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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!
 
I kept waiting for you to tell us about your EMG! Yes in my opinion you need one urgently.You are correct too that the diagnosis is provisional for the first few years. I am glad you are getting another opinion. Since it seems the diagnosis was made without an EMG I wonder what else was missed? There are many blood tests needed to exclude mimics for example. No not everyone with PLS has bulbar.
Btw I don't have PLS myself. I am FALS
 
Gee... how did I know this kind of Thread was coming?

As you wrote.
("I have read that PLS is not considered fatal but that the progression is around 20 years versus 3-5 with ALS.")... yes, you have read a lot about Primary Lateral Sclerosis.

Of the 1,049 words you wrote... your supposed diagnosis of Primary Lateral Sclerosis fails any indication of confirmation.

PS. Also as you wrote, ("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?"). PLS symptoms do not "come and go".
So, my opinion only, after reading your entire Thread, I think you are...
 
Huh? What am I missing? Are you mocking me? When I say comes and goes I mean only the severity of the limp. I always limp. I was hoping to get some answers/guidance on this site, not be ridiculed. My neurologist HAS confirmed that it is PLS.
 
Hi Bulldog

Have you been to a neurologist that is a neuromuscular specialist?

I agree with Nikki that you should get an EMG done by a specialist now and ask if there are other tests that have not been done yet.

My husband had ALS so I'm not so knowledgeable on PLS but wanted to confirm that you should seek the EMG and second opinion. Write down all your questions, it's really hard to remember what you want to know once you get in an office and all the testing and exams start.
 
I concur. The emg will help differentiate between PLS and ALS. PLS is usually only diagnosed after 4 to 5 years of strictly upper motor issues. I am surprised your doctors made their diagnosis without doing an emg and without the typical waiting period. Perhaps they based the diagnosis on when your first symptom showed and not when you came to see them.
Tillie is right. Bring written questions to your appointments. There is nothing worse than walking away from an appointment and realizing you STILL have no idea what to expect next, or what has been observed by your doctors. This forum is a great resource for finding out what questions should be asked.
The absolute best peice of advice is to see a neuromuscular doctor who specializes in Motor Neuron Disease. The lack of emg so far indicates, to me, that you have not reached the end of your diagnostic journey. Get a second opinion as soon as possible.
With regards to the trembling. I get the same. With me, it's due to my spasticity increasing with high emotion (always with the sports!) and change in temperature. Spasticity can change in intensity, but will not go away.
~Fiona
 
As you wrote...
("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?")

In true PLS a change of diet does not resolve cramps and Charlie Horses. There are only a couple of medicines that help those symptoms in PLS. I'm sure you'll read further and reply.

Finally as you also wrote,
(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.")
If any other neurologist were to read that (and your entire Thread) he/she'd be shaking his/her head in disbelief... like I am.

This is a forum... some coming replies may make you feel "at home"... some you may not like. This reply may make you happy though... I will make no further replies to your Thread.
I highly and seriously doubt you have Primary Lateral Sclerosis.
 
Fiona, thanks for the reply. Yes, my spasticity is always there. I have drop-foot and weakness in my calf on the left side. I've noticed lately that I will get a little trembling on the right side when trying to do my stretching exercises. The neurologist was highly referred and told us his specialty was MS/ALS and MND's. He based the diagnosis on the fact that it has been almost 3 years now since my first symptom and that I still have good muscle structure. We are definitely going to get the 2nd opinion at UT Southwest, they have an entire MND department and are considered tops in the field locally. I can't get in until January so was hoping to compare notes with folks here and maybe find some new questions I should ask. Definitely feel an EMG is warranted.
Clint
 
As you wrote...
("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?")

In true PLS a change of diet does not resolve cramps and Charlie Horses. There are only a couple of medicines that help those symptoms in PLS. I'm sure you'll read further and reply.

Finally as you also wrote,
(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.")
If any other neurologist were to read that (and your entire Thread) he/she'd be shaking his/her head in disbelief... like I am.

