no way to walk it off

Ok used to be if i felt frustrated about anything i would go for a nice long brisk walk....
Just can't walk long or brisk any more.
I know exactly why im hunched over i am compensating with my upper body to keep my lower part of my body from falling over. one of my friends tried it out today by straightening my posture, i tried to take a step and almost fell over. if she had not been holding onto me i would have toppled over.
So back to being hunched over.
I don't know whats got me i just know it is getting worse. I have declined a good bit just in a week now.
Also one of my room mates gave me her bottom bunk.
I nearly fell a few times on that ladder.
So thats a relief.
My arms have to trade off for the cell phone with the left still being stronger.
My hands just recently started feeling sore from gripping things. Been dropping things for a bit now. Words dont come out right.
Basicaly i know im in limbo land and have to deal with it.
I just dont know which neuro disorders get worse.
So i guess call me a wambulance. lol!

this is just my opinion, i live in indiana and i am familiar with the medicaid rules here and in illinois. I would take myself to the emergency room of a hospital,do not tell them you are homeless, they might just dismiss you as a crazy. Lie a little bit, exaggerate your symptoms, tell them you keep falling down. I do not know if any assistance has come through for you yet, but hospitals have the ability to make an application for medical assistance if you are hospitilized, they did this for a friend of mine in indiana. They cannot turn you away if you are really ill with a nuerological disorder and of course they want to be paid. So if you are getting worse and worse that is my suggestion to you. The system works but if you apply for medicaid you have to have all the papers they request otherwise you will be denied, good luck, margaret

Thanks. By the end of next week i should have an answer on the countys low income health. they wont give me medi-cal (california medicaide) unless i have a minor child, pregnant, or federal govt says im disabled.
But i should hear from low income health soon.

I went to the er twice so far both times they urge me to follow up with neurology. They say they cant get me a diagnosis there.
And yes its a sad fact that many think homeless= stupid or mentaly ill.
Which is far from true.

But im down right disgusted over what is doing this too my body.
Going from independent to where even the simplest of tasks are more and more like a chore.

But im sure there are people with far worse problems than mine. So on the other hand it makes me feel guilty for complaining.
Thanks for your very thoughtful and helpful reply.

HI

I'm not in Cali but if it's anything like FL there are free clinics out there. We have one called Shepards Hope. Here, for instance, if there is an issue that is beyond their abilities they have set arrangements with various clinics and hospitals for needed testing.

I didn't read your entire story--just this post--but gathered from the replies that you have no insurance and no help.

Check online for "Free clinics in X California" and see what's available. After that, if that doesn't help, contact the MDA and see if they can help. They will provide a diagnostic exam if ALS or another MND is expected and there is no ability to pay. It will help if there is perhaps something from ANY GP that says you need further evaluation.

As for the walking--if you don't have a walker, get one. It beats falling. Most larger cities have churches and things like a walker should be available if you don't have one.

Balance issues suck. My first walker was a cheap one from a thrift store--think it was $5.00.

As for ERs--they are pretty useless I'm afraid--unless things are so bad you're literally in imminent danger of serious illness. They just have to assure you're not going to keel over, unfortunately. They just won't do the involved testing it takes for neuro issues--but there are a lot of sliding scale places in most states.

I will say that if you fall--stay DOWN. If it's apparent that whatever is happening is causing falls the hospital is more likely to admit you and do some testing. I found that out myself. I collapsed in the street--even with no insurance, the hospital admitted me.

Good luck to you

Edited after reading a few of your other posts: Have they done an MRI to be sure you haven't had some sort of stroke? A lot of your issues don't sound like ALS...but if you could get a copy of the notes from the doctor you saw saying you needed a neuro perhaps the MDA could help?

An MRI would go a long way in telling if perhaps you do have MS--ALS doesn't cause the temp issues and many of the other things you're dealing with.

Doesn't the shelter you go to have any connections to get you in to see someone that can do some basic testing for you? I hate to think of your not having any help. At least I have my daughter.

