I need help with you all - Please reply

[deliagarcia1]

I agree they are all good indicators of PLS at autopsy but there is no conclusive marker or protein anomaly that says PLS for sure. I'll check in August.

I have been looking for a support group near me and you are the only one from Texas! Glad to hear from you.

 

[deliagarcia1]

I have been looking for a support group near me and you are the only one from Texas. Glad to hear from you.(I am BC. That is before computers. So I think I am doing this right, I hope.

 

[WillyB]

Brother Rock, Here is how it started for me. Even though I'm 54 now I have always been an athlete. While I was playing center field and went to catch a pop fly I fell right on my face. Well I just got up brushed off and blamed it on the terrain of the field. My next up to bat I bounced the ball off of the fence, which would of ordinarily been an infield homerun or at the least a triple, and I barely made it to first base. My symptoms prior to that were so suddle I never even knew they were there. I was first told by the docs that I had one of three. Hereditary Spastic Paraparis (HSP), PLS, or ALS. I was dumbfounded; I was a Medic and had never heard of HSP or PLS. So I chose HSP since it only effects you from waist down. It was not until I started haven trouble swallowing, and talking that the docs changed my diag. to PLS. It’s like everyone is saying PLS is so rare no one really knows. I have also been to the Cleveland Clinic and just returned from the Mayo Clinic. and sure enough I have PLS. It’s not the end, it’s the beginning of a life with challenges, but with challenges comes strength. I have had PLS for over 4 years, and have completely restored a 72 Chevelle SS 454 and have played the role of Mother Ginger in the Nutcracker play (something I would have never done prior to the PLS), and have already secured my spot for this years play. Be strong my brother and enjoy every day you can look down at the grass.

 

[Brother Rock]

Thank you WillyB,

I am slowly losing my "faith" that I have PLS because I see what others are going through and I do not even come close. I have gone to see another doctor to get a second opinion. He said I match ALS more than I do PLS because I am only affected by weakness in my right leg. He also ALS generally starts from the outer parts of our limbs whereas my is in my right thight (?) although I have a problem with drop toe when I get really tired. In fact I will be getting a leg brace soon to where when I am tired. I have had several falls but I thank God that I have not broken anything. I had blood drawn for 6 different test last week. The new doctor said there was some diseases that could cause my symptoms that were not tested for. I also believe he is doing some genetic testing. He said most of the diseases he is testing for are curable. That would be nice. But I sit and wait to hear from him. Take care and keep your chin up. My sister who died from ALS never let it defeat her all the way till the day she died. She was courageous (?).

 

[Brother Rock]

Thank you for your response deliagarcia1.
Sincerely
Brother Rock