Some UMN Questions if you don't mind

[Guest]

HI Folks

I have a couple of questions. Most of my symptoms (other than my arms) seem to be UMN according to my neuro.

I did email her, but wanted to ask those of you with real life experience if this is normal UMN type of thing or something else.

My pain levels are increasing quite a bit. I'm continuing to take the Baclofen and the Valium, but my legs still feel as though they are in a constant spasm and hurt to the point I can't sit still. They are also swelling quite a bit. The swelling is painful--but the pain is in the entire leg from the thighs down.

If I try and walk--the pain is just absurd, and I have to stop.

I do have fibromyalgia, so what some experience as discomfort is painful for me--so my question is--do you guys with PLS have pain that is pretty severe or am I needing to look elsewhere for a cause?

My neuro insists I not let them do any surgery on my neck or back--she feels it will worsen my overall condition. My Pain Management doctor thinks the ALS neuro is nuts--but the neurosurgeon says I'm definitely not a surgical candidate--and that those issues in my spine don't account for the signs he found (atrophy and UMN signs) The neurosurgeon and the neurologist are on the same page--only the pain management doc is insisting I'll get "better" if I do her treatments.

Thanks for any input. I didn't post this in the "DO I HAVE" because with these symptoms, it doesn't matter--my legs are definitely UMN related according to the doctor--regardless of the eventual diagnosis.

If this pain is normal for UMN--what do you use to treat pain?

 

[Guest]

well notme am not you..but since you asked this is my view....umn is painful..spastic stiffness...baclofon weakens you so you dont walk and cos you dont walk yer legs swell...u need to walk by hook or by crook,,yer gotta live with the pain...u get better at it,,trust me..u will be heathier somewhat..and valium, why take it...to mask how u feel..well it aint helping is it....u cant sit for long, stand for long , lie down in comfort and walking is the pits...but u can manage it....its all u got cos there aint no other answere....god bless. the pooler

 

[Guest]

My leg muscles are spastic all day but particularly at their worse when I first wake up. I'm off of baclofen and on a vigorous stretching routine. I tried stretching some time ago and got nothing from it because I was doing "panzy" stretches. I moved the routine up to a manly man's level and now get some benefit from it all.

Stiffness and cramping don't exactly tickle, do they?

 

[Guest]

pain is a part of life for me. I use to get shots in the back about once a year from the pain management doc. But he would charge $1600 a shot and sometimes he would give me two in one visit! My insurance only covered 50%. I decided since the shots only were good for about 3-6 months, they were not worth the cost. I have learned that management for me comes with knowing that I live at a higher pain level than most. I was also diagnosed with fibromyagia back in '96 but my doc now (who is not the one to give me that diagnosis) does't think that I have fibro. Whether I do or not, I am in pain 24/7. To ease it I limit the amount of walking time and I get up and stretch frequently. I use my power chair for when I need to be moving about for long periods outside of the house. My hubby has become a great massusse and only works on the areas that bug me most for that day. I take pain killers when things get bad (anything above a 7 on the pain scale). Since I have gotten the pwc, my consumption of pain meds has gone down significately. That I am happy for! Baclofen and tizanidine are still the two drugs I take daily, but usually only at night before bed.

I hope you find something that works for you. No fun with all this pain that is for sure!

 

[Guest]

The Doctor emailed me back. She's saying now that I need to see her ASAP and to wait for her scheduler to call me. She said I shouldn't be paying out of pocket for Pain Management (which i already know, but ALL of the pain management docs here charge -- don't take insurance)

But she ALSO says I shouldn't be on oxygen with possible ALS. Did any of you know that? I'll probably ask this one over on the aLS side.

 

[Guest]

Hi All, so far I don't seem to have too much cramping pain with my version of ALS... but I've had sciatic nerve, arthritis in my lower back, and a chronically sprained ankle (which became my first sign on ALS when it "dropped"). I've also been using magnets to control the pain for more than 15 years, and have been learning Reiki as well.

In a nutshell, my sciatica I had was SO BAD that it felt like heated daggers running down my butt and legs – and being pregnant when it was at its worse – I started using magnets which I still use today.

