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  • Newly diagnosed and lost

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    Old 08-09-2008, 03:12 PM   #1
    HeatherJC1
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    Newly diagnosed and lost

    I am a single female, age 27, just diagnosed with relapsing-remitting MS. I am recently unemployed and my symptoms are currently keeping me from further employment. I have severe foot/leg pain, visual problems, balance, coordination, and cognitive impairment. I have not started any treatments yet other than the IV steroids which have done nothing but cause unpleasant side effects.

    I was wondering if anyone who is, or has ever been in a similar situation, has been able to file for some sort of assistance such as disability until the symptoms are under control enough to work. Is there even a chance of being approved for something? I have no insurance and since I am not currently employed, have limited funds available. This is all new to me and I really have no one to turn to right now. I appreciate any help or advice given.

     
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    Old 08-09-2008, 04:34 PM   #2
    Bearygood
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    Re: Newly diagnosed and lost

    Hi, Heather, and welcome. I'm sorry to hear about your dx and especially sorry to hear about how you're feeling. I hope that others will be able to help you more than I can about what options may be open to you. I can tell you that the Multiple Sclerosis Association of America offers one free MRI a year for qualifying individuals. Also, if you're going to be taking one of the MS drugs, that many of the companies do offer financial assistance. If you go that route, another option to explore MIGHT be to participate in a clinical trial. Everything is covered but there is no guarantee you're getting the real drug and not placebo.

    I hope that some of your questions can be answered and that you find being here helpful.
    __________________
    Dxed RRMS April '07
    Not on DMDs

     
    Old 08-09-2008, 05:00 PM   #3
    april1848
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    Re: Newly diagnosed and lost

    Welcome Heather! I'm sorry you're going through all of this. Are you living alone? I hope you have some supportive people around you. If not, there are lots of supportive people here.

    There are many here who have been approved for disability, med assistance, Medicaid and Medicare, etc. I agree with Beary that you should call the various MS organizations, and you may want to check in with your county's job and family office to see about getting Medicaid, or other kinds of help.

    There is a chance that you'll be approved for something. There is also the possibility that your symptoms will improve, when you go into Remission. It's really hard to tell with MS! The Social Security Administration is changing it's criteria on MS, to make it a little easier to get approved for Disability--I believe that those changes go into place in the fall. You can certainly call your county's office and get a case worker to help you with the process. There are a lot of great services out there, but it can be confusing and overwhelming, so get help if you can.

    I was 28 when I was dx last September. I'm sure there are a million fears and questions racing in your mind right now, and I promise it will get easier. Try and take some time to digest all of this, and PLEASE remember that you are not alone! Remember also that having MS does not mean that your life is over! Come here and ask as many questions as you need to, and to get things off your chest. This place saved me.

    I'm sure someone who has been in your situation will pipe in here. I'm fortunate to still be working, although I did take a different job. I hope you like our cyber family!
    __________________
    April
    dx 9/07
    Avonex started 11/07,
    Stopped 4/10 due to no insurance.

     
    Old 08-09-2008, 05:03 PM   #4
    Nenu
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    Re: Newly diagnosed and lost

    Welcome to the family! Sorry to hear about your diagnosis and situation, but please know that you are far from alone. You'll find a lot of support here!

    As for the steroids, has it been long since they were administered? I found it took a while after receiving steroid treatment to have relief from my symptoms of MS.
    __________________
    RRMS Dx 03/08

     
    Old 08-09-2008, 06:04 PM   #5
    MSJayhawk
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    Re: Newly diagnosed and lost

    Quote:
    Originally Posted by HeatherJC1 View Post
    I was wondering if anyone who is, or has ever been in a similar situation, has been able to file for some sort of assistance such as disability until the symptoms are under control enough to work. Is there even a chance of being approved for something? I have no insurance and since I am not currently employed, have limited funds available. This is all new to me and I really have no one to turn to right now. I appreciate any help or advice given.
    Check with your local state rehabilitation agency. They will be able to assist you the quickest. If you are going to get better, then you need not move forward for SSDI.

