umsure

[unlegendary]

I'm still undiagnosed and the thought of ALS never crossed my mind until a few weeks ago when the doc suggested it might be the case and right about then was when my medical coverages expired so I have to redo that whole thing and that is a major job just to walk into the place.. They performed MRI's and have drained what feels like gallons of blood from me with still no definitive diagnosis.
Anyway..for several years my legs have been weakening more and more, little by little and I indeed get the twitching and spasms and pain and this year I began losing strength in my upper body as well bit by bit and like many, I have some days better than others and whenever I begin to think symptoms are finally gone they all return in spades. The strength in my legs never completely disappears, but some days it's damned tough to get around. Most days I can walk around the back yard, but that's about the limit without using my cane and if I go anywhere away from home i HAVE to take my cane and many times it's not enough. I have a big fear of getting stuck where nobody can help me or even getting stuck in the backyard and just baking out in the hot sun.. Luckily that hasn't happened yet. A little over a year ago I was lifting appliances up onto my truck barehanded. Today I all but had to drag a watermelon from the car to the back yard.
I'm a caregiver for an elderly woman who has severe arthritis in her knees so she's extremely limited in her own movement and I stay in a small building in her back yard so the thing I worry all the time about is the day when I can no longer move on my own and there will be nobody to care for her..or me for that matter. What we'll do I still don;t have a clue.
The grass in the front yard I can no longer cut and neither of us can pay someone to cut it so now we're really getting stuck and have no clue what to do anymore.
Still, all in all I try to not let my own physical limitations get to me. I worry, but I have yet to get depressed about it..
I just don't know where to go next with it all..

 

[joelc]

I am sorry to hear of the problems you are experiencing! It does sounds like ALS is a possibility but hope it is some treatable. Do you belong to a Church? Or know anyone who goes to one? There might be able to help with some chores.
My heart goes out to you!

 

[unlegendary]

I may consider attending an atheist group because I attend no churches because of my belief, but thanks..

 

[olly]

hi,and welcome to the forum.
you sound like such a caring person,it is so sad to know how difficult things are for you when your caring for someone else yet so ill yourself.

none of us are doctors and can only give advice from experience.
after so many years with symptoms it is highly unlikely to be als if you can still walk.
my honest opinion is that it sounds like it could be pls due to the fact it started in your legs and has worked upto your upper body but you can still walk a little.............that is me,classic pls.

you clearly have a progressive neurological illness but there are so many things it can be till everything is ruled out.
you need a good neoromuscular neuro or see a qualified mnd neuro.

do you know how your examinations went.........like reflexes ect?
what have they ruled out?

please dont burden yourself too much,its ok to ask for help.
are there any oraganisations or church helpers in your area who maybe able to help with the grass and other things?

we are always here to listen and support anytime you need it

 

[unlegendary]

Thanks.. I'm not completely convinced it's ALS either because I do still have quite a bit of upper body function. My legs are the biggest culprit though and they have been weakening over a long period, nearly 10 years. Up until about a year ago I was always able to function fine with some limitations.
Let me explain.. About ten years ago my son and I ran a business cleaning out houses after foreclosures and it was hard, dirty work climbing steps, carrying heavy stuff around, mainly trash, furniture, etc and i was fine with it then one day I just couldn't make it up and down steps anymore. I would make one or two trips then suddenly there was just no more strength left, but as long as there were no steps to climb I was OK. Because of reasons I wont discuss here I left my home town and moved 1000 miles away and meet the elderly woman I take care of now when my ex wife left with the rent money and moved into this little shed I've been in for 5 years now It got worse very slowly and I kept working and began working in the scrap metal business and did OK with that because there were no steps and then last year things REALLY changed and just walking was becoming really tough. Well, long story short is above so the details are a bit vague there, but it is tough no doubt.
I would love to find a job, but I'm so limited physically now plus I'm also very weary of leaving Margie (the old woman's name) alone for to long by herself. If she falls, and she has before she is stuck until I get there to help out.
So back to why I'm not to convinced it's ALS..I still get bursts of strength now and then. They're not huge bursts, but they're bursts non-the-less, but I usually pay for them by being completely wiped out shortly after I do whatever requires the burst. But I do have an appointment with a neurologist later this month (I think) to hopefully narrow things down a bit. I get a lot of memory gaps so everything has to go on a calendar on my computer or I forget them...I think I might have forgotten to enter my next appointments so i better check when I'm done if I remember.
I've lead a hard life and have taken a lot of blows to my head over the years. About 8 years ago or so I had my head kicked in and had several bones in my face broken and have some steel in my face holding me together and as a young man I used to think I could fight and it took me a few years to realize i just wasn't as good at it as I wanted to be and as a result I've had my lights put out more than once. I put a few out myself, but the score card never told a glowing story of me being a great fighter to which I'm actually grateful for now.. THAT probably kept me out of prison when I get down to it, but living near and with some of the people I have and the work I've done over the years I've also ingested a lot of nasty chemicals plus I also used to do just about any drug that came down the pipe.
None of that is anything to be proud of so don't think I'm bragging. It's not much to brag about being a stupid young man. It's just history.
Now In my 50s I'm paying for it all and the bill came due and I'm broke.. Sound familiar anyone?
So here it is years later and my legs do function, but not great and never much longer than a half hour tops before I have to sit. I'm afraid to go for a walk anywhere now because I'm scared i won't be able to get back and I've always been able to do that when I get upset or just feel like going for walks..
I'm rambling on here and probably should edit out 90% of this, but I don't feel like it, but bottom line is I think It's something else myself, but the doc still wants me to go to a neuro so until I get some kind of definitive diagnosis I'll be up in the air. It's been several years trying to get an answer.. I better check when my appointments are now..or I WILL forget them..
Thanks again.