PLEASE check into Nikken.com and see if you can find a dealer in your area that you can talk to about possibly borrowing one of the products, as most have some products they lend out for a couple of weeks... I got my magnets originally through one of my brothers who was selling them, and I thought "Hah, it's like snake oil..." But he insisted I try it out, and lent me magnet shoe insoles (Mag Steps) and after wearing them for a couple of weeks I realized that the only time my left ankle hurt was when I wasn't wearing the shoes with the magnets. I now have magnet mattresses for my entire family, and still use the insoles (with my orthotic), am sitting on a magnet seat cushion right now, have back pads (which is also good for calming coughs) and more.

I DON'T sell this stuff but please see if it will help you, I feel really bad that not many people know much about these and they've helped me so much. Oh, it will also help swelling as well as the pain. The main thing to remember is to give it a couple of weeks before you decide if it's helping you or not, as it may feel actually worse at first. And to drink LOTS of water.

One other item: I bought a magnet "pet pad" for my son's crib when he was about 2 years old and having night terrors EVERY night... they stopped almost entirely after about 2 weeks of using it.

I'm not an expert in why these things work, but I know they work for my family and friends... please, if you have chronic pain, check into a quality magnet to help control it, there are several good brands out there, but I've only used the one I've mentioned before. They're also available on the auction websites for probably a little less money, but it would be good to talk to someone who can explain all the ins and outs of the technology behind them.

 

[Guest]

I have a lot of areas that are in constant pain--mostly my neck and lower back--but my legs are what is drving me insane right now. I can't sleep. I can't stand to sit still. No position is comfortable--not elevated, not bent, not standing--definitely not walking. The swelling is getting a lot worse, too.

I have a class this weekend and next week. Somehow, I have to find a way to function--and right now, I hurt so bad, I can't think straight.

I've tried every darn med in my arsenal and nothing is helping. I know what you mean by the chronically sprained ankle--I don't know if that's what's wrong with mine, but it's my left ankle that hurts the most when I walk. It's the one that I scrape toes on, too.

If ALS isn't supposed to be painful--I'm holding out hope this isn't ALS--because pain is an understatement. I haven't slept more than an hour or two at a time in days. It's much worse in the mornings--and is what wakes me up.

I'll try magnets--at this point, I'd try anything short of shots in my back. Last time they put a needle in my back I was in the hospital for 10 days (very bad spinal tap)

Sorry--just very whiny. I don't deal well with any pain added to the normal pain I deal with daily. Thanks for the replies. My wonderful neuro is out of town until next week. The pain doc hasn't called back--but if they won't take my insurance, i can't see them anyway.

 

[Guest]

well notme.i was thinking...always a dangerous thing.......stroke mimics pls symptoms...what seperates the two symptoms....or the two causes i should say....pls could be a stroke u never new u had..yep...wandered off on one there..av a good weekend ...the pooler

 

[Guest]

Hi

i've had a stroke--I'm all too familiar with those symptoms. I had absolutely no pain when I had the stroke (just paralysis and severe weakness on the right side)

This is out and out painful. Kind of like restless leg syndrome magnified 1000 times. It's deep pain, though--massage doesn't help it at all--and nothing else seems to either. I wish my doc wasn't out of town.

My class this weekend canceled--I really needed the money--but am glad she did as I don't think I could have taught it.

I'm distracting myself by posting on here and watching a Harrison Ford movie marathon, but it's not helping a whole lot. I'm in my "only in case of emergency" morphine supply, but it's not helping either.

I don't know how you deal with this AKMom. I'm sure not doing well dealing. My balance is even screwey. I'm all wobbly. Again--sorry for whining. Just a really rough few weeks here. I'm definitely taking the baclofen and the valium (zanaflex stopped working on me eons ago)

I am wondering though what the difference is between PLS and UMN dominant ALS (though the ALS doc did write LMN and UMN found on clinical exam)

I keep hoping that it could be something else (I can be in that nice denial state as long as nothing is officially diagnosed)

 

[Guest]

notme this is me...from wat i gather...thers no pain with als..hope am right on that..my als mates will correct me on that am sure....and pls ls so rare..the odds are well in yur favour...hope thats cheered u....am patiently waiting for my autopsy to find out wat the dickens..and wen a do know am gonna take use all for the biggest booze up the world has ever seen...loves pooler

 

[Guest]

I was in 24/7 pain with my UMN for about a decade, bad enough pain that my pain tolerance allowed me to do things that consistently astonished my docs. It turned a corner for me when the neurons started dying off for real, paralyzing muscle groups but also bringing the pain into a reasonable place. Even after that a whole day without pain was a pipe dream, but it wasn't nearly as unrelenting. In my case it was mostly the effects on my muscles and joints from the spasticity and overusing weak legs.

