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Amyotrophic Lateral Sclerosis (ALS) Lou Gehrig’s disease
Caregivers | Last Active: Sep 30, 2023 | Replies (107)Comment receiving replies
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?
Replies to "Hello @722jo I can so understand your concern about your husband's symptoms. It seems that neurological..."
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First of all thank you so much for responding, I forgot to add his General practitioner told him he doesnt think its MS OR PARKINSONS but cant rule out ALS. (MY husband specifically asked him. Yes I'm constantly asking him about his symptoms and he frequently gets angry when I do. If you look it up the twitching is the key, but then he has all the other classic s/s of ALS. He is on all the waiting list especially here in IN. Some of the Neurologist here dont see ALS. When he first wakes up the symptoms are worse and at night but the twitching never stops and moves around, its the neurons attacking the muscles. Yes Ive started a list, because I know as a heart patient and diabetic you can forget things when your at your Dr. apt. I' m starting first thing in the am to call more Neurologists. Again, thank you so much for listening. I hope you are doing well.