Jocelyn
Member
- Joined
- Oct 31, 2008
- Messages
- 11
- Reason
- DX UMND/PLS
- Diagnosis
- 09/2008
- Country
- US
- State
- Kansas
- City
- Eastern
Just thought I would chime in and proclaim my presence. I started having problems with my legs 7 0r 8 years ago. I mentioned it to my Gyno and he sent me to the Rheumy who sent me to a Neuro. The first Neuro told me it was depression. :roll: I knew better. The second Neuro did the tests and was amazed at my DTR and the clonus in my ankle/leg. He told me MS- but the LP said differently. At that point, I gave up. It was eating up my time and money so I went back to Rheumy who called it FMS and treated my pain. The doctors seem to dismiss my issues I suspect because of my age. I was 36 when this all started. Every once in a while, my Rheumy would tell me that he really thought I had a motor/neuro disease and want to send me back to KU Med. I, of course, said no. I didn't want more tests- 3 emgs, LP, lots of neuro testing, MRIs- I was just tired.
I had to quit my very active, on my feet 6 hours a day job and stayed home for a while. I got so lonely! When I started taking Lyrica I found I was able to be on my feet for more than an hour so I went back to work at my previous day job. After 9 months it was clear that the job was just 'too much' for me. I got a desk job. Yuck! I have always been an extremely active person- lots of energy, go, go, go- so this new lifestyle was frustrating but I adapted. (but not without the anger)
Earlier this summer I noticed my legs getting worse and my feet were beginning to really HURT to the point that I could barely walk! At that point, Rheumy did not take no for an answer and it was back to the Neuros at KU Med. This is when I got the diagnosed of PLS- not before another EMG and bloodwork, etc.
Several years ago I suspected PLS but dismissed it since it is considered 'rare'. So here I am, joining the group. DH is worn down from the last 7 years and now absolutely detests doctors. I decided I needed others who are going through this to talk with. It is such a hard disease to explain to others. I know you all will understand.
Jocelyn
I had to quit my very active, on my feet 6 hours a day job and stayed home for a while. I got so lonely! When I started taking Lyrica I found I was able to be on my feet for more than an hour so I went back to work at my previous day job. After 9 months it was clear that the job was just 'too much' for me. I got a desk job. Yuck! I have always been an extremely active person- lots of energy, go, go, go- so this new lifestyle was frustrating but I adapted. (but not without the anger)
Earlier this summer I noticed my legs getting worse and my feet were beginning to really HURT to the point that I could barely walk! At that point, Rheumy did not take no for an answer and it was back to the Neuros at KU Med. This is when I got the diagnosed of PLS- not before another EMG and bloodwork, etc.
Several years ago I suspected PLS but dismissed it since it is considered 'rare'. So here I am, joining the group. DH is worn down from the last 7 years and now absolutely detests doctors. I decided I needed others who are going through this to talk with. It is such a hard disease to explain to others. I know you all will understand.
Jocelyn