in September but might have caused oxidative stress to my cells since several studies indicate that problems with regulating high temperatures might cause the protein disfunction. Beforehand I had a 6 year long super stressful relationship and occupational stress.

I'm sorry for my language mistakes as I am not a native speaker.

I really don't know what to do now. Should I see another neuro or is it only possible to diagnose bulbar onset via slurred speech?

May you recommend helpful supplements/ alternative therapies/ dietary changes in case I have ALS and the diagnosis takes too long?

Thank you in advance for your advice. I appreciate that you take your valuable time to help people here as you're dealing with this horrible disease as PALs or CALs.
I wish you a happy new year!
Best regards,

Kiki (W/28)

Sorry I forgot to mention that some reflexes were brisk (esp.knees). Though the masseter reflex hasn't been tested so far.
Best wishes
 

Atsugi

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Hi Kiki,

I have good news for you. Your post did not make me worry about ALS at all.
Did you doctor look at your tongue? Did the doctor agree that your tongue is atrophied?
The EMG is a pretty good test. If you don't believe your doctor, you can always go to another one.
But mainly what I see is stress and worry. This can make a person very sensitve to everything that doesn't really mean anything. he biting, swallowing...can all be part of a stressful life.

There are no helpful supplements or therapies that would help ALS. If you had it, there's no changing it. But I don't see any reason to worry about ALS.
 

lgelb

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Kiki, if you bite your tongue in sleep, you can ask your dentist about a night guard. That might also help biting during the day. Keeping hydrated also helps.

There is no reason to think the EMG missed bulbar ALS. It doesn't work that way -- if you have ALS, there are multiple abnormal findings that you didn't have, and the issues you describe are not those of ALS onset. Also, there is no reason to worry that the sauna damaged you. What damages you is constant worry, which a good counselor or trusted friend or family member can help you with.

Best,
Laurie
 

Kiki123

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Hi Atsugi,
Thank you very much for your reply! I really appreciate your answer. You are totally right I am very stressed at the moment with these strange symptoms. The neuro had a quick look at the tongue 7 weeks ago but now the atrophy got more which is why I am so worried. :( He said the twitching of muscles and tongue can be BFS.
Perhaps I should wait and only make another appointment if things get really worse.
Again thank you so much for your expertise.
It's horrible that there is no helpful supplement for PALs. This makes me incredibly sad.
All the best,
Kiki
 

Kiki123

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GE
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Dear Lauri,

Thank you for your response. I'm delighted that you helped me. I will contact my dentist and try to solve the biting issues.
Wish you all the best and hope that als will be cured or at least stopped asap.
Best wishes,

Kiki
 
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