Cj, I seldom come to this thread but for some reason when I peeked in here I saw your post. I am so sorry for your diagnosed but I am glad that you found the forum! My husband was diagnosed July 09 with Bulbar Onset ALS by a ALS Neurologist. We were offered a second opinion but declined. We knew it was a correct diagnosed and going through all of the testing and hearing ALS once was enough for us. His speech is almost gone, has a PEG and will soon need BiPap. He also has severe Duputren's Disease-actually has had it for more than 20 years. I wonder if any of the other PALS have it? Maybe it is somehow a part of the entire horrible spiral of ALS? Here is a brief excert on it, "Diseases Associated with Dupuytren’s
In Dupuytren’s disease, abnormalities can occur in fibrous tissues in areas other than the palm of the hand. This is known as ectopic
(pronounced “ehk TAH pik”) disease. Individuals with more severe, rapidly progressing Dupuytren’s disease are more likely to develop these conditions. Other areas affected include:
Knuckles ( Garrod’s pads ): enlargement of the knuckles can develop before other signs
Feet ( Ledderhose disease ): changes in the fascia underlying the skin on the underside of the feet cause nodules and can lead to contracture of the toes
Penis ( Peyronie’s disease ): curvature of the penis"
Learn more about Dupuytren’s disease progression here.
What is Dupuytren's Disease? | Men, Women | Causes | Ectopic Disease
I asked the Neurologist if she thought that there was any connection but she poo pooed it. Now we know that there are at least 2 PALS.
If I were you, I would take Sadie's advice and apply immediately for SSDI! Are you by any chance a VET? You will have more exposure if you post on the on thread for PALS! My advice is live for the moments and make them count.