    Here in Kansas the rehab agency will fund your living expenses and university education for rehab. I do not know your needs, but someone at the state agency can assist you best.

     
    Old 08-09-2008, 06:48 PM   #6
    MSNik
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    Re: Newly diagnosed and lost

    Hi Heather. I just wanted to add my welcome and say Im sorry that you are having to go thru this. Almost all of us have been in your shoes, as far as newly diagnosed in the past few years. Its an awful time, very scary and overwhelming and the unknown can cause HUGE anxiety. When I was newly diagnosed, this board literally saved my life- it gave me people to vent to, a place to ask questions and compare info, and I made friends here, who I honestly cannot live without! 2 years post dx, and Im still here almost every day.

    I do agree that right now, especially after being recently diagnosed, your sytmoms are probably raging, and you wil probably feel ALOT better when they go into remitting mode...also, the summer is the worst time for us MSers- overall, as soon as the heat and humidity start to die down, we start to feel more like ourselves. How long ago did you do the steroids? Just so you know, they can stay in your body a month or longer, and they have been known to help even weeks after being administered.

    Has your Neuro spoken to you about any MS drugs? If so, your probably completely overwhelemed by them, as well. I realize you do not have insurance, and wanted to mention that Rebif will help you for a full year with that drug, should you want to consider it. Its free for a year, just for calling them. I started on it right after I was dx and although the first few months are alittle difficult, with flu like symtoms the night you administer, I quickly got used to the drug and now, its like brushing my teeth. I just do it a few times a week and thats that. It has helped me to stop relapsing, and I havent had a single relapse in the past 18 months.

    As far as disability goes; thats tough. As April said, they are working on making it easier for MS patients, however you really have to be disabled and unable to perform any kind of work to be qualified. You can certainly talk to your SS office, and call your local MS chapter to get more help with that...but if there is any kind of work you can do, I would consider doing it for now- while you wait and see if you are going to improve....getting insurance with MS might be difficult, as you now have a preexisting condition..so you do want to look into that as well - soon.

    There are so many people here who care and understand what you are going thru, if you take nothing else from this, remember you are NOT alone and there is always someone here to help you. Please shout out whenever you need us and best of everything to you..
    Nikki
    __________________
    RRMS- dx 05

     
    Old 08-10-2008, 03:24 AM   #7
    glamour girl
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    Re: Newly diagnosed and lost

    Welcome Heather, I do wish you are more hopeful after reading all these posts. you've got great advice here. As for helping with SS. I come from a different country than yours. Our health system is SO different to yours.
    The very 1st thing i did do, was call and register with the MS Society. That will cost you nothing. I got advice and help with filling out forms. Let me tell you Social Security will give you so many forms. That alone was overwhelming.
    I had my husband to also support me. Don't know if you do, If not Maybe a family member or a friend can also help you. Also here SS offered me rent assistant when i needed it. Unemployment benefits and phone allowance too. Like i said, things are different here in Australia. I hope you can benefit in some way.
    As for meds. Do your research. There are a few to choose from. Remember help is around. Glad you found us. Once again welcome.

     
    Old 08-10-2008, 11:49 AM   #8
    rickss
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    Thumbs up Re: Newly diagnosed and lost

    Hi Heather
    I am also new to this. Everybody has been extremely concerned and helpful. You came to the right place.My two cents, It is over whelming at first but like anything else you will be able to adapt.I am 41 and dx 4 years ago and have found a positive outlook will help alot.
    The way I see it you can be depressed and have issues to deal with or happy and have issues, either way you have issues so be HAPPY.Take it or leave it but it works for me.
    Have you applied for unemployment and some local churches or other organization may be able to help. Good luck and we all look forward to talking again.
    Rick

     
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