Hi Connie,

I'm sorry to hear that this is what the doctors think you have. ALS and MND are two different names for the same illness. When I first started my journey with the MG symptoms, it was a concern that it might be ALS as well as my symptoms do not affect my eyes, really, only my 'bulbar' region (throat, tongue, facial muscles). After I had a blood test, CT scan and SFEMG and repetitive stimulation test, the docs. said they were sure it was MG (I also have a thymoma).

I also have a lot of twitching as well, mainly in my fingers. That twitching started before taking mestinon, and isn't part of MG so it's still sorta a mystery. My neuro. thinks that it might be from the thymoma, as they can cause other overlap syndromes.

Have you had a CT scan, just in case? You're also very young to have ALS. Another thing that you mentioned is 'numbness.' That's not a symptom of ALS. It does not cause any loss of sensation or feeling. Have they tested your B12 levels? I know it sounds like not a big deal to have a B12 deficiency, but it can cause loss of feeling and the sensation that you don't have legs. It can be disabling for a while if it's left for too long, but it IS reversible.

You and I are almost the same age. I think that you mentioned that you celebrated your 26th b-day sorta recently. Let's hope that it's not ALS/MND. But if it is, you certainly have a very positive attitude and that'll definately help you. I've met many people with ALS, and many of them live for a very long time. I know a few that have been living with the illness for 26+ years. Also, being diagnosed at a young age is a good sign that you'll live a very long time. As many of those people have said, ALS doesn't have to be fatal; it's all about how you decide to live with the illness.

There are many other illnesses that can cause loss of feeling and muscle weakness. Let's hope that they exhaust all avenues before giving you this diagnosis.

Take comfort that you're not alone, not matter what things turn out to be.

I wish you luck

Nicky