New PLS diagnosis and lots of question

[Tractor Boy]

Hey Clint, considering all the above replies, I think it's safe to assume you've found the right place! These folks know what they're talking about, trust me. But with MND's, every case is unique and nobody knows everything.

I just recently read things I didn't want to hear. So you can't be thin skinned.

Welcome to this forum. Ain't nuthin but a parTAY! TB

 

[Bulldog29]

Thanks everyone for the replies, I'm not sure why the neuro didn't order the EMG but rather based his diagnosis on the totality of my symptoms and previous tests along with the blood work and spinal tap. TB, I'm pretty thick-skinned, you have to be to work in construction, just found it very off-putting that someone was accusing me of "faking" PLS on my first post in these forums. Live and learn.

 

[billbell52]

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.

Everyone there is excellent. They all consult with one another. They will run you through a battery of tests, blood samples etc. They will start ruling out diseases. For a while I was being treated for MG. I had a special test for Kennedy's disease. I had a spinal tap. PLS is so rare it will take a while to get even a tentative diagnosis. I currently see the director of the clinic, Dr. Elliot. Unless you want to wait forever you won't see him.

 

[traveler1]

Hi Bulldog!

Welcome to the PLS club! This forum is filled with funny, knowledgable, wise and caring people and even though I rarely contribute (my bad!), I truly appreciate all they offer and I'm sure you will too.

I know that many here are surprised at the speed with which your neurologist suspected PLS, and that's reasonable since the vast majority of neuro's are so reticent to make the diagnosis. (And yes, the patient is supposed to be observed for a number of years before earning the PLS acronym.) But I believe your neuro was just being very forthcoming and sharing his hunch with you. It's odd that you didn't have an EMG/NCV (not bragging, but I've had four!), but I'd bet that they'll be included in your next round of appointments.

I really wanted to chime in today because we share so many of the same odd symptoms. We even started to notice something was wrong while sporting it up with the kids. In my case, my upper body moved right to hit a tennis forehand but my right leg didn't play along...down I went. I didn't fare much better while skiing with my family; I got slower and it became immeasurably harder.

You mentioned that your limp comes and goes in severity; I don't find that to be at all odd. Spasticity is one of PLS's hallmarks. In my case it increases and decreases in direct relation to a variety of stimuli...or lack thereof. If it's cold, my legs freeze up; if it's warm out, I can walk semi-normally. Emotion is another exacerbating factor, whether it be a high stress, no fun situation, or, as you mentioned, watching your son pitch the closing inning. I haven't left a ball field or an auditorium after watching my boys, all on my own steam, in years. I'm a zombie. So if spasticity is what's causing your gait issues, then it totally makes sense that it comes and goes. I'd include your question about your trembling legs in this category, too. I get that, as well.

I wouldn't worry about the 20 year prognosis. I'm not sure there's much to back that up.

I haven't had night-time cramps for a while now. They came and then mercifully left! One thing you might try is using an exercise band with a loop on the end to put your foot in, and then holding the other end, so as to hold your foot/leg in a cramp-breaking position as you go back to sleep. It worked for me. And there's always a nice bedtime banana...chock-full of potassium.

Pain isn't usually listed as a PLS symptom, but many of us have it from time to time. Likewise, sensory issues definitely aren't normally in the picture, as PLS affects motor, not sensory, neurons. I'm a medical enigma (my third neuro told me so!), however, because i do have some slight sensory deficits...so who knows?!?

I drink very rarely, but when I do indulge in a glass of wine (or two...sshhh!), I, too, resemble a drunk toddler. It really doesn't take much. What a show we'd put on if we all got together for happy hour. Oh my!

I don't think I hit all of your questions, but I gave it a shot! Good luck with your second opinion appointment and keep your spirits up...PLS is slow in progression and we humans are remarkably adaptable!

Cheers, Namaste, Peace-out, etc.
Traveler (This code name thing is kind of fun!)

 

[old dog]

Hi, Bulldog. Traveler 1 has said many of the same things I would say. In the early stages, there was a great deal of variation in how I walked, depending on how tired and/or stressed I was. I still completely "freeze up" if I get upset and can barely move my feet. I didn't seek treatment or a diagnosis until age 70, because I thought my symptoms (toe drop, back pain, stiffness, etc.) were due to arthritis and old age. I went through physical therapy three times, and, each time it provided temporary relief. Then, suddenly, I became unable to walk up stairs or keep my balance on an icy sidewalk. I have always had an unusual speech pattern, but started really slurring my words when tired. At that point, I knew something more was wrong. After about 18 months, I was referred to the movement disorder clinic at OHSU, where, following an EMG, I was given a preliminary diagnosis of PLS. I think my chart says ALS with a secondary diagnosis of PLS.

At first, my progression was rapid. I went from a cane to walking sticks to a rollator walker in about 18 months. My voice is completely gone, but my swallowing is still adequate to allow me to eat everything, although I must eat slowly. I have been fairly stable for about three years and don't have breathing issues. Every case is different. Wishing you the best!

