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I don't know how to start this, only by asking some questions. I know you guys can't diagnose me or anything, I'm working on things-I just want to know if some of the symptoms I've been having for years are real.
I had the muscle twitch test done, and the docs thought I had PLS. I had a lot of MRI's done, and they showed up good. If they weren't looking for MS would they still notice it? It was state of the art equipment-very few places have it I'm told.

My reflexes are very hyperactive, gag reflex. I sometimes swallow the wrong way, and choke, tripping over my feet, emotional liability-crying for no reason. I had muscle twitches all over my body, but they went away. I still have strong leg jerks in back and legs-myoclonic. Sense of smell seems way too strong. I get cramps in feet and hands if I carry or hold onto something too long.
Main problem is pain in back and legs, and stiff neck. Most days is it there 95% of the time. When I get very sick, I can't move at all-no muscle strength (I got a UTI infection). I couldn't get out of bed for many hours-only move my fingers a bit, and then when I could, I couldn't walk very well-looked like a zombie person walking. :(( Sudden changes in temp make things bad, as well as high humidity+heat (not dry heat) and cold temps.
I had low b12, but got that replaced, and now it is 1452. All other lab tests (blood) are ok that I know of. It seems to have helped with endurance. Not pain.
They thought lithium might help, so I'm taking that. For 3 years, things have been mostly the same, except small twitches have gone away.
I'm going to new neuro-what should I ask? Can infections take away all strength? It was very scary. The docs said don't get sick, and don't get a flu shot. I don't understand why. They also said I may never know what I have, but they would after they did an autopsy. Can some people with PLS live with it for 30 or 40 years? or only 20?
oh jl73!
we dont ofton say this on the forum but my honest opinion after having this 9yrs yes,it sounds exactly like pls.
i have all the exact symptoms you have.

mri's dont show up grey matter or umn lesions/loss.
a mrs (mr spectoscropy) can show umn disfunction in some,though it is used to follow desease progression and not to diagnosed
pls is a clinical diagnosed during life,confirmed on postmortom.
my neuro said exactly the same,he will know more on autopsy:shock:...........not very comforting is it:roll:
your neuro can diagnosed you based on clinical findings so ask about this.
if you need any pls info i have tons of stuff you can look at.
its good to build up a descent amount of knowledge on pls as most neuro's know very little about it,in fact i would say the experts are the pls patients.
if your neuro knows you are informed they will be more open to discuss things with you.

finally,sorry,welcome to the forum.
you will find all the help,advice and support you need here.......also great friends:)
True Olly, very true, these absolutely sound like text-book Upper motor Neuron problems. Olly good advice and support, as usual my friend..::p
sorry i missed something about infections.
at the clinic i go to the neuro there said any type of infection no matter how small is bad news.
it can increase spasms and other symptoms ,so its imortant to keep as well as possible and get any other health problems sorted quickly.
i too used to get chronic fatigue so bad i would be bedridden and unable to move,excessive heat or hot summer weather wipes me out.

hoping,thankyou are too kind dear friend:grin:

Do you still get chronic fatigue? If not, how did you fix that?
more pls

It's me again. They first thought I had ALS and wanted me to get a will and a nursing home fast. None of the terms were used, but they mentioned the one drug that they didn't know if it did anything, and something about the body doesn't do well without the nervous system-it just decays-no other word for it.
Some other things- they asked me if I was really strong in HS. I said yes, even the football players were jealous. I'd run all the time. Does exercise have something to do with it?
I've read it doesn't cause it, but have found can make it appear sooner avg 7 years.
One more thing, I think b12 was a real problem-it might have been severe too-causing anemia and nerve damage. Since I've got it under control, things seem to be slightly better-I can walk much longer now. Could this have something to cause it also?
Why does infection make things worse? Even allergies makes me weak and some drugs. Always in legs more than arms, unless it is really really bad. There are definitely times when I can do things like rake leaves and wash the car without feeling bad, but a lot of the time I'm too tired.
Could I have ALS that is hardly progressing? I basically haven't changed much at all since 3 years ago. My muscles seem fine. I am really thin and can't put on weight, even though lithium is supposed to make you gain it. I guess I'm in denial but waking up. I'm still the same old person whatever it is or isn't.
i too used to get chronic fatigue so bad i would be bedridden and unable to move,excessive heat or hot summer weather wipes me out.