This is a forum... some coming replies may make you feel "at home"... some you may not like. This reply may make you happy though... I will make no further replies to your Thread.
I highly and seriously doubt you have Primary Lateral Sclerosis.
The change in diet was suggested by the neuro who said I was ingesting way too much caffeine a day and that has eased my nightly cramps. You seem to be very knowledgeable, maybe you could use that knowledge to be helpful instead of attacking. I've been through much more than just my first visit with my neuro, but as you pointed out earlier my original post was very long and I was trying to condense.
 
Hi Bulldog, Sorry you are going through all of this.

I agree with Nikki in that you definitely need an EMG. Without one, I don't think they can definitely say PLS at this stage.

I am relatively new here and to all of this so my knowledge is rather limited. All that being said, I too had a two-level cervical discectomy fusion with cage. It was pointless. But, perhaps, psychologically I'm glad I had it done.

From my own experience, I can't even stress enough how important it is to seek out other opinions. Without getting into wordy details, I was originally diagnosed with PMA abroad. I also did seven months of IVIG to rule out MMN even though I didn't have conduction block, etc., My current and reputable specialist neuro believes it is upper motor neuron-dominant ALS. They're worlds apart.

So seek out more information and definitely get that EMG and blood tests to rule out mimics. If anyone on this forum knows her stuff, it's Nikki.

Let us know what happens. And, of course, (sadly) welcome to the forum. You will find some amazing people here.

Cee
 
UTSW is an excellent clinic. I am an MDA PLS patient there for 11 years. They will definitely give you the required tests to get a tentative diagnosis. I say tentative because it really takes about 5 years to get a confirmed diagnosis. I have Bulbar PLS (starts with speech) and was given a diagnosis after 2 years. Bulbar ALS progresses quickly and they said I would be near death if I had ALS.
 
UTSW is an excellent clinic. I am an MDA PLS patient there for 11 years. They will definitely give you the required tests to get a tentative diagnosis. I say tentative because it really takes about 5 years to get a confirmed diagnosis. I have Bulbar PLS (starts with speech) and was given a diagnosis after 2 years. Bulbar ALS progresses quickly and they said I would be near death if I had ALS.
BillBell- do you see one particular physician there? I originally was too see an MS specialist but once my current neuro made a diagnosis of PLS they wanted me to see someone else in the department. I'm sorry I'm asking so many questions guys, my neuro gave me the diagnosis some baclofen and prednisone and told me to come see him every 3-4 months. He didn't offer much advice or education on the disease. What I've learned I've gathered from the good old interwebs.
 
Bulldog, Never apology for asking too many questions. That's what this forum is for; help and support. Cee
 
Hey Clint
I'm so very sorry you find yourself here. I'm 43 and have just (September after 3 3/4 years of symptoms ) been diagnosed with PLS. My symptoms started in my right leg. Then right arm.
I too hoped a couple of operations on my hip and shoulder would correct things, but thankfully before we got that far I was told it wouldn't help.

I so feel your pain with doing things with your young bloke. That's the hardest thing for me, my kids miss out on "me".

I do find amongst us PLSers we are very similar but different. No question about progression is silly. We don't know if we don't ask.

All the best with your EMG.

I can't (and won't ) diagnose you but will be here to support you on this journey.

God bless, Janelle x
 
Clint,
I'm sorry your question proved contentious but as Al pointed out, it just doesn't make sense that anyone, much less a neuromuscular specialist, could diagnose you with any MND type without EMG/NCV testing. The diagnostic criteria certainly require those tests (which show different patterns for PLS va. ALS vs. lots of other things). So we're sort of like, ummmm.....Without those tests, your symptoms could be a host of things.

I'm glad you're going to Southwestern and am sure you'll know more soon (obviously, not soon enough). Meanwhile, there's a sticky here on getting a second opinion that might help you in terms of getting your records together and writing a summary sheet. The timing/duration/intensity/consistency of specific symptoms before and after the surgery could be important and is easily confused in conversation so I would write that up. It's very likely that some of your chart notes are muddled already.

Meanwhile, I would stop reading about PLS and all other diseases. Enjoy your holidays and have some adventures, with and without your family -- gather ye rosebuds -- before you go to Dallas.

Best,
Laurie
 
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