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Thread: In a bind, in need of advise...

  1. #1

    Default In a bind, in need of advise...

    Hey all,
    New here, and am looking for some advise.

    Im 23, married, with a very active 14-month-old. When I was 18, I broke my clavicle, and hurt my back and spine. I feel as if i never recovered from it. Within the last 5 or so years since then, I have had some abnormal symptoms.... Extreme fatigue, buzzing sensations, tingling in extremities, gait disturbances, weird vibrations in my head and neck, freqent and absolutely annoying twitching, feelings of being rained on, spasticity, and the list just goes on and on. All of these are only getting worse and more frequent.
    I have done enough research and am quite positive I have MS. Obviously, I am not a doctor, but I've narrowed it down to a few neurological conditions, with MS being the most likely.
    At this time I do not have any sort of health insurance. We cannot afford it right now. Long story short, my son was born 5 weeks early and we have racked up quite an extensive amount of medical bills. $370 a month to cover the 3 of us is rather CRAZY!
    So, here is my problem... I have been dealing with some chronic, waxing & waning, mystery illness for a long time. Ive seen numerous doctors, but none have really put 2 and 2 together yet. Im sure its MS, but I dont have the money it takes to confirm it. Ive checked out several insurance plans, none of which cover the specialty medications that are used for managment of MS. So, in the long run, is it really worth getting insurance before diagnosis, or should I just go get a Dx without insurance and hope to get Medicaid? The cost of the insurance will of course rise after a Dx, but without insurance I might be stuck paying full price for everything.
    How did you all make it through the Dx process financially? What worked for you? I cant make it any longer without a Dx if I hope to keep my sanity.
    Should I bite the bullet and just get insurance? Is there any financial hope after a Dx, because it seems that MS is a sinking pithole for ones financial future. Sometimes I wonder if I would be better off just ignoring it all and not getting a Dx. Im so lost.
    Any bit of advice I could get would be lovely.

    Thanks in advance!
    -Lost lady

  2. #2
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    First welcome to BT.

    I would if there is anyway possible get insurance BEFORE a Dx. Especially life 'cause they aint gonna insure you after. I would check to see if you are close to a chapter of NMS society. You didn't say where you are located but most places have a location close by.

    There are a number of other things that need to be ruled out first. And noting your accident when you were 18 makes me wonder if you might have a pinched nerve in your neck. I broke my neck a number of years before MS and it felt very similar to what you are experiencing. There isn't any good way to get a Dx without a number of tests. A MRI being one of them. I really doubt that any doc is going to treat you for MS without doing some of these tests. And even then is is going to be a wait and see thing very, VERY few people get a Dx at the get go. I am one of those few so it does happen. But most folks play the waiting game.

    Please keep us posted there are a lot of great people and tons of knowledge here on this board. Please feel free to introduce yourself on the Chit-chat thread. We started it to whine, joke and most importantly to remind ourselves that MS is not the reason for living but its just one of those things that happen.

    If you need to know anything just ask me my wife says I am a know it all.

  3. #3

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    Thanks Gary!
    I live in Montana, so none close. I think the closest one is 4 hours drive from me. Would be an option to check out though.

    After my broken clavicle, I was put in physical therapy, and I have been going to the chiropractor since then. I have also had many x-rays. Cant imagine that a pinched nerve is my problem, although I wish it were.

    I have had many episodes, at least 2 a year for several years. Usually they will pick up recovering lesions, or old lesions in MRIs. Most of those that do not get a quick Dx are those that have had few clinical eposodes, or have few symptoms.

    So, you think my best bet is to get insurance before I go in? This whole Obamacare thing is really just making it more difficult, but is kind of a blessing in some ways.

  4. #4
    Distinguished Community Member SalpalSally's Avatar
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    Welcome Aimee to Braintalk. It is not unusual for an accident/tramatic experience,
    to trigger the onset of MS and it's symptoms. What causes MS, is still to be deter-
    mined, but there are many triggers that seem to wake it up. Usually involving some
    kind of stress - (mental or physical).

    Have you been examined by a MS specialist Neurologist?