I had exact same thing, also my spine seemed to feel like it was throbbing in my back.

firstly, it sounds more like pls but not als .
providing emg's are clean they can diagnosed pls after 3yrs of symptoms.
with 3yrs of symptoms and not much in progression it is less likely to be als.

i am not sure on technical reasons but i was told muscle spasms,clonus,myoclonus are very sensetive to changes in the body.
i suppose its like with other chronic illnesses that if you get a cold or infection it can exaggerate or make your symptoms worse.

as for good days ,we can get them but need to be carefull not to think "yippee" and go mad doing as much as we can.

in answer to sral,i do get fatigue but not as bad.
i suppose in the early years i was still trying to do as much as possible,now i am less active my body does not get overworked.
having said that,i still can not sit in the sun if its too hot and sometimes even if i am inside but its hot i can get severe fatigue.
also another point............i think some severe bedridden episodes of fatigue were probably caused by acute umn lesions.
got to go,talk more later:grin:
mine seems to be more cold or cold-hot changes. I get stiff whenever it is cold. The heat thing is less noticeable, but more disabling when it happens and I just have to lay in bed. I'd say it does affect my overall endurance on those days. All in all, I'm still pretty active when I need to be-I just have to use more of my strength to overcome it and feel quite worn out-nothing left. These things were the first things I noticed. Then I started having the myoclonic jerks, and muscle spasms-but they've quieted down.
I'm going to wait until I have more information before I start making final conclusions. I've had severe b12 deficiency for probably quite some time, which definitely caused symptoms, and hopefully that is the whole story for me. I'm finding some improvement from the shots for sure. If not, I'm grateful that it doesn't look like als, and that the people with PLS have some time to adjust to whatever happens, and hopefully to find some treatment. I've had experience with not being able too walk far, so being in a wheelchair at some point, I'd be ok with it, if that's what happens. I'm supposed to try minocycline also. Not sure what to expect there.
UMN problems can really be bad in the cold. If I am cold it takes hours to stop shaking, teeth chattering, uggh.. I love warm bath's. Now the problem is getting in and out. I have a couple of heating blankets, love them, only problem is not falling

I've been told I most likely have PLS and my symptoms are cramping, lots of spasticity, muscle twitches, hyper reflexes and sometimes fatigue. Lately, I've noticed my grip getting fatigued (like when gripping the steering wheel).

Your prolonged B12 problem doesn't help with your problems. My B12 is okay.

You could have PLS but I would hope for something less debilitating.

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Hi, I noticed you are in lansing, where you going to a neuro by MSU? Where is your new Neuro located? Is it an ALS clinic? I was wondering because I go to Wayne State/detroit medical center, they have an ALS neuro dept that is MDA approved. The doctors are good and take lots of time with you. I spend a few hours with mine and she will see me whenever I want to re-check me when I am nervous.(I always joke with her that I am bad rash that she cant get rid off!) I know it would be about 1 hour and 45 mins to get there but worth it. I dont have Als diagnosed, alot strange sx, but still not sure.
I wish you well, and I would think 3yrs of this and no real progression that it is most likely not als.

I'm in Chicago

I haven't updated my contact info.
I'm just going to go once. They have too many people to see for me to make a lot of repeat visits. I assume (hope) they will say you're neurotic, stop wasting our time and send me along. Whatever it is, there's not much they can do right? I'd rather the doctors spend time with those patients they can make better. I'm pretty sure even if I got some sort of diagnosis, no one would believe it-other than that one person who diagnosed me-the same way some people don't believe smoking is bad for you. I'm already getting snickering and disbelief for even bringing up the possibility. Malingerer.
When/if they can really treat things, that's a whole different story..
I just know when I get really sick with chills+hot shower, I can't move no matter what. Even breathing is a chore. I'll have to remember to not do that.
hi jl73

your symptoms are suggestive of umn desease,you have clinical findings of umn desease.
why would a neuro think he was wasting his time or think your neurotic?
you have just as much right to medical attention as anyone!
there is no test to diagnosed pls,it is rare and most neuro's never see a pls patient but its very much a real form of mnd.
at your next appointment write down all your questions to ask,insist everything is explained about the exam findings.
it seems they know already something is wrong but have not committed to a definate diagnosed.
by the way has it just gone 3yrs since symptoms? they will usually only give a definate diagnosed of pls after 3yrs.
if you want any info to read i can give you plenty,just ask if you do:smile:
I think it is 1) because I was low in b12, and 2 because the last neuro just blew me off completely, didn't even ask about symptoms-just did a few tests-I wrote everything down, but it was apparent she didn't read any of it. She was maybe the worst dr (very young-maybe 25) I've ever gone to-yelled at me. I'm also look really healthy. It's mainly when my body temp goes up or down or I get sick do these drastic things happen, otherwise it's just constant dull pain and some general weakness, except for that rare day that I could count on one hand when I feel great. Also, I can't really jump inside someone else to see how they feel from day to day.
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