Diagnosis maze

This topic contains 37 replies, has 8 voices, and was last updated by  MSBeans 7 years, 8 months ago.

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  • November 23, 2011 at 7:05 am #6571


    marajade29sm: From what I’ve read– it would be greatly beneficial to start treatments ASAP especially in the case of people like yourself who’ve had a bout of optic neuritis. If I understood the literature correctly, it could post-pone the onset of future relapses or the full blown onset of the disease for a longer time period (with the caveat nothing is ever exactly the same in all MS people). I’d start the treatment if I was going down the road of MS anyway to prevent as much damage as possible especially if they are offering it to you (in my province you have to have 2 relapses in the course of a year to be offered pharmacare covered medications). Think of it as an ice berg: you are only physically experiencing a small fraction of the actual disease activity in your body. The meds aren’t so bad once you adