Probable ALS

[van1]

Last December I saw a neurologist for my right leg muscle wasting and weakness. He ran some tests and could not rule out ALS. My husband and I just came back from Mayo with a prognosis of probable ALS. They want to see me in three months and start Riluzole. My blood work and MRI have come back normal. What concerns him is my EMG and Nerve conduction. How do you keep up hope when Mayo say the prognosis is not good.

 

[Atsugi]

Live day to day. Hope to leave a legacy.

 

[Mtzu]

Hi Van1,

Sorry to hear your news. Now is the time to do any great adventures you've put off till a later date. If it is ALS then there's nothing you can do about it and will want to make every day count. If it's not, then you'll add so many wonderful experiences to a longer life. Just do it. Go for it. Live!

Michael

 

[DreamsEnd]

So sorry to have you join out club. Atsugi and Michael said it best. Go out and enjoy as long as you can.

Sherry

 

[lgelb]

I'm sorry to hear about your news, Van. "Probable" is pretty dialed in and MRI/bloods when normal simply rule out some of the other possibilities. The good news is that you may have the flail leg subtype which is usually comparatively slow-progressing. I would live as if, which is to say, get your legal/financial affairs in order, start thinking about your home with a power wheelchair/lift in it and make note of whether that would work, and then go do some things that make you happy. As to your question, you may want to make your hope to make the most of every day, a hope for which every day is new.

 

[van1]

good advice.

 

[van1]

good advice