 

[Guest]

I'm relatively sure my pain levels are due to several things--one of which being disc issues and severe spasms in my back that nothing helps, added to fibromyalgia and charley horses and leg spasms.

Normal pain I deal with fine--it's the ADDED pain that sends me off the deep end til I just think a nice bottle of 100 valium would just be the ticket I need. I'm TIRED of hurting all the time. I'm TIRED of not being able to find a damn doctor that will treat pain that doesn't want cash and will take insurance. I'm TIRED of a lot of things right now, to be honest.

The more I read on the forums, the more I believe that what I have isn't ALS--too many of my symptoms just don't fit--like reflexes of 0 in my ankles and 4+ in my knees and nearly absent in my hands and normal in my upper arms. How is that even possible?

Facial weakness? How? Why? I didn't even realize it. The doc wrote + tongue weakness and slurring. I don't slur that bad--and usually only when I'm VERY VERY tired. ALS, we all know, doesn't come and go. My slurring does.

Just doesn't make sense. Maybe this is all in my head and I'm a nut job that just needs to give it a rest and give up. ALS just can't cause reflexes of 0 in your ankles and clonus and 4+ reflexes in your knees and severe clinical weakness in your ilopsoas areas, I don't think (but might account for my leg weakness when I walk?). My clinical weakness areas aren't jiving with ALS. That's a GOOD thing.

But I can't deal with the pain. I can't deal with anything. It's getting to where every day I have to give myself a reason not to go drink myself into oblivion (and I'm NOT a drinker)

Depressed? Understatement. I'm beyond depressed. I'm not faking these things--I'm not faking the atrophy and loss of use in my hand, or the spastic gait or the weakness or anything--but it doesn't FIT anything, either. Just makes no sense at all.

Fed up. Tired. More than ready to give up. I just got my CT report on my lungs. I was really worried because I'm having so much shortness of breath I'm getting seriously concerned. It showed nothing but mild emphysema (which I knew) a 'growth' on my liver (that apparently regrew after nearly 10 years-had a tumor removed from there in 2003) and a calcified aorta (that's new, too) But nothing to explain why I can't walk and talk. It's not even an exaggeration. I simply can not talk and walk at the same time.

I must be doing something on the neurological exams I don't realize I'm doing to make them have such weird results--there is even a positive babinski--but no reflexes in the ankles at all. That's just not ALS or PLS or anything else I've ever heard of. All my strength is nearly normal in my upper extremities other than in my hands.

Sorry--venting yet again.

Thanks for listening if you read this far.

 

[Guest]

Dear Patty, sorry that it's all getting too much. It's darn hard just not knowing the answers. Clearly the things in your exam are possible, because they are happening. I wish I understood it all, and could help, but I don't have the knowledge to answer. You know it's not all in your head, and you can't do things during your examination to create things like clonus. People pretend to be weak during neurological examinations all the time, and the Drs have special ways to see right through it. You are not pretending to have weakness, you have nothing to gain.

You will get more answers when you have had your EMG. I know you are dreading it, but it's going to be helpful, even if it's only taking ALS off the table.

It just sucks to not know. I would just about do anything to have a clear diagnosis as well. It's wearying, tiring and darn well depressing. I am there with you my friend, and wish I could come give you a hug and make you a nice cup of coffee.

Hang in there. The sun will shine again.

Love Aly

 

[Guest]

O2 isnt the best idea to use for a PALS because I believe they become dependant on it then... i think it also gives the false feeling of being able to breath better and may do something with the CO2 levels too. Someone else can be more clear than I am.

Im sorry. I dont have words for you. Only tears.

 

[Guest]

O2 levels are usually kept very low, if used at all, on anyone with a hypoxic drive. normally no more than 2lpm--which is what mine is set at.