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Amyotrophic Lateral Sclerosis (ALS) Lou Gehrig’s disease

Caregivers | Last Active: Sep 30, 2023 | Replies (107)
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@722jo

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.

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Replies to "Thank you so much for this, Hes sitting around and starting to get depressed. I will..."
Teresa, Volunteer Mentor | @hopeful33250 | Aug 14, 2022

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?

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