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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. :eek: 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
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Welcome to our group Jocelyn. Sorry you had to come looking for us. We don't have a lot of PLSers so feel free to ask questions in the other forums that might be busier. Take care. Hope we can be some help.

AL.
 

sral

Distinguished member
Joined
Sep 15, 2007
Messages
289
Reason
Learn about ALS
Diagnosis
n/a
Country
CA
State
ontario
City
toronto
Welcome

Sorry to hear about your diagnosis. It's funny how many people with the disease will say that they were very active go go go people before getting sick. I wonder if there is any link.

take care
 
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