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  • No Insurance -- Should I Get Diagnosed? What Should I Do?

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    Old 08-16-2007, 10:24 AM   #1
    Dawning3
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    No Insurance -- Should I Get Diagnosed? What Should I Do?

    Hi. I'm a 35-year-old mother of three. I have suspected for about five years that I may have a neurological disease. I first started noticing problems just before the pregnancy of my third child. I read a lot about MS symptoms disappearing during pregnancy, so I kind of ruled it out, since mine only got worse. My biggest issues were twitching muscles, spasticity, involuntary jerking of feet (especially at night), and severe constipation (The constipation started several months BEFORE the pregnancy. I was taking Miralax medication). I talked to the OBGYN about it, but she just wrote it off as pregnancy or anxiety related (I've never been diagnosed with any type of anxiety disorder). When the symptoms were still there almost a year after the birth, I finally saw a neurologist. She tested my reflexes and said that she didn't think I had ALS, but she wanted me to have an MRI done to rule out things like MS. Since I didn't have insurance, I decided to just learn to deal with the twitching muscles and involuntary foot jerking. The constipation and spasticity had gotten better.

    In the three years since that visit, I have developed some new symptoms. First, I started noticing frequent dizzy spells. Once, I even had an episode where the entire room was spinning a million miles an hour. I was scared out of my mind! Luckily, that type of spinning hasn't happened again. Also, my eyes (mainly the left one) frequently have pain (on the sides) and blurriness. Just when it seems like I'm going to have to go to the doctor for this problem, it seems to get better, so I never do (remission?). I've also been having sexual problems. I've lost a lot of feeling and desire. I could reach orgasm, but couldn't feel it. That scared me too. It was the strangest feeling! I've been doing Kegel exercises for months and they seem to be mildly helpful, but the feeling is still greatly reduced from what it used to be. My newest and most embarrassing symptom is overflow incontinence. I urinate, but the minute I stand up and pull up my pants, I can feel the urine dribbling again. It dribbles off/on all day. I've been doing the Kegel exercises for this too, but it doesn't seem to be helping at all. It seemed like my twitching had gotten better over the years, (Maybe I just got used to it, so I didn't notice it as much. It definitely hasn't gone away completely.) so I started to think that maybe nothing was physically wrong with me, after all. Now, though, these other symptoms tell me that there is some type of problem. I've also been having severe exhaustion and mood swings.

    My husband and I started a company about six months ago. We're just barely making enough to pay our bills. There's absolutely nothing left for health insurance, which is ridiculously high for the self employed. We're making TOO much money to qualify for any type of government help. Even before we had the business, my husband's company didn't offer health insurance for his family. In his line of work, he rarely gets benefits. I thought about getting another job myself for health insurance, but I'm not sure how my health history would affect it. How much of this problem would I have to disclose? If I DID somehow qualify for insurance, would they DISQUALIFY me when I went to the doctor and told him about all these problems I've been having for years. I haven't told any doctor a thing, since I went to the neurologist about three years ago. How long would this be considered pre-existing?

    I would appreciate any guidance/advice you could give me. I'm getting really scared! Whenever I try to talk to my husband about it, he acts like I'm some type of hypochondriac. He gets angry and says he's sick of my complaining. Then, he goes on to list all the things that hurt on his body, saying that he has to suck it up, so I should too.

    What would be the advantages of getting an MS diagnoses? Is there medication that could stop the bladder nerve damage before it gets any worse? Do my symptoms sound like they could be from another problem, like maybe diabetes?

    I don't know if this could be related, but I keep reminding my husband about the two times my son broke mercury thermometers in our bed, when he was a toddler. I was so young myself that I had no idea about the dangers of mercury. I picked up the little balls by hand and put them in the trash can. Whatever I couldn't pick up, I swept with the vacuum cleaner. The bed appeared clean, so we slept on it the same as usual, without disposing of the sheets/blankets. I've been hearing so much about mercury poisoning now, that I always wonder if that had anything to do with my problems. My husband says that's just about the most far-fetched thing he's ever heard, but I thought I'd mention it, just in case. One more thing: I grew up in a house with no heat a lot of the time. A while ago, I read that growing up in a cold climate could cause MS.

    Last edited by Dawning3; 08-16-2007 at 10:30 AM.

     
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    Old 08-16-2007, 01:20 PM   #2
    acrafton
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    Re: No Insurance -- Should I Get Diagnosed? What Should I Do?

    Ok, you are in a bad place.

    First of all, no one knows what causes MS so don't worry blame yourself about heat or mercury, etc. If you have it you have it and don't head off to get your fillings removed. . .

    Re insurance. Not to point out the obvious but it is really foolish to not have health insurance. Sorry, but regardless of your diagnosis decision either your or your husband needs to get an extra job to pay for insurance for your and your kid(s).

    If you try to get insurance after a diagnosis unless it is with a group policy (via employer for example) they will most likely not cover MS and the meds ($1500-2000 per month). If you get a policy prior to diagnosis DO NOT LIE or OMIT information on the application. Most will have language that asks something like "do you have symptoms that a reasonable person would seek medical care for.. ". They will also have very specific questions for you. If you lie and they find out you will not get covered and get cancelled which will go into your 'permanent' file. . ..

    Also, if you sign up, pass underwriting and get covered and then immediately get diagnosed with MS they will go back and investigate your ENTIRE medical history to look for something, anything, you may have left out - even stuff unrelated to MS. If they find it they will cancel you.

    Tough place, I know. . .perhaps the best thing is for one of you to get a job with a large employer that provides coverage.

     
    Old 08-16-2007, 01:50 PM   #3
    Dawning3
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    Re: No Insurance -- Should I Get Diagnosed? What Should I Do?

