Romeosc
Distinguished member
- Joined
- Jan 2, 2018
- Messages
- 131
- Reason
- PALS
- Diagnosis
- 11/2017
- Country
- US
- State
- TN
- City
- Memphis
I was diagnosed Wed before Thanksgiving 2017!
I went to Mayo believing I had NPH (normal Pressure Hydrocepheous) I had been to 4 local Neurologist and all felt it was NPH, but because Spinal Tap and draining 40 CC of spinal fluid didn't help, we ere playing "stump the doctor" EMGs on Legs were normal and 4 MRIs (3 back and Brain) were inconclusive!
We were sucker punched with the news from Mayo! It only took them 48 hours to come to conclusion!
I don't know much about PLS or FALS. My father died at 93 in nursing home. He was diagnosed with NPH at age 85, but surgery was not done because of health concerns. We now wonder if he had FALS.
I just got approved for Radicava and am on Riluzole.
My problems started with my falling after stepping in a hole and breaking foot behind big toe. The doctor felt the healing of break was causing balance and walking problems. 4 months later after not improving, we started with neurologists. I had all symptoms of NPH (Balance "gait", Slight incontinence and memory problems).
I can still "walk" with walker, but rising from a chair is almost impossible without my lift chair. Upper body strength is diminished but still OK. Sitting up in bed is very difficult! I bought sleep number bed, but it doesn't get be completely up!
We are tearing out 1 bath to accommodate roll in shower. We had a ramp built to enter house and have contracted for a incline wheelchair lift to climb 3 steps in our split level house.
We have been busy in the 6 weeks since diagnosis.
Medicare covers Radicava, but not home infusion! Searchlight told me since we live on $2K per month Social Security income we qualify for assistance. They did not ask about our investment income. (only when we sell?)
I will have a port installed after first round of Radicava?
Any advice or help would be appreciated!
I went to Mayo believing I had NPH (normal Pressure Hydrocepheous) I had been to 4 local Neurologist and all felt it was NPH, but because Spinal Tap and draining 40 CC of spinal fluid didn't help, we ere playing "stump the doctor" EMGs on Legs were normal and 4 MRIs (3 back and Brain) were inconclusive!
We were sucker punched with the news from Mayo! It only took them 48 hours to come to conclusion!
I don't know much about PLS or FALS. My father died at 93 in nursing home. He was diagnosed with NPH at age 85, but surgery was not done because of health concerns. We now wonder if he had FALS.
I just got approved for Radicava and am on Riluzole.
My problems started with my falling after stepping in a hole and breaking foot behind big toe. The doctor felt the healing of break was causing balance and walking problems. 4 months later after not improving, we started with neurologists. I had all symptoms of NPH (Balance "gait", Slight incontinence and memory problems).
I can still "walk" with walker, but rising from a chair is almost impossible without my lift chair. Upper body strength is diminished but still OK. Sitting up in bed is very difficult! I bought sleep number bed, but it doesn't get be completely up!
We are tearing out 1 bath to accommodate roll in shower. We had a ramp built to enter house and have contracted for a incline wheelchair lift to climb 3 steps in our split level house.
We have been busy in the 6 weeks since diagnosis.
Medicare covers Radicava, but not home infusion! Searchlight told me since we live on $2K per month Social Security income we qualify for assistance. They did not ask about our investment income. (only when we sell?)
I will have a port installed after first round of Radicava?
Any advice or help would be appreciated!