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notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,605
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
Hey Guys

I've been trying to refrain about posting here about my ongoing issues but really have nowhere else to turn other than the experts that live with this neuro crap daily.

Here's what's going on:

Falls: I'm losing my balance and falling--too much. Twice this week alone. My legs just wont support me properly. Not dizzy but it seems like I am. No balance at all.

Hands: I'm having multiple hand cramps per day. Very painful cramps that claw my entire hand then hurt for hours afterward. For those that don't know--the hands are the only area on my body with multiple-doc diagnosed atrophy and loss of function.

Legs; Spasms and more spasms. They hurt constantly from all the cramps and spasms. I am walking kind of like a duck just to keep upright.

BOdy: 2 years ago, the ALS neuro noted paraspinal core weakness. I'm having trouble sitting up without support as well.

I'm taking morphine, baclofen, valium, Lyrica and zanaflex--and none of it is helping in the least.

I even upped the dosage on the baclofen and am taking valium with the zanaflex when it gets really, really bad.

I've lost a lot of weight (intentionally) as I was at 200 pounds. NOw am below 150 since December. Took 3 months to loose all the weight. So, am pretty sure its not strain on taxed overweight muscles.

My legs are as hard as rocks most of the time--they look great--they are NOT. My only UMN signs are in my legs. Only LMN confirmed by EMG signs are in my hands. None in my legs-just UMN.

Im at the end of my rope. I can't concentrate. My daughter is being driven nuts because I cant do things I could do even three months ago. She has to do more and more. When I fall, I simply don't have the strength to get up. And I weight too much for her to lift me safely.

With my hand weakness I can't really use a walker much anymore--and my scooter will not work in my tiny mobile home-my electric wheelchair was lost when I had to move and had no way to transport it.

Any suggestions? Oh one last thing--I was really sick all of January--literally barely left bed as I had mega case of the flu.

Last thing is my O2 sats are dropping to the low 90's which is causing major shortness of breath with any exertion at all. I try not to use the O2 at the docs request (neuro) but am using the bipap most night.s
 
With the atrophy and emg pointing to lmn involvement in your hands you remind me of hoping4cure who was diagnosed with umn dominant als.

I get cramp and spasms in hands if i use them too much or doing something repetative.
I do have some slight atrophy in my left hand,its sunk in in the middle and a bit round the base of thumb.......as it has not progressed from a certain point i am sure its not lmn,actually i think it could be to do with the nerves being effected by my arm which is deformed after a childhood accident.
Leg spasms i can understand,core muscle weakness is something i also have.
I can not sit up straight for very long on a chair or sofa,if stood up doing something i hunch over.
Tried swimming but lower body just flopped,found out it was due to the weak core muscles.........i am going to get a konfidance jacket and try again this summer,i am hoping the jacket will help me keep afloat and help strenghten the core muscles.
I know my breathing while laying down is not good,ok upright........i use five pillows,i have slipped off them during the night once or twice and woke up not breathing and then panicking......not nice.

Has your neuro considered umn dominant als? seems an obvious explanation and diagnosed considering the spectrum of umn and lmn involvement.
 
Have you had a mus cle biop spy? I have alot of mus cle cramp ing and now developing balance prob lems and overall mu scle weak ness in neck, arms shoulders, hips, and legs. I have fati gue too. I have lost some stren gth is hands, noticed opening things is getting harder. I had a multitude of tes ts, mris, xraays, cts, blood but it was the biop spy that did it.
 
Hey Olly

I havent been back to the neuro for a year. Just too far a drive and I can't drive two hours anymore. I email with Doc -- but last email was more of "you need to come in" response.

She found UMN signs in my legs--spasticity, clonus and hyper reflexes and positive babinski--but EMG of them was normal.

EMG of both arms was not. When I first saw her two years ago left arm was the worst. Atrophy just started...now two years later, it's quite pronouced. Right arm was weaker than it should have been but not to the extent it is now two years later.

The hand is bad--but I've lost inches on my left arm. Not fractions of an inch--but inches. It's much tinier. I can still use the right somewhat--even after two years.

It's the pain from the spasms that is driving me the battiest. I'd been up 24 hours before I finally gave in and doped myself up with EVERY pill I had--lyrica, morphine, baclofen, zanaflex and a valium. FINALLY slept 6 hours.

The UMN is what is throwing the doc off--she isn't sure why I have muscle weakness in my upper body but not lower. And my FVC is in the 70s...though she suggested bi-pap due to my mega-low sats and not so great scores on the FVC--so I have one. The pulmonary doc gave me the O2--but she doesn't like me to use it. Said it's bad for ALS--even though she hasn't diagnosed me with ALS.

Just have to figure out how to make the discomfort stuff and cramps better. My only way to make income to cover my house is with my writing--and writing is just sooo hard now.
 
Go to the experts. Find the nearest good ALS clinic and make the investment to go.
My neuro dragged things along several months until I insisted on this referral and appointment .

