Just J
Distinguished member
- Joined
- Oct 30, 2007
- Messages
- 300
- Reason
- DX UMND/PLS
- Diagnosis
- 01/2010
- Country
- US
- State
- MD
- City
- Havre de Grace
My husband's mobility has been declining for 3 yrs. It first started in late 2005 with numbness in his feet, by Aug 2006 the weakness in his legs was so bad that he had to give up golfing which he loved (he was no longer able to make it through 18 holes even with using a gof cart). In Jan 2008 we applied for a handicap sticker for his car and recently purchased a cane for him. He is still able to go up and down steps but only when necessary. He is very fatigued throughout the day and can not stand for more than about 5 minutes and even sitting for too long becomes a problem. He now spends about 60% of his waking hours laying down. After taking a shower he has to lay down because his legs are tired. We FINALLY have an appointment with Johns Hopkins Neurological center in early September (even though we have seen other neurologist in the Baltimore area for the past 3 yrs). He has had numerous MRIs, brain scans, 2 emgs, and a spinal tap. The "science" is not showing anything is wrong. MS and lyme disease has been ruled out.
I have done a lot of research and everything leads me back to ALS. His walk is stiff, his legs won't bend, his left foot drops. Putting on pants and shoes is very slow and difficult. He is starting to have tightness/numbness in his hands. Otherwise, all symptoms are isolated to his legs, the left leg being weaker. He has hundreds of leg cramps and spasms every day, has had a lot of atrophy in his legs too. My only question is that he has lower back pain. Is pain a typical symptom? Possibibly it is just normal back pain that someone of his age (58) will have after years of heavy sports. He says the pain is managable and does not take pain medicine.
Naturally, no one wants to be diagnosed with ALS but after 3 years no diagnosis is not helpful either. A diagnosis of any kind would at least allow us to plan. I feel as though our life has been on hold for 3 yrs.
I have done a lot of research and everything leads me back to ALS. His walk is stiff, his legs won't bend, his left foot drops. Putting on pants and shoes is very slow and difficult. He is starting to have tightness/numbness in his hands. Otherwise, all symptoms are isolated to his legs, the left leg being weaker. He has hundreds of leg cramps and spasms every day, has had a lot of atrophy in his legs too. My only question is that he has lower back pain. Is pain a typical symptom? Possibibly it is just normal back pain that someone of his age (58) will have after years of heavy sports. He says the pain is managable and does not take pain medicine.
Naturally, no one wants to be diagnosed with ALS but after 3 years no diagnosis is not helpful either. A diagnosis of any kind would at least allow us to plan. I feel as though our life has been on hold for 3 yrs.