Meredith Reekers

Hi Janice,

I’m so sorry to hear that. But if you can, I would get tested for the c9orf72 error. It also causes frontal temporal dementia and sometimes mixed ALS and frontal temporal dementia. Dementia is poorly understood and people get wrongly categorized as Alzheimer’s all the time.

I encourage you to get tested because gene therapy is alm…[Read more]

Hi Leslie,

I’ve heard great things about the ALS clinic at Colombia and their genetic counselor. I’m sure you’re probably already aware of the main known genetic errors that cause ALS (c9orf72 and SOD1) but they will explain them in depth at your appointment. If you need peer support from those of us who are carriers, please direct message me.…[Read more]

Hi Lisa,

Just my two cents  (I’m pre-fALS and worry about cramping a lot), you might want to look at the possibility of an electrolyte imbalance. My neuro suggested that when I complained about a recurring Charley horse in my right calf. Supplementing electrolytes relieved it.

I hope you feel better soon,

Meredith

I agree David. My family history is similar to yours with c9orf72 ALS/FTD.

I’m about to send in my sample for testing. The only hesitation is potential discrimination by non-healthcare insurers (e.g. life insurance, long term care insurance etc). But in case y’all don’t know, the G…[Read more]