Amyotrophic Lateral Sclerosis (ALS) Lou Gehrig’s disease

Kein covid, keine Impfung, keine Borreliose, kein Infekt, kein Diabetes, kein Alkohol... nichts. Untersucht wurde alles mrt eeg emg Nervenleitgeschwindigkeit, Blut alles was es gibt. Und die Symptome sind ganz extrem am ganzen koerper Muskelzucken wie blitze, auch innen im koerper zucku gen, ohne Pause, elektrogefuehl dabei, schweissausbruch alle paar Stunden zu hoher Puls im stehen. Es kam von einem Tag zum anderen und wird immer aerger taeglich. Davor war ich nie krank. In meiner Familie hat niemand so etwas...

Dann noch taubheitsgefuehle, kribbeln, vibrieren im bauch...

Translated message:
“No covid, no vaccination, no Lyme disease, no infection, no diabetes, no alcohol... nothing. Everything was examined mrt eeg emg nerve conduction speed, blood everything there is. And the symptoms are extremely on the whole body muscle twitching like flashes, even inside the body, without pause, electrofeeling, sweating every few hours too high a pulse. It came from one day to the next and is getting more and more annoying every day. I was never sick before. Nobody in my family has anything like that...
Then numbness, tingling, vibrating in the stomach”

Ihre Ärzte klingen, als würden sie wirklich versuchen, Ihr Gesundheitsproblem an die Wurzel zu bekommen. Ich bin traurig für dich, dass es so lange dauert. Ich hoffe wirklich, dass Sie bald eine Antwort finden. Und etwas Erleichterung! Ich habe Ihre Nachricht in der Hoffnung übersetzt, dass es andere Mitglieder in unserem Forum gibt, die vielleicht etwas Input für Sie haben werden. Haben Sie irgendwelche Medikamente wie Steroide erhalten, die bei Ihren Symptomen helfen könnten?
Translated reply: “ Your doctors sound like they are really trying to get to the root of your health problem. I’m sad for you that it’s taking such a long time. I sure hope you find an answer soon. And some relief! I’ve translated your message in hopes that there are other members in our forum who maybe will have some input for you. Have you been given any kind of medication such as steroids that might help with your symptoms?”

Bisher hat kein Medikament geholfen..

Bisher hat kein Medikament geholfen..
(So far, no medication has helped.)
😢

My 62 y/o husband was just to his Dr. for legs arms feeling heavy like he ran a Marathon. Muscle twitches in his arms, hands, back. The 3 possibilities the Dr. mentioned 3 possibilities, ALS, MS, Parkinsons, but said he didnt think Parkinsons because the hand shakes and my husbands hands/fingers didnt they had twitching. He cant even get into a Neurologist until end of January. Is there anyone out there with experience with ALS who can tell me the beginning symptoms their loved one experienced? This is a long wait and we are devastated.

Dear @laurahquayle11, Im praying you see this, My husband just saw his Dr. who is thinking he has ALS, We cant get in to a doctor until the end of January. This is maddening. He complains of Muscle twitching in his hands/arms/legs, heaviness in his arms/legs. he is 62. He is not in a w/c yet but Im feeling it inevitable. I need someone to talk to and some advice. Please.

Hi Jo, I can imagine how concerned you are that your husband may have ALS, MS or Parkinson's. The prospect is scary regardless of diagnosis.

I'd like to tag some members like @allegro @julesa @bethclardy22 @laurahquayle11 and @hopeful33250 who can share about their experiences ruling out neurological conditions and help with preparing for your husband's upcoming appointment with the neurologist, like what questions to ask.

You may also be interested in this related discussion that @gcranor started with helpful posts from @jenniferhunter @rivermaya34 and @larryh123

- Neuromuscular Testing and Waiting for ALS confirmation https://connect.mayoclinic.org/discussion/neuromuscular-testing/

Jo, you must be anxious to get a diagnosis. Is there any way to get an appointment with neurology sooner than in 6 months? Have you considered getting a second opinion at a large medical facility like Mayo Clinic?

Thank you so much for this, Hes sitting around and starting to get depressed. I will follow up and keep trying to get him to a neurologist that takes his insurance. As a retired nurse I can tell you he has all of the classic symptoms, heaviness in the arms and legs. twitching in the arms, hands, legs, his general practitioner gave him a muscle relaxer which has helped a little. We are on many waiting lists and one is in Chicago about 30 min away.

Hello @722jo

I can so understand your concern about your husband's symptoms. It seems that neurological symptoms can be challenging to pinpoint. When my symptoms first began (in my late 40s) one well-respected neurologist thought it was the early stages of MS while another thought it was the early stages of PD. They told me they might not know for sure until the symptoms worsen. As you can imagine, that was not very comforting or helpful to me. About 12 years later the consensus was PD.

As a nurse, you are probably well versed in talking with doctors. If I could make suggestions for your first appointment, however, I would suggest bringing a list of your husband's symptoms, as well as the times when the symptoms seem to be worse. (For example, at the end of the day.) Are there any activities that seem to make the symptoms worse?

Is your husband sleeping well? Is he able to walk without assistance?

As Colleen @collenyoung) has suggested, keep trying to get him an earlier appointment. Have you asked to be put on a waitlist for an earlier appointment if there are cancellations?