Jpls?

[clover]

Hi I'm new to this forum thing so I'm sorry if I'm not posting correctly or something. Also, I'm not very good with words so I'm not really sure how to explain but here goes...

So I'm 17 years old and ever since I was about 9 I've been experiencing some weird symptoms. I first felt this strange sensation in my legs and arms when I'd be running fast like I couldn't really control my legs or arms properly. It then progressed to sometimes happening when I'd stand up from sitting down or something. It now seems to happen every time that I stand up, sometimes even when I'm walking regularly, but I'm pretty good at hiding it so no-one really notices. I've also noticed that it doesn't happen as often in the mornings and during the holidays when I don't have to walk around a lot so I think it might get worse the more I walk. The symptoms actually stopped for a whole year in 2011 but came back in 2012 which was weird. I told my mum in 2010 and we went to the doctor but he said that it wasn't a physical problem and it had something to do with stress but I'm sure that wasn't the case. From then I've told my mum that it stopped because I didn't want to go back to the doctors.

I've been watching this TV show called Beaver Falls and the main character has ALS so I thought I'd check it out and I came across this thing called Juvenile Primary Lateral Sclerosis and it seems to correspond to my symptoms. The symptoms for JPLS call for clumsiness, muscle stiffness and weakness in my arms and legs but I'm not sure if that's what I'm feeling or not so I thought I would ask this forum and see if you guys could help me.

 

[ottawa girl]

Clover,

Please talk to your Mom. No matter the reason for your symptoms, you ought to have it checked out by a doctor. Many things can cause the sensations you have including hormones, lack of an essential mineral, anxiety etc.

Why sit and worry? Take control of the situation. Trust that your Mom will be there for you and see your doctor. If, for some reason you don't like your doctor, find another because it important that you are comfortable and trusting of his/her opinion.

 

[Tokahfang]

I'm probably in the best position to help. I have had upper motor neuron disease since age 14.

The first thing you need to understand is that when "weakness" is on a neurological symptom list, it doesn't mean feeling weak. It doesn't even mean being bad at lifting heavy things or not being able to do things for very long. It refers to what is called clinical weakness, which measures whether you can do certain motions against both gravity and the doctor resisting you once. This is is an example where the english language meaning of weak and the medicalese meaning don't match.

Weakness doesn't feel like anything in MND's like PLS and ALS. I know that sounds strange, but it is true. My earliest symptomatic moment I can look back at in hindsight was a gym class when I was 11. There was a 'high jump' of 2 or 3 feet we were supposed to do, with a run up. It was just to teach us the concept, not be athletically challenging. Everyone else in the class managed fine, some caught their foot on the bar or didn't have good form, that kind of thing. I ran straight into the bar. I just figured I messed it up, and I tried it over and over, until the teacher moved us on to the next thing. I never got it, and I never managed to do a manuever like it since. But in all that, I never felt weak. I just felt like a mysterious failure. By the time a medical professional got around to telling me my legs were weak three years later, I simply didn't believe them. I felt fine.

Similarly, even when your limb control is not good, it feels like it is. I can't count how many teenage falls I put off to being bad at sports or other excuses. It is like once your brain has sent the "let's do this!" message, it just assumes it worked. Muscle stiffness gets written off as "not very flexible", and I pulled that line even once I couldn't do a single sit up anymore. Because although I was obviously very athletically ungifted, I never felt out of control. I always felt that if I worked harder, I could manage.

Juvenile MNDs progress very slowly and are a lot more subtle than their adult counterparts. So many of the quick and easy things we tell worried adults don't necessarily apply. What I can tell you is that if you feel things going on in your limbs, and your neurologist doesn't detect it on his tests, that is the opposite experience from PLS. Even once you know you have the disease, it'll take you by surprise. I lost two points of strength in my tongue without noticing!

That wasn't the only malady I had in my teenage years, however. I also developed a pseudo-seizure disorder. I would have minutes to hours of convulsions. When the neuros told me that it was conversion disorder or write it off to stress I didn't believe them. (Neither did my parents!) That was crazy, I thought, how could my mind cause hours of flailing about? So I never followed up with a psychologist. When the condition hospitalized me finally, I met with a neuro-psych and he was a truly gifted man. It took me years to take what he said seriously, and I wish it hadn't. He rightfully identified that I was operating under terrible stressors - I was in horrific pain, living off of handfuls of OTC pain pills - and that my subconcious was trying to get me to stop. I really did have conversion disorder. Even now, at 31, I have flashes of it occasionally, but now I take it for what it is: communication. Psychosomatic disorders exist, and they need to be taken seriously as well.

Here is my advice. Be honest with your mom. Get an appointment with a psychologist. Let them do their thing. If they give you a clean bill of mental health, you can take that to a neuro and get your symptoms checked out more deeply by him. I don't think PLS is is the realm of things you have to worry about, but there are both organic and psychosomatic things that can cause the feelings you are experiencing. If you want, I'd be happy to chat with your mom if you think that would help.

 

[billbell52]

I am sorry to hear about your symptoms. Your symptoms do sound like JPLS but it is a progressive disease so I am confused about it getting better for a year. These type of diseases are incredibly difficult to diagnose. A regular doctor won't have a clue. I would recommend a referral to a specialty clinic like the Mayo clinic. I was very frustrated getting a diagnosis. I went to over 15 doctors and I only got a diagnosis by going to the MDA/ALS Clinic. I still think I got a disease called STARI (tick disease) at the same time my first PLS symptoms appeared which added to the confusion. There is no test for STARI so I can't prove I had it.