Recent content by taratune

My brother has lost so much muscle functioning and continues to have so much pain that he is now bed bound lying on his stomach. He has lost leg muscles, back and stomach muscles and shoulder muscles. He can still use his hands and forearms some and can move his neck. He can still talk, eat...

Cidp Sorry, I think my dyslexia kicked in.....I'm still not sure what it is. CIDP.... CDIP.....it is something like that. It appears from the posts above that it is often difficult to differentiate between this and motor neuron disease.....so I can't help but think that it is cruel to not...

I am wondering how the doctors can tell that you don't have CDIP vs ALS? Thanks, Tara

infection and ALS Laurel, Thank you so much for chiming in on the need to try treatment for possible infectious comorbidities. I have sent two of my brother's doctors some of the medical reports that suggest infectious process. I am hoping that they will at least run a few tests to see if he...

Hello, My brother has also been going down fast. He was diagnosed in February and started off using a cane that he borrowed from my father. He has had a few fast slides since then. His legs and trunk muscles are gone. He has also lost his shoulder muscles. He can still use his hands and...

nerve surge incontinence, mitochondrial disorder Thank you for giving me your feedback. My brother has been complaining about his pinched nerve and he has had several MRI's with and without contrast and several doctors have told him that nothing shows up but a slight bulge in the disc that is...

My brother has a weird bulge feeling in between his shoulders. He has recently been feeling a surge of pain down his spine that shoots into his legs. He has progressive muscular atrophy and can no longer walk or stand. His shoulder muscles are weak but he still has good use of his hands. He...

Thank You,...... so much for helping to clarify things for me. Today my brother had his EMG repeated at the ALS clinic. I did not get any report that included numbers but I did overhear the doctors talking about 3's and 4's. All they said was that he had evidence of motor neuron disease in...

My brother was seen at the ALS clinic last week and they decided that they needed to do more blood tests and to do another EMG. The new EMG is scheduled for tomorrow. He seems to be loosing muscle quickly. In May his Respiratory function was 107% of expected. Last week it was down to 81 % of...

My brother saw another muscle disease specialist and this doctor reports that he has progressive motor neuronpathy......but ALS cannot be excluded. He said the biopsy showed signs of nerve pathology not muscle pathology. He also said that "sparing of the left quadriceps reflexes suggests there...

equipment Thank you for the tips. My brother fell on the floor while he was visiting my parents and they had a real hard time helping him up. Apparently his back and arm muscles are also getting weaker. He is still able to walk with a walker....but sort of makes funky high steps. He says...

Sometimes it doesn't matter how direct you are. My brother was told that he either had ALS or something very close to it.....and that he would probably be in a wheelchair within 6 months and that he could die within 2 years. He told my brother that he should be seen at the ALS clinic...

Wheelchair accessibility ? I just wanted to say Thank You again to all who post and share their experiences for us all to learn from. They are so helpful for planning ahead and avoiding costly mistakes. I try to think things through but it is so hard to know what to do. The next thing we...

need wheelchair and transport advise Thank you so much for the support and ideas. My brother is getting pretty wobbly and I fear we will be needing a wheelchair for him soon. I have heard that Medi-cal Medicare will only pay for a wheelchair for him once every so often. One source said 3...

home remodel for disability Yesterday I learned that some communities have special funds to help with building ramps and enlarging doors. In the city of San Diego I think you can apply for up to $3,500 through the San Diego Housing Authority. The guy I spoke with said that the program is...