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Amyotrophic Lateral Sclerosis (ALS) Lou Gehrig’s disease

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

I'm so sorry 722jo I agree it is so scary not knowing. My husband 66 was told he might have ALS 2 months ago. There are hundreds of questions and hardly any answers. Started with his hands shaking when using them the doctor thought Essential Tremors. But after a few months he had major muscle loss in his arms and shoulders no where else. Now they think ALS I have read so much but really no answers that are for sure, The unknowing is terrible on the heart and nerves. We have been married 48 years so it has to be some other type of neuron disease. Hope you get some good answers soon. Glad I found this forum where I can see what other people think and say my hubby sure doesn't want to talk about it.

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Replies to "I'm so sorry 722jo I agree it is so scary not knowing. My husband 66 was..."
Teresa, Volunteer Mentor | @hopeful33250 | Dec 29, 2022

Hello @gizzmo and welcome to Mayo Connect. I can understand the concern you have for your husband. Symptoms that don't fit into a neat diagnostic box are troubling for both the patient and the medical team. I'm sorry to hear that you are in this situation.

I suppose you have considered getting a second opinion. If not, this might be a good idea, given the fact that meds have not worked for your husband's symptoms and his current medical team is at a loss as to what to do next.

Do you have a large research oriented medical center in your area? I'm thinking about a university medical school or a facility like Mayo Clinic? These types of centers are used to seeing unusual problems and as they are research oriented, they often have good success at diagnosing and treating hard-to-diagnose problems.

Have you considered a second opinion?

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