Hello everyone! I am new here.

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Hello everyone! I am new here.

Postby Uprightnbreathin » Fri Oct 12, 2007 12:52 am

Hello everyone, I have been Dx'd with MS in Feb. '07. I have had two relapses since. The two relapses were like hitting brick walls and now I am working five hours a week and reaping those rewards(LOL) (awaiting SS disability). I know that if I ever see a light at the end of the tunnel again, I WILL RUN!! Probabaly another damm train!
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Postby LisaBee » Fri Oct 12, 2007 5:43 am

Well, you've joined one of those clubs no one wants to join, but welcome.

There's been another new poster in the last couple of days asking about insurance, etc., I think his wife was recently diagnosed, and you've got ongoing experience with the Social Security side. You may want to look his post up.

I know of a person in his 50s that had a stroke and hasn't been able to work and it took him nearly two years before he started getting SS disability. I personally have been lucky so far and haven't had to do it yet, but there is a high probability it is looming in my near future. It is the situation for a lot of posters here, either you are swimming the system right now, or have high probability of having to jump in. .....How does the SS disability system work?

Lisa
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Postby LisaBee » Fri Oct 12, 2007 5:51 am

FYI - the poster is RFor1 - under general discussion he posted under header something like "insurance and employment issues"
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Postby AllyB » Fri Oct 12, 2007 7:20 am

Hey there

Good to meet you, sorry about the circumstances - it stinks, yeah?

I have very recently had to give up work after 25 years, and although you know you need to, it still sucks big time when crunch time comes.

I think it is even worse in the States because I believe that your disability system is very difficult to navigate successfully - I was fortunate in that although there is no government assistance where I live, I had good private insurance which paid out relatively easily, so that was one worry off my mind. I remember googling disability when I was considering it (was forced to), and you guys have a whole bunch of documents over there which tell you how it works - I even seem to remember they described the ms symptoms that would be considered - I will try to find it over the weekend and post it for you.

You are right - that light at the end of the tunnel is probably a train, you are fortunate indeed if you can still run fast enough! Are you on any treatment? Have you stabilised?
Hope you take care of yourself any way you can, and find this site of some help.

Regards
Al
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Postby TwistedHelix » Fri Oct 12, 2007 8:27 am

Hello Upright,
Glad to have you along, though I'm sorry you find yourself here.
Although I'm sure our social security systems are very different, bureaucracy is a worldwide epidemic so I bet you've got loads of forms to fill in. One of the problems I encountered was that you never quite seem to fit in with their little pigeonholes: the question might be a simple "can you dress yourself, yes or no?", but the answer is more like, " weeell… I can ... But some days it's really hard and I can't wear things with buttons... And sometimes it takes me ages... And I can't get socks on very easily", so you tick " yes" because you can still just about manage to do it, and your application is denied.
It's really hard to keep ticking the boxes that say" no, I'm disabled" when you really thought you'd never be applying for anything like this, but I'm afraid that, here in the UK at least, your score will be totted up in an anonymous office somewhere and your financial security decided on that basis. I always felt that the section at the end where you can give a more detailed description of your disability is rarely taken into consideration.
I don't mean to put anyone off, and certainly don't encourage anyone to tell lies, just to say that when you come to a "can you" question and the answer is " yes, but", it's probably better to say " no ".

Keep dodging the trains, and no more running with scissors,
Dom
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Postby Uprightnbreathin » Sat Oct 13, 2007 1:23 am

I would like to thank everyone for replying to my introduction. I hope I am replying corectly.... I need to say that every step of the way has been a challenge for sure!

LisaBee.. The Social Security system works (from what I have gathered) by the amount you have paid in in the previous 15 years. This is out of the taxed part of our earnings... such as federal, state, and social security. The Social Security looks at the previous 15 years (prior to application). They take that amount and come up with your monthly amount you are elegible for. You are still able to work and make a certain amount of money also (I am not sure what that is yet... I know I fall well below that amount).

AlleyB.. I can only run safely if I plan for the impending face plant...lol. My brain will think of doing it... my legs will just get the delayed message once it is too late. I have been on Rebif since the Dx in Feb. of this year along with other meds... such as Neurontin and Baclofen. I have had one relapse at the time I was positive M.S. (confirmed Dx) and once again since the Dx. (about three months after I started Rebif). I was hit hard with MS and am really bad now... compared to ten months prior to my Dx. I told my Dr. before my Dx that if another ten months goes by (at the rate of progression) that I'd be in a wheelchair. I had no idea what was happening to me! I have been about the same since my last relapse. I have these aweful muscle cramps in my lower legs that have been 24/7 now for over 1 1/2 years. No relief from that ever!!! I also have depression... imagine that... maybe that has something to do with my new hobby of walking into walls!! Back to the stabilization... I have been for the past five months. I am sure this site will help as I knew nothing of this disease up until Feb. of this year.

Dom.... I have an advocate for the Social Security system here in the U.S. They get 25% of the amount awarded. I guess alot of people use them here. I figured I had better as I would be good at writing a check for a bill, place it in the envelope, put it in my car to mail off at the post office.... all fine and dandy... till I get the late charge... UGH... then find it in my car unmailed!!! I can almost feel the blood vessels in my head poping...lol.