 

[TxRR]

PLS symptoms DO come and go! Some days I walk better than others. Some days my legs are more spastic than others. Some days my gait is better than others. I was diagnosed with PLS in 2006. Beer does effect your balance. I drink on a regular basis and have fallen many times. Staying hydrated is a big part in relieving muscle cramps. I drink a lot of low calorie Gatorade and childrens Pedialyte and have zero cramps.

 

[kfletcher]

I'm also surprised that a diagnosis was made without an emg test being done. During my years of finding a diagnoses I couldn't even begin to tell you how many emg's I had. Along with MRI'S, spinal tap, CT Scans, bloodwork. It took 3 1/2 years before I was diagnosed. So it just seems like you dr is jumping the gun on his quick diagnoses of you. I would do just what you are by looking for another opinion and then being able to be more secure with what they say you have.
I also had a continuous limp with the left leg, I had pain in the low back, hip,ankle & foot. Developed drop foot, and eventually was kind of throwing my left leg forward, because my knee hyper extended back so far, my knee just didn't work. Good luck and I look f to hearing what your results front this new dr are gonna be.

 

[Bulldog29]

Traveler-thanks so much for your reply. It's been about 3 months since my "diagnosis" and I've really had a hard time accepting it. I feel blessed to have found this forum. I know now that I should have the EMG, but seeing everyone's comments about their experiences and how they're much like my own makes me feel better regardless.

TXRR-Thank you! I too have good and bad days. Mix a couple of beers and another Cowboys' loss and I can barely get up off of my couch because my leg is locked up. I did Pedialyte too when I was having the bad cramps at night, it helped quite a bit.

kfetcher-Do you use an assistive foot orthotic for your drop foot? My doctor prescribed one for me last month. It's a custom one so I'm waiting to get it still but will let you know how it works out. I've been having back pain issues too lately but I'm hoping it's just from over-doing my rehab.

 

[kag0909]

Hi Bulldog- my father has been recently (tentatively) diagnosed with PLS. He has a foot dragging problem that has resulted in so many falls that he fractured his back this summer. As a result he was sedentary a lot and had a pulmonary embolism.
We went to Johns Hopkins today and they are leaning towards a PLS diagnosis (along with our Penn doctor's rec). We are getting another EMG for him as they will not definitively say it is PLS until they read that. We are seeing a MND specialist at Hopkins who was recommended here to me.
My advice, and I may not be the best at giving it as we are early in diagnosing too, is to see a MND specialist if you can. Our neurologist told him he thought it was PLS but only because we have ruled everything else out. We are fortunate that Hopkins is driving distance away so they can treat him.
Honestly, our experience there today was amazing. I felt like it was the first time a doctor really listened to my dad and his complex health problems.
Good luck!

 

[RedDawg]

I am a 60 year old female. After two years, 4 neurologists, brain MRIs, EMGs I was finally referred to the UNM ALS clinic I was diagnosed with PLS last month. The doctor told me my diagnosis by doing only a physical exam where he checked all my reflexes and watched me walk down the hall. According to him PLS can not be detected by EMG which I had 2 and both were negative. He said it is very rare and hard to diagnose. I am on a walker. My left leg drags and my knee locks up too. I have fallen eight times in a year thus the walker. Mine however; started with choking and then slurred speech and then my left hand and leg went. I also have PBA. I too have so many questions.

 

[lgelb]

Red, you're right, the EMG is not used to diagnose it, but to rule out other things. Sorry to hear your news.

KAG, also sorry to hear about your dad.

Stay ahead of the falls -- get a manual wheelchair when it's time.

PLSers, just a reminder that the ALS threads here are a lot more active and while your symptoms are a bit different, they're close enough. So please hang with us there as well, especially for any questions. And don't forget the Search dropdown in the blue bar on every page.

 

[Nikki J]

Laurie makes a good point. You all are welcome to post in the ALS sections any time you want. It would be worth mentioning in a post though that you are PLS or HSP simply because it may make a difference in an answer when we know you probably have a much longer timeframe/ slower progression than the average PALS. I wish we still had the ability to free text our forum interest or we had more options in the dropdown

 

[Bulldog29]

Red-that sounds like the same exam I had with my doctor when he diagnosed me. He too said that all tests would only rule out other diseases. I've been lucky so far that my falls have all been minor, other than a broken finger (and bruised ego) the half-dozen or so times I have fallen haven't been bad. Regardless, I've been "grounded" when it comes to work.

 

[RedDawg]

Bulldog and Lyell. It's just so good to find this forum to share. Sometimes I wonder if

 

[kfletcher]

Bulldog, I did wear an AFO Brace on my left leg from thigh, because my knee hyper extended back, making it look like my knee or leg would snap and break, all the way to under my left foot. Now that my right leg has given out on me...I now have a power chair I use. But started in 2004, Walked till 2014, so 10 years. I guess I can't complain to much.