 

[olly]

you have had a tough life thats for sure and we all have made mistakes in the past.
slow progression over 10yrs and the type of weakness you have does not sound like als,as i said it sounds more like pls or another neuromuscular illness.
its not good to push yourself,you do pay for it.
can you get any disability in the usa or do you need a diagnosed first?
if you can not work there should be financial help available,we do have info on ssd? somewhere on the forum.
hopefully you will get more answers at your next appointment.
please keep us informed about how you get on.

 

[unlegendary]

Thanks, but I doubt I qualify for ssi or d because I have some skeletons in my closet I'm not able to get rid of, but I'm still going to try.
I went today to renew my medical coverage and had a long, long walk to make to do it then it turned out I now have to make an appointment to do that so whatever appointments I had are now history and I'll have to go back to start and this only delays things another few months which just drives me nuts. my coverage was good for a year and in that year i was only able to manage to get three appointments because of the overload they have. It typically can take up to 3-4 months to get an appointment. Everything is way into the future. I've been trying for 4 years to get some type of diagnosis and it's always the same old run around..hurry up and wait or it's "we don't have time to see you this month so call back next month" and then get the same story after you wait a month to make the appointment. Once you get it you still wait another 3-4 months for the appointment time. I've spent a year finding nothing out except I hate this system.
I am close to just giving up and saying the hell with it all.. If it kills me it kills me. I wouldn't be the first one and sure won't be the last. What's the worse that can happen? I die? Big deal..Nobody will even notice except the old woman I take care of and if it weren't for her I would have taken a walk along the train tracks at night when the freights are busy.
Sorry for the negativity, but the system just seems to delight in depressing people.

 

[Moonmark]

Unlegendary-- unless you are a fugitive felon and there is an outstanding warrant out for your arrest-- you should be eligible for SSDI if you qualify. I do not believe you can be barred from this program for past offenses. I think if you were currently imprisoned, it would be a problem, but you indicated that you live in or nearby the elderly woman you are helping.

I don't know what your circumstances are exactly, but you should not let any past problems prevent you from seeking the help you need now.

Good luck--

Sandra

 

[unlegendary]

I just did some reading on PLS and many symptoms I don't usually have although some do come and go from time to time. I can usually speak just fine and don't usually have problems swallowing though that has been a problem once in a while. It's not a big problem.. Also i don't get much lower back pain. Most pain I do get is usually isolated to my legs and knees. One problem i do have though which drives me and everyone around me crazy is my inability to remember things short term and even some long term things. I have a horrible memory anymore and would utterly dread if I had to study again. I forget words often and end up searching and even looking online for simple words i used to know by heart.. Many are now gone for good. I forget simple songs I've known all my life and titles not to mention I misspell a lot now. Sometimes when I'm writing I have to spend a long time with spell check and have to rewrite a lot of grammar errors. If I was ever good at any subject in school it was English. I aced that every time, but forget mathematics. I'm lucky to count to 5 sometimes playing poker.
Well, coffee is ready.. If Margie hadn't reminded me it would sit and burn so time to go serve her morning coffee to her.

 

[olly]

unlegendary,you have cognitive dysfunction.
everything you said about memory ect is exactly like me,i too was excellent at english but have problems with reading and spelling now.
my cognitive problems are part due to the meds i have been on for years plus some ftd as well i think.

i only have odd problems with swallowing/choking and slurred speech when over tired.
lower back pain can be a symptom but not always.

what sandra said is probably right,i can not see how you can not claim ssdi.
do you have a gp? they should be able to help you more with appointments ect. if not get one.
if you need any info or help we can do that,try and figure out some solutions .

we all have felt depair and giving up,life is tough even without a progressive disease.
at least you have margie to keep you going.
you are a good man,people/we do care and you deserve better than what you are going through right now.
hang in there.

