I'm sorry, OP. you and your family are in my thoughts.

Anonymous wrote:My thoughts are with you and your husband and family during this difficult time. I recommend resources from Mayo Clinic, they do a good job of explaining things without causing alarm. http://www.mayoclinic.com/health/primary-lateral-sclerosis/DS01115

Please take time to take care of yourself too. The stress from a loved one's medical problems can become overwhelming.

Thanks, today it is very overwhelming.

He isn't able to speak, much, and he is having trouble swallowing. He's going to lose his ability to walk, most likely. Yeah "over years" .... but he's had these symptoms now for 5 years and he's in his mod 50s. We have young kids!! I doubt he will be able to work much longer.

He's just gotten over one very serious illness, is dealing with another, and on top of it, this. It really really really stinks.

I'm so sorry OP. Just said a little prayer for your family.

My thoughts are with you and your husband and family during this difficult time. I recommend resources from Mayo Clinic, they do a good job of explaining things without causing alarm. http://www.mayoclinic.com/health/primary-lateral-sclerosis/DS01115

Please take time to take care of yourself too. The stress from a loved one's medical problems can become overwhelming.

Anonymous wrote:Just wanted to give you all an update -- we still don't know for sure what is going on, but the best guess is side effects of long term use of Lipitor.

I refuse to touch it for these reasons. Friend of mine had colitis kicked off due to this drug. Still suffers and when he suffers, I suffer. I hate to see him hurting.

I am sorry OP. I am wishing you all the best for you and your family.

Anonymous wrote:OP - whatever you do, DO NOT ASK DR. GOOGLE. Please stay away until you know more information or you will make yourself crazy.

I appreciate the caution, however, actually, I have had a great deal of success with using the internet to help me research medical issues! Of course, you do need to use intelligent discretion with all resources, internet and otherwise.

I'm very sorry that you and your husband are going through this. It must be very difficult. I went through something similar with my mother and it was extremely difficult. Best wishes for your family.

OP - whatever you do, DO NOT ASK DR. GOOGLE. Please stay away until you know more information or you will make yourself crazy.

So so sorry to hear this news. Thinking of you and your family

Anonymous wrote:Wow, OP, I am so sorry. If there is no PLS organization, contact the ALS Association's DC/MD/VA chapter for help if you haven't already. They were wonderful when my family went through this.

Thanks. Am reeling.

Wow, OP, I am so sorry. If there is no PLS organization, contact the ALS Association's DC/MD/VA chapter for help if you haven't already. They were wonderful when my family went through this.

Anonymous wrote:OP back again after I guess what... 1 year and a half?

Diagnosis turned out to be: PLS

http://www.sp-foundation.org/understanding-hsp-pls/pls/

Sucks.

I'm sorry, OP. I wish both you and your husband the best.