You can then focus your time and concern on the disease that you actually have.
 
Do you think you doctor would be willing to email a strongly worded letter to your local ALSA chapter? You really need access to their loan closet.

The whole situation stinks. Has your vision held even?
 
Just fell again. Hurt my darn head, neck and elbow. I yelled for my daughter but she coudln't get to me in time.

I gotta do something, I guess. I'm apparently getting worse. My legs aren't dragging--they are flat giving out on me.

I have to find a way to get to the doc in Tampa--the ALS specialist in my area-but it's a 2 hour drive in a car that is 20 years old--with a fried tranny and sucky brakes and tires. Sigh. I just wanna sleep and not wake up for a few days.

Everythign hurts and I'm sick to death of falling and not sleeping.
 
I am so sorry. Living with all this is hard I wish I could wave a magic wand and cure us all. Do you have a friend that could drive you or is there a Van service you could call? Or a car rental, I had a friend that had a junker car to get around town but when they needed to go farther they would rent a car. We live in a real rural area and have no public transportation. I wish you peace. Hugs.
 
notme...does it really matter what diagnosed you have...there aint gonna be a cure......all the tablets in all the worid are not doing a blind bit of good are they.......baclofon makes you weaker ,,so you fall bum over whatsits..god knows what side effects the others have....a case of the cure being worse than the desease maybe....dont swill more pills......management is your way i reckon to get the best out of what you got.good luck johnny...
 
Gotta agree with johnny on this one. The amount of pills your taking to try and sleep will make your fall risk go up. That is why I cut back on the baclophen and tizanidine. Only take them at night most days. And take a extra baclofen if I get too tight during the day. Hope you get some answers and help.
 
Oh, I took them at night guys. It was twelve hours later that I fell. I think I might have a concussion. Im afraid to take anything now.

I laid down and slept for hours..and woke up to the same crap.

Oh, and guys, I am not taking anything I was not prescribed. I normally don't take it...bit it had been more than 24 hours since I had slept.

I had to sleep. Haven't taken a thing since last night because of my head, a afraid to, and my daughter doesn't want to do the whole ER thing.

Sorry guys. Just not doing well. Have gone back to using my iPad. I can type on it better as it doesn't tire my hands or make them cramp as much as the puter.

Things are just getting harder. Can no longer open bottles at all. I can hold a glass if I use my entire arm or twe hands. I still keep thinking that when whatever it gets bad enough, the docs will be able to figure it out better.

Thanks for the responses Johnny, Olly, vicki and Joyce.and Beky.and Bad balance.

I guess I really wondered if the UMN stuff was causing the balance issues and falling. I've fallen in the past, but this is absurd!

With my fried back, I don't do well from falls.
 
Oh honey, I am praying for you. You never did answer my question on the biop spy. I worry about you seriously hurting more than your pride. Please take care.
 
Hun, I understand you took them at night. Let me put it this way, your already at a weakened state. Thus you add the amount of muscle relaxing drugs and other pain meds that you took in order to sleep, and although it was 12 hours before and has worn off some, it's still not completely out of your system dear. Thus my statement that your at a higher fall risk. The times I fall more are the days after I have taken a co ck tail of drugs including the valuim, baclofen and tizanidine and maybe a narcotic if I was in pain, for sleep. I get many days that I cannot sleep well. There is some nights I wont sleep but 2 hours straight a night, for maybe a week sometimes! I don't know why it gets that way other than I am just plain uncomfortable. Anyway, about night 3 I will take the 'co ck tail' and end up with being weaker than normal the next few days. Thus I am at a greater falling risk.

So sorry your having such a hard go at it. Hopefully the doc can help you find a middle ground. But it is what it is. We sometimes just don't get to sleep and on falling days I use my pwc, which is about 98% of my time now, even without my co ck tail.

Take one day at a time, rest when your body can let you and do what keeps you safe from falls. I hope you do not have a concussion. Are your pupils evenly dialated? Are you nauseous? Those are signs of concussion. Headaches too.
 
Not me - So sorry you are having so many problems. I would think loosing 50 lbs. in such a short time and having a long-lasting flu bug would be enough to cause a large percentage of the difficulties you are having. I don't blame you for taking all the available meds when you hadn't been able to sleep, but agree with Johnny and the others who said cut back on meds ASAP.

I seldom have cramps that last for any more than about 30 seconds, but my balance is completely shot--can't stand at all without holding onto something. Try some Gatorade. Doesn't cost much and helps restore potassium and sodium levels. I take a prescription timed-release potassium pill which I credit with preventing severe cramps--also helps to control B/P. Of course, without blood tests, you have no way of knowing if your potassium is low.

I hope you can somehow make arrangements to get to Tampa soon. As Beky said, try the ALSA.
 
I am going to Tampa, if not ER.. NOW since I fell and smacked my head, I can't seem to stay awake. Bleeding is always a risk on blood thinners. Thanks all. Balance very bad now, not sure if it's because I fell so hard.
 
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