    It sounds like no matter what I do, there's no hope of ever getting the MS covered, at this point. Is that true?

    The $1500-$2000 medication you mentioned -- what exactly is that for? Is there anything to stop the weakening of bladder muscles?

    This is so scary!

     
    Old 08-16-2007, 02:11 PM   #4
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    Re: No Insurance -- Should I Get Diagnosed? What Should I Do?

    Hi Dawning
    First of all, I agree with acrafton on most of her points. However, it is more important that you understand what is happening with you NOW more than ever. What she is talking about is the pre-existing condition clause. And, until you have a dx of ANYTHING, and until you are being treated for it, it DOES NOT APPLY TO YOU. Meaning, RIGHT NOW IS THE TIME TO GET INSURANCE! If you wait, until you wind up in the hospital ER or wind up having an accident driving and someone sticks you with a diagnosis of anything- you wont get insurance down the road.

    Now, you asked about the meds...lets assume you have MS. MS Disease Modifying Drugs, such as Copaxone, Rebif and Avonex are between 1500$- 2000$ a month. They are injectable shots, which you give yourself. Are they necessary? No. A few people subscribe to the theory that they can manage their illness the way you have so far- by eating right, exercising, and maybe taking supplements. HOWEVER there is HUGE proof that using the disease modifying drugs slows down the progression of the disease, stops new symptoms from forming and basically delays disability, probabaly PERMANENTLY, but nothing is guaranteed....(I personally am on Rebif).

    Im going to ask you a hard core question. You have children. What are you going to do if this problem you are having ISNT MS? I mean, there are so many autoimmune diseases out there, some of which you actually do die from. Do you really think you are doing anyone a favor, saving money, and not getting treatment? I hope and pray that you have nothing wrong with you. I pray that if you DO have MS, you havent already done permanent damage to yourself.....if you understand how MS works, then you know that some damage is permanent and irreversible, while other damage, if caught in time, and while taking the correct medication, can be reversed.

    I wish you well. But, truthfully, it seems alittle silly to put off finding out what is wrong, especially when it might be nothing at all to worry about. One way or another, you should deal with this- or else youre not going to have to worry about it down the road. Someone else will be picking up your pieces and wishing you had.
    Good luck sweetie, Tough position, but thats why the Government in our county exists, and that is why help is available. There are clinics, university hosptials with sliding scale bases...there is help available, you have to want to get it.
    I am on your side, but your symtpoms which you are experincing now, are warning signs....it may have taken 3 years for them to get to this point..but in the next 3 years, you might be dealing with much worse. Your eyes, espcially, should be investigated. Many a good opthamologist have diagnosed MS and other autoimmune diseases by doing the right tests....please contact someone and get yourself some help.
    N
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    Old 08-16-2007, 02:13 PM   #5
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    Re: No Insurance -- Should I Get Diagnosed? What Should I Do?

    Hi, Dawning. First of all deep breath.

    True that symptoms most frequently disappear during pregnancy but just because yours didn't wouldn't rule out the possibility of MS. Some of the things you're describing can be symptoms of MS but not MS alone.

    There is a place that several on this board have gotten a free MRI from and although I don't take medication, I know that most of the drug companies offer help but I'm not familiar with the financial requirements for either. However, that really doesn't solve your problem in a huge way because we're talking about seeing doctors as well, whether or not it's MS. For many, the dx process can be a long process.

    I don't think you would have to disclose anything about your health unless it interfered with a (potential) job. If the neurologist you saw didn't give you a dx (sounds like they didn't), it wouldn't be on record and considered a pre-existing condition. It is true that different places and companies have different procedures concerning this. Every company I've ever worked for has covered a pre-existing condition when I've been hired.

    Re: the mercury in your son's bed, I wouldn't worry about it or even mention it to a doctor. This is coming from someone who doesn't think that mercury fillings in your mouth is a good thing but who hasn't run out to get all of hers replaced, either! I'd make a wager that the broken thermometer didn't cause your neurological problems, whatever they are.

    MS meds are designed to slow down the progression of the disease but that's a whole other conversation. You are so not even there yet though! First things first, you need to get to a doctor and if you're concerned that something will be found, try to get yourself in a situation where you have insurance first. If you're a member of any organizations, unions, etc. or might be eligible to join one, they sometimes offer group plans. I am self-employed and got group insurance by joining an association affiliated with my profession. As an independent contractor, I previously had individual insurance but looked for a group plan because they usually offer the better coverage for a more reasonable amount but that said, if I hadn't found this option for myself, I would have continued with individual insurance. I strongly believe it is a necessity, and especially with a family.

    Good luck to you but please, take it one step at a time -- and MY first step would be to try to get insurance and the second would be to find a very good PCP to start.

    Last edited by Bearygood; 08-16-2007 at 02:15 PM.

     
    Old 08-16-2007, 06:23 PM   #6
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    Re: No Insurance -- Should I Get Diagnosed? What Should I Do?

    Quote:
    Originally Posted by Dawning3 View Post
    One more thing: I grew up in a house with no heat a lot of the time. A while ago, I read that growing up in a cold climate could cause MS.
    I wanted to comment on this and forgot. It's not the temperature you read about; it's the sunlight factor, which has given way to studies about vitamin D3, which is recommended as both a daily requirement and often recommended for people with MS in higher doses. There seems to be a greater percentage of people with MS who grew up in colder climates but it doesn't mean that people from warmer/sunnier areas don't get it. Vitamin D3 (which is the "sunlight" component of vitamin D, as opposed to D2) is actually processed by the body like a hormone.

     
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