I had no insurance for a long, long time. I ended up finally on disability and got medicare. I don't know if you have work credits--but perhaps that's something to look into?

It couldn't hurt to call the MS society to see if they have any suggestions-- but if things seem to come and go--have they ruled out myesthenia gravis? Do you get worse after exertion?

If your speech has been effected I'm surprised they haven't done an MRI to be honest. I hope you can get the help you need soon!

I went to the mobil medic downtown they are wanting me to see a neuro specialist asap. Im just waiting on cali's medicade to deny me so i can get what is called low income health through the county of san diego. So should not be too much longer. I wake up thinking i will be fine today then i get up and its bs im getting worse. Its a wsiting game right now. I do have a loaner walker for now.
Now my arms have gotten weaker and i depend more on others to open doors that i had no trouble with 2 weeks ago.
Holding my cell makes my muscles hurt have to switch off often.
the er ran a ct scan and said no stroke. Right now im just waiting. Things come out my mouth all wrong and my voice has tremors. But thanks for your advice.

Can i cry now?

I think i may have what one of my dads sisters died from... multiple system atrophy. I guess i coild be prone to it. Oh the sensetivity was a side affect of doxycycline from direct sun exposure.

Yeah i am applied i have work crefits since i was 15

Hope you get an answer soon Ysabel. Sure hope it's not what your aunt had. Can you contact a social services organization to advocate on your behalf in order to speed up your healthcare application?

hi ysabel.
My heart goes out to you after reading your posts,i can not imagine how difficult your situation is.
Unfortunatly being in the uk i can not help,your medical and benefit system seems more complicated than it does here.
It makes me so mad that you are the wealthiest country yet your medical /benefit system sucks.........i mean,you should have been seen as a matter of urgency before now.....discusting!
MSA would certainly show up on a mri scan but sadly the outcome and life expectancy is like that of als.....as far as i know msa is not hereditory.
What sensetivity do you have in relation to sunlight?
Sorry i can not be of more help but i will keep you in my thoughts and prayers........praying you get help asap.

We found out that the sensetivity was caused by doxycyline an antibiotic which was for accute bronchitis.
yesterday my nurse advocated for me and in about two weeks or less i will be going to neurology.
At ucsd san diego.

As for the health care in the usa well the way many seem to see it is spend money on killing and disabling human beings via war is a great idea. But preventing treating and posibly healing human beings not a good idea.
Both spend tax dollars which i have contributed to. I would prefer they go to health care.

your balance problem could be because you dont know were your legs are....hence you hunch over to see the ground as you walk.....stand straight and shut your eyes, i bet your all over the shop.....johnny....

I hate to jump to conclusions and hate being negative. So on a daily basis i fight negativity. I get angry with my decline and then try to think positive.
I am going to neurology in 2 weeks or less at the als clinic so they can run test.
Its at ucsd huge clinic here.
My voice is getting worse people tend to think im crying or about to cry.
my words slur and come out all wrong.

But thank god yesterday on my 46th birthday my youngest sister rented me a studio in downtown san diego ca. Near where my care is.
Plus she wants to send me a computer because she knows im struggling on my phone with this touch screen back spacing all the time.
My right arm is by far worse off than my let. And has gotten worse even in the last week.

johnnyliverpool1 said:

your balance problem could be because you dont know were your legs are....hence you hunch over to see the ground as you walk.....stand straight and shut your eyes, i bet your all over the shop.....johnny....

Click to expand...

Johny i dont understand? Why would i not know where my legs are?

exactly what i said...but its actually quite a subtle thing....my neuro told me after doing some balance tests and i was very green about neuro stuff 6 yrs ago,,,,not much better now.....he did explain to me but it went over my head at the time.....its a sensory thing...i think...walking in the dark is dodgy for instance...erm..you gotta look down to see were to put your legs...you dont know your doing it...as i said stand up straight and shut your eyes ...if no problems then ignore what i said..i hope those on here with more knowledge will explain what i am saying......johnny