Social Security has recently sent me to one of their Dr's. Stress is a good word for that visit... I was figuring that it would be a neurologist and he would say I didn't have MS.... to let S.S. off the hook. I was supprised when I found out it was a Dr. of psychology! he had me for four hours and I had to play with blocks and other humiliating stuff! I have not had to play with blocks since I was four. I still don't know why I had to. Memory was one big thing they tested me on. Results not back yet.

Nice to meet everyone! .... Sad to see you here!!!
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Postby AllyB » Sat Oct 13, 2007 7:41 am

Hey there

This disease is a real nasty one and I am so sorry it has hit you so bad, so quick. It is so tough when our bodies don't respond to our brains the way they should.

My ms is mostly cervical (got a few lesions in the brain, but not the Swiss cheese of my spinal cord), so I also get terrible muscle cramps, which my neuro recently diagnosed as spasms due to spasticity (he had previously ignored my complaints), something about hyper-reflexibility due to spinal cord damage. I have found that the baclophen, amitriptyline and neurontin together really help - they don't entirley get rid of the pain, but it is a lot easier to manage. Maybe ask to add a low dose of amitrityline to your meds for a short time to see if it helps, or try a low dose of valium as that can also help.

This has all been fairly recent for you - you may find that you get some recovery of function still (maybe even a lot, who knows), now that you seem stable - it can take a long time - I have heard stories of people getting some function back again a couple of years after a relapse as damage to the nervous system is slow to repair.

The depression is also no surprise - goes both with the disease and finding yourself physically limited and with an uncertain furure - I am on cipralex for that too! I rattle like a box of smarties because of all the pills i take, and that is without the supplements - oh, and Avonex, ibuprofen etc.

I am so glad that you have someone to assist with your disability process, 25% seems a lot, though! I was sent to a neuro-psych by my neuro in preparation for the disability application - I had to draw pictures and fiddle with a peg board. Don't read the report, it will only depress you even more - never realised that my memory and processing of information was that bad! Seriously, mine recommended a program of cognitive retraining, but since I don't know what that involves and it sounds rather Pavlovian, I haven't done it yet...

All in all, you are really having a bad time and having to come to terms with a lot of changes really fast - I hope you do well on the Rebif and that your disability application goes smoothly. I know that you will find some good info on this site - the folks I have met here are incredibly knowledgable and empathetic.

All the best
Al
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the club that no one wants to join...

Postby LAnBfflo » Tue Oct 16, 2007 9:20 pm

Yes, I too, have been navigating the wonderful bureaucracy that is the SSA. I was sent to one of their doctors, and my claim was denied. Afterward, I found out I could have refused to go. Oh well. I filed an appeal with the help of an attorney. We are still waiting for a hearing date 19 months later. I am in NY state, and from what I hear, there are are only 3 judges for disability appeals in the whole state. My attorney said the appeal runs about 2 years. I should be hearing very soon.
It was a horrible feeling being at work and realizing I couldn't do the job. What's worse, I was doing a job that I had previously thought of as a "trained seal" job. Here I sat, looking at the keyboard, customer on the phone, and I was panicking, because I couldn't figure out which number was the "7" to enter the style number.
Aaah, the good old days.
Now I just forget to make chocolate milk for my kids, and they remind me right away.
Keep on keepin' on. Ya gotta!!
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Postby TwistedHelix » Wed Oct 17, 2007 6:09 am

In the UK we have an organization called Welfare Rights: they are absolutely brilliant because their sole aim in life is to get you the benefits you're entitled to, and they charge nothing. There may be something similar in the States, which might be worth looking into – that 25% charge seems outrageous ! I'm not quite sure what to think about the psychologist you had to see: at first I suspected they might be trying to get out of payments by saying it was all in your mind, or that you would still be capable of non physical work, but then they could simply have been measuring any cognitive decline.
LAnBfflo, that feeling of being useless at what should be a simple job is the most frustrating and demoralising feeling in the world! While I was still working, my company created a new job especially for me, which was exceptionally good of them. But I have to say it was a completely pointless position which involved writing and filing bits of paper in order to keep track of where other bits of paper had gone within the buildings. I felt completely unproductive, but now I realise there are entire departments full of such jobs within the social services.
Even though you had the option of refusing to see that doctor, I'm glad you didn't because I'd bet that would have been a black mark against any claim you might have made.
My family has a difficult medical history, and I have to say that I'm sick and tired of battling against tedious bureaucrats and frankly useless officials to get the simplest thing done
Dom
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it's so grand...

Postby LAnBfflo » Wed Oct 17, 2007 8:04 am

Well, the psychiatrist I saw was before I was diagnosed with MS. Since regular MD's couldn't find anything, I surmised it was in my head...psychosomatic due to stress, or some underlying thing. Even the psychiatrist told me there was nothing wrong. I'm thinking, "OK, no physical cause, no mental cause, maybe I'm in some parallel universe or something...
Yea, though, that working while feeling like an idiot was truly awful. It's not a feeling I'd wish on anyone. And the first time it happened, I was really scared. I didn't realize it was the MS having more fun eating more Myelin.
Thanks everyone for being here. I have a fantastic husband, family and friends, but none of them exactly get it.
Take care!
-LA
PS-The way it works is if the SSA (Social Security Administration) does indeed reverse their decision, you get a lump sum payment equal to 12 months of payments (up to 12 months-could be less or more). Then you receive regular payments monthly. The 25% is off of the top of your initial lump sum payment, and it caps at $5500 (US).
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