AngelManFL
Active member
- Joined
- Sep 30, 2007
- Messages
- 98
- Diagnosis
- 11/2007
- Country
- US
- State
- FL
- City
- Tampa Bay Area
Hello everyone and anyone,
About 18 months ago, I started to have alot of weakness in my legs and a great deal of pain trying to fight that weakness, hand pain, joint pain and muscle pain. tested for lyme, RA (which is always a little high to date), I can't even remember how many test... many many months later with several different diagnosis' and many doctors - still nowhere. First it was rheumatoid, then fibromyalgia and so and so on.. now I am in a wheelchair(since May) and losing motor skills fast. For a little history - 18 months ago I had just turned 39 weighed 206 pounds mostly muscle(now 170) and was in the best physical shape of my life! so I thought... My brother owns a specialized drilling foundation corp., which I run from the inside and he from the out. I am still working full time sorta, trying to hide the loss of my motor skills... in a wheelchair it is somewhat easier.. I used to type 60 wpm blindfolded, I have been at this bit for 20 minutes.. not one rheumatologist, neuro, or anyone has ever mentioned or even hinted that I might have ALS until a week ago, and now I have an appt at the Mayo Clinic in Jacksonville, FL Nov 29th. I don't mean to sound like a baby but I am scared to death that I don't have too much time left to communicate... in 18 months I have lost my ability to walk, to type and now my speech is becoming slurred and very difficult, I really have to concentrate hard to get things out properly... all this and I am still running the corporation and I am the primary caregiver of my mother. I don't have time or strength to be angry with past doctors or misdiagnosed whatever - like I said, 18 months ago no one could have ever looked at me physically and believed I was ill... I'm sorry this is long and I don't have time for self pity, should I be finding other care for my mom? looking for someone to takeover my job? making arrangements? I just had a signature stamp made for work to sign checks because I can no longer get my hands to do it.... I feel so lost and so confused and so overwhelmed I do not even know where to begin. I have not told my brother or my mom that they now suspect ALS... I just cry myself to sleep every night. Nobody ever mentions pain associated w/ALS, but I suffer horribly.. Although I have noticed the less I fight and try to hide how fast I am declining the less the physical pain... but also the faster decline... this now taken me more than an hour to type and I can't go any further at the moment... I have read a couple of your threads and I guess I just don't want to feel so lost.. I feel in my heart I may not have much time left to communicate, but will do my best. Please forgive me for mispelled words or poor grammar...
Don
About 18 months ago, I started to have alot of weakness in my legs and a great deal of pain trying to fight that weakness, hand pain, joint pain and muscle pain. tested for lyme, RA (which is always a little high to date), I can't even remember how many test... many many months later with several different diagnosis' and many doctors - still nowhere. First it was rheumatoid, then fibromyalgia and so and so on.. now I am in a wheelchair(since May) and losing motor skills fast. For a little history - 18 months ago I had just turned 39 weighed 206 pounds mostly muscle(now 170) and was in the best physical shape of my life! so I thought... My brother owns a specialized drilling foundation corp., which I run from the inside and he from the out. I am still working full time sorta, trying to hide the loss of my motor skills... in a wheelchair it is somewhat easier.. I used to type 60 wpm blindfolded, I have been at this bit for 20 minutes.. not one rheumatologist, neuro, or anyone has ever mentioned or even hinted that I might have ALS until a week ago, and now I have an appt at the Mayo Clinic in Jacksonville, FL Nov 29th. I don't mean to sound like a baby but I am scared to death that I don't have too much time left to communicate... in 18 months I have lost my ability to walk, to type and now my speech is becoming slurred and very difficult, I really have to concentrate hard to get things out properly... all this and I am still running the corporation and I am the primary caregiver of my mother. I don't have time or strength to be angry with past doctors or misdiagnosed whatever - like I said, 18 months ago no one could have ever looked at me physically and believed I was ill... I'm sorry this is long and I don't have time for self pity, should I be finding other care for my mom? looking for someone to takeover my job? making arrangements? I just had a signature stamp made for work to sign checks because I can no longer get my hands to do it.... I feel so lost and so confused and so overwhelmed I do not even know where to begin. I have not told my brother or my mom that they now suspect ALS... I just cry myself to sleep every night. Nobody ever mentions pain associated w/ALS, but I suffer horribly.. Although I have noticed the less I fight and try to hide how fast I am declining the less the physical pain... but also the faster decline... this now taken me more than an hour to type and I can't go any further at the moment... I have read a couple of your threads and I guess I just don't want to feel so lost.. I feel in my heart I may not have much time left to communicate, but will do my best. Please forgive me for mispelled words or poor grammar...
Don