 

[unlegendary]

Well, at the risk of letting way to much out here I was arrested several years ago on drug charges and then left town and have stayed away. They know where I'm at and haven't made a move to come get me and I've also gotten an ID made so there is no way they can't know where I'm at and here it is nearly 8 years later. Personally I think they're hoping I pop up in town while driving illegally in the dope section of town and that's not happening because, well, I've remained clean the whole time. I still take a small amount of methadone I get at a clinic every day which is no fun, but it keeps me clean and helps with leg pain, but if I go without which I certainly would if arrested the pain is intense and I can barely move so..I have utterly zero desire to turn myself in so I can go die in a jail. If I had murdered someone maybe, but I've never been violent since my teens and have never been a thief so I just don't see what I did as being worth the death penalty. i know..That sounds a big dramatic, but in withdraw in a jail I don't think I would last long. I certainly couldn't defend myself from the thugs. Please don't say there are no thugs in jails.. I know better. :-/
Yes, it's a felony charge if they come get me and even if they don't the soc security system could turn me down and they would know exactly where i live then..not that I have to many doubts that they're wondering as is.
Well, that's part of what i danced around it over and as a result I'm scared to get nailed and end up leaving Margie alone and me unable to do much except lay in a bunk puking on myself. At least the way it is now I'm able to care for her and myself for now. Where I'll be down the road is anyones guess, but for now it works..Sort of.

On to a completely different theme.. A little while ago my eyes went dark as if I might pass out, but I wasn't really dizzy.. just my eyes began seeing nothing but darkness staring right at my monitor. I laid down a while and I'm fine now, but it scared me.. The last thing I need is to lose my eye sight. I already lose almost all my balance when I try to walk at night or if I close my eyes when walking. Sometimes when I'm tired my eyes will close involuntarily too which makes me lose balance big time.. I guess I'm a bit to visual for my own good.

 

[Marjorie R. Wilcox]

When I read your post I immediately thought of telling you to call a church and ask for help keeping the lawn mowed. I also read your saying that you are an atheist. That doesn't matter to those who would love to mow your lawn. You wouldn't have to talk over your beliefs to get the lawn done. Someone would just come by and do it and you could give them a wave of the hand and a smile for appreciation. You could muster that, right?.... Please reach out to others and let your fellow man help. You need a "perk" to improve life in general. It's out there, Friend.

 

[lydia]

Hi,

I have to say I am really moved by your story. First, your physical symptoms sound so much like mine except that mine have not been going on for ten years. The passage of time does suggest PLS (if that is any consolation at this point in your progression). Second, my brother (as well as male cousins) also had trouble with the law when young and stupid that still haunt them no matter how clean and respectably they live now, twenty plus years later. We still joke in our family that the boys' rite of passage is to become a fugitive while for the girls it is to aid and abet. Well we have to laugh because the only alternative is to cry! Seriously, I can empathize with much of what you wrote in light of my brother's on-going struggle to redeem himself. Do you have family?

Lydia

 

[olly]

if they have known were you live for the past few years or really wanted to put you in jail,really i think they would have done so by now so dont worry about that.
even in prison they have to give you perscription drugs including methadone if you need them plus any medical help.
please dont worry yourself about these things,besides your too ill to throw in jail.

concentrate on getting a good gp and neuro,also benefits.
if you need any help with these we can find it for you.

(((hugs))) to you and margie

 

[charlottecorday]

I understand your fears about withdrawing from a substance like Methadone in jail. It would be lethal for someone with your health problems and age.SSDI takes a minimum of 6 months and two docs saying you are disabled to receive, and then you don't receive Medicare benefits for two years.Medicaid, Medicare, SSDI are pretty much out of the question for you with the fake ID gig.

You will be blessed for taking care of Margie.You need radical help.Last ditch effort. When the time comes. I bet they are onto you already, but know of your good deed and are leaving you be. Besides that, prisons are overcrowded.

Go to the Salvation Army on Harry Hines.Clean yourself up. Lose the fake ID's. You had a blackout(you have head injuries to correlate all this,it seems).You don't know who you are, where you came from, you found yourself amongst strangers. They have a drug treatment center, food, and shelter. If you are in pain, they will get you to Parkland Hospital across the street.Parkland is a public general hospital(also where JFK died), and tell them the same thing.You are now an amnesiac. Good Luck. All your health problems will be addressed by resident docs and MD specialists.