    Please, take a deep breath and let us know how it goes for you. We Understand.
    Love, Sally


    "The best way out is always through". Robert Frost







  5. #5

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    Thanks Sally!
    No, I have yet to see a neurologist. We only have a few where I live, and they won't accept me until I have insurance, which I cannot afford right now. Kind of a vicious circle of inability to get a Dx.

    I was thinking that maybe ones blood-brain barrier may be injured in an accident such as mine, which may lead to conditions such as MS.

    Sadly, we do not have any MS specialists where I live either. Strange, considering that climates such as that in Montana hold a higher insidence of MS.

  6. #6
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    Can you call the National MS society (rather than undergoing a 4 hour trip!) They do have people available who can walk you through the process to apply for health insurance under the Affordable Care Act (known as Obamacare). It sounds like you and your family will be eligible for subsidies and credits, making insurance much more affordable than you might think. And the fact that you have some health issues already (which in insurance-speak is known as pre-existing conditions) won't matter if you get a policy through the ACA. Getting on Medicaid is certainly another option. If you can't call the National MS Society, check your state government pages. Many states have people available who can help with the ACA applications as well. Go to your states website and look around.

    Yes, getting insurance first is probably the best way to go. I'm sorry you have to deal with this at your young age!
    ...I am not a doctor nor medical professional, and don't pretend to be one, here... :o

  7. #7
    Distinguished Community Member agate's Avatar
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    Hi AimeeM, and WELCOME!

    I agree that it would be best to have insurance sooner rather than later, but you don't want to let a lot of time pass before finding out what is going on with you. If it happens to be MS, there are drugs to curb the progression of the disease, and the current idea is that the sooner you can get on one of the drugs, the more effective it will be.

    You'll probably end up being referred to a neurologist. This might mean traveling a distance but with luck you won't have to see the neuro very often.

    You asked how the diagnosis process went for others. Things have changed considerably since I was diagnosed (1980), and I think Obamacare is going to have some new rules about pre-existing conditions that should make it easier to get insured even if you've already been diagnosed with a chronic problem.

    I was uninsured and paid for all my medical expenses connected with the diagnosis but I had sold the house I'd been living in and had the proceeds to help with those costs. I'd sold the house because I was getting too incapacitated to take care of it any more, and so it was lucky for me that I had already turned the house into cash by the time it came to light that my problems were neurological and needed to be investigated.

    The MS Association of America (MSAA) has a program offering free diagnostic MRIs for those who qualify. You might want to look into it:

    http://www.mymsaa.org/msaa-help/mri-diagnostic-fund

    You'll probably need a doctor's prescription for the MRI, and the doctor may need to be a neurologist. But the MRI is the one test all doctors who suspect MS would order. There would be other tests as well as the doctor's office exam(s).

    Hope you can take it easy and rest in spite of your busy schedule. It's hard for moms not to overdo. I hope you'll get some answers to your health problems soon.






    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  8. #8
    Distinguished Community Member Cherie's Avatar
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    aimee,
    You have gotten some good advice here: Call the NMSS and see what services they can provide to help you get a diagnosis. Get Life insurance NOW before you get a diagnosis because it will be near impossible or extremely costly to get it afterwards. I wish we were paying as little for health as you are but 2 of us pay almost $1900 a month in premiums for insurance because I have an MS diagnosis.

    As Agate pointed out, the MSAA has a scholarship program to provide MRIs for those who are uninsured or under insured for MS. Drugs to treat average $5500/month so the underinsured often qualify for drug company copays in the medications..

    I hope you get answers sooner rather than later. My first hospitalization for this was in 1975 and I was not diagnosed until 1994 and not put on medication until 2001. I am doing well now but was not always. Keep pushing to find out what is causing your symptoms and how they can be helped.

  9. #9

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    Thank you all! This has been helpful.

    Hopefully it's nothing. I've been feeling pretty good lately, and every time I startffeeling better, I somehow convince myself that it's nothing, until the next time I start feeling bad again. Lol But I will check into the diagnostic information that agate posted. I did not know there was such a thing, so that will be helpful. :)

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