Bulldog29
Active member
- Joined
- Nov 6, 2015
- Messages
- 38
- Reason
- DX UMND/PLS
- Diagnosis
- 06/2015
- Country
- US
- State
- TX
- City
- Mansfield
Hi folks, so happy to have found this sight after searching for info about my diagnosis of PLS in July. First off, if this is in the wrong forum please let me know.
So, before I ask any questions let me give you all some history. I'm 46, male and in all other aspects very healthy. About 2 1/2 years ago I noticed I would occasionally stub my left toe and trip a little during work but being that I'm a general contractor, normally wearing steel toe boots and walking on uneven terrain I chalked it up as just being a little clumsy. I was also having a hard time pointing my toes to get my boots on. It was around that same time that I discovered, while shagging fly balls at my son's baseball practices that I was having a hard time running. It was as if I just couldn't get my left leg to cooperate, almost locking at the knee when I tried to run.
Fast forward to last summer, I was sent by my primary care doc to a neurologist. I have a history of neck problems from playing hockey in my teens and twenties. The neuro did a couple of reflex tests in his office and told me I had a very serious spine impingement and sent me for my first MRI. That came back and he didn't see the issue as being as "serious" as he first thought so we went for MRI #2 to check my brain for signs of MS. That came back negative so he concluded the impingement at C5-C6 was causing the problem with my left leg. From here I was sent to a neurosurgeon and last November I had fusion surgery to fuse those two vertebrae and remove the disk.
I woke up from surgery feeling great and I was able to wiggle my left toes better than before in recovery. That was the best I felt right then. After recovery from that surgery I saw the surgeon again for follow-up in January this year and told him I felt like I was getting worse not better. He told me not to worry about it, that it could take 6-12 months for nerves that were damaged to regrow. It was about this time that my left hand started to stop cooperating with me. My wife noticed around February or March that I now had a very noticeable limp. I went back to the surgeon with my new concerns and he sent me for MRI #3 to check the fusion. Everything looked good there so his answer was that there must be some further impingement above and below that disk and he proposed doing 2 more fusions. He's a great surgeon but I wanted a second opinion.
I visited a new group of neurosurgeons that came highly recommended (wish I had seen them first). The new surgeon sent me for MRI's #4 - #6 to check the rest of my spine. They were a bit curious why I had fusion surgery on C5-6 when my problem was my leg at first. Either way, they concluded that my issue was not surgical and sent me to my neuro who has a back ground in MND and MS.
My new doc watched me walk down the hall, did some reflex tests and checked my muscle structure and told us the first visit he was 95% sure it was something called PLS. I went for blood work and a spinal tap to rule out a host of other maladies and when he got all of the results he told us he was convinced I had PLS. We left that visit both feeling blessed (that it wasn't ALS according to the doc) and totally confused. It's such a rare condition, I've had a hard time finding any information about what to expect the rest of my life.
Sorry for the long read but it's been a long, scary journey to here. I have an appointment with the MND group at UTSW in Dallas in January for another opinion but hope that some of the experience here can answer some questions I have that have not been answered. Here goes:
Firstly, I've read that PLS normally takes about 5 years to be diagnosed, does it seem like my new neuro jumped on a diagnosis prematurely?
My limp kind of comes and goes in severity. Some days I barely notice it but if I do notice and think about it, the limp comes back. Is that indicative of MND?
When I was first diagnosed, I was having terrible cramps in my left leg at night. I changed my diet and totally swore off Diet Coke and the cramps have gone away almost completely. Anyone else experience that?
I have no real pain (except the occasional hand or leg cramp) or numbness that I thought were part of PLS. Does anyone else have the same?
I've noticed that if I have a beer or two I look like a drunk toddler. I haven't read anywhere that alcohol has an effect on gait but does anyone feel like that?
The other thing that's driving me crazy is the trembling. If I get cold or in a high stress situation (like my son being the closing pitcher or watching my poor Cowboys lately), my knee starts to tremble uncontrollably. My leg will get really stiff on those occasions too. I normally will need help out of the stands at games because of it. Is that normal?
Did anyone have EMG's or nerve tests before their diagnosis? I have a few friends who worry that I didn't have more testing.
I have read that PLS is not considered fatal but that the progression is around 20 years versus 3-5 with ALS. Does that mean that PLS is fatal at 20 years? My progression was slow for the first 2 years but the limp and my hand are just the last 8 months. Is that common?
Does everyone with PLS have bulbar problems?
Sorry for such a long first post, I'm just trying to figure out where I go from here. I can't work anymore because it's too dangerous so I'm trying to figure out what I can do.
Thanks!
So, before I ask any questions let me give you all some history. I'm 46, male and in all other aspects very healthy. About 2 1/2 years ago I noticed I would occasionally stub my left toe and trip a little during work but being that I'm a general contractor, normally wearing steel toe boots and walking on uneven terrain I chalked it up as just being a little clumsy. I was also having a hard time pointing my toes to get my boots on. It was around that same time that I discovered, while shagging fly balls at my son's baseball practices that I was having a hard time running. It was as if I just couldn't get my left leg to cooperate, almost locking at the knee when I tried to run.
Fast forward to last summer, I was sent by my primary care doc to a neurologist. I have a history of neck problems from playing hockey in my teens and twenties. The neuro did a couple of reflex tests in his office and told me I had a very serious spine impingement and sent me for my first MRI. That came back and he didn't see the issue as being as "serious" as he first thought so we went for MRI #2 to check my brain for signs of MS. That came back negative so he concluded the impingement at C5-C6 was causing the problem with my left leg. From here I was sent to a neurosurgeon and last November I had fusion surgery to fuse those two vertebrae and remove the disk.
I woke up from surgery feeling great and I was able to wiggle my left toes better than before in recovery. That was the best I felt right then. After recovery from that surgery I saw the surgeon again for follow-up in January this year and told him I felt like I was getting worse not better. He told me not to worry about it, that it could take 6-12 months for nerves that were damaged to regrow. It was about this time that my left hand started to stop cooperating with me. My wife noticed around February or March that I now had a very noticeable limp. I went back to the surgeon with my new concerns and he sent me for MRI #3 to check the fusion. Everything looked good there so his answer was that there must be some further impingement above and below that disk and he proposed doing 2 more fusions. He's a great surgeon but I wanted a second opinion.
I visited a new group of neurosurgeons that came highly recommended (wish I had seen them first). The new surgeon sent me for MRI's #4 - #6 to check the rest of my spine. They were a bit curious why I had fusion surgery on C5-6 when my problem was my leg at first. Either way, they concluded that my issue was not surgical and sent me to my neuro who has a back ground in MND and MS.
My new doc watched me walk down the hall, did some reflex tests and checked my muscle structure and told us the first visit he was 95% sure it was something called PLS. I went for blood work and a spinal tap to rule out a host of other maladies and when he got all of the results he told us he was convinced I had PLS. We left that visit both feeling blessed (that it wasn't ALS according to the doc) and totally confused. It's such a rare condition, I've had a hard time finding any information about what to expect the rest of my life.
Sorry for the long read but it's been a long, scary journey to here. I have an appointment with the MND group at UTSW in Dallas in January for another opinion but hope that some of the experience here can answer some questions I have that have not been answered. Here goes:
Firstly, I've read that PLS normally takes about 5 years to be diagnosed, does it seem like my new neuro jumped on a diagnosis prematurely?
My limp kind of comes and goes in severity. Some days I barely notice it but if I do notice and think about it, the limp comes back. Is that indicative of MND?
When I was first diagnosed, I was having terrible cramps in my left leg at night. I changed my diet and totally swore off Diet Coke and the cramps have gone away almost completely. Anyone else experience that?
I have no real pain (except the occasional hand or leg cramp) or numbness that I thought were part of PLS. Does anyone else have the same?
I've noticed that if I have a beer or two I look like a drunk toddler. I haven't read anywhere that alcohol has an effect on gait but does anyone feel like that?
The other thing that's driving me crazy is the trembling. If I get cold or in a high stress situation (like my son being the closing pitcher or watching my poor Cowboys lately), my knee starts to tremble uncontrollably. My leg will get really stiff on those occasions too. I normally will need help out of the stands at games because of it. Is that normal?
Did anyone have EMG's or nerve tests before their diagnosis? I have a few friends who worry that I didn't have more testing.
I have read that PLS is not considered fatal but that the progression is around 20 years versus 3-5 with ALS. Does that mean that PLS is fatal at 20 years? My progression was slow for the first 2 years but the limp and my hand are just the last 8 months. Is that common?
Does everyone with PLS have bulbar problems?
Sorry for such a long first post, I'm just trying to figure out where I go from here. I can't work anymore because it's too dangerous so I'm trying to figure out what I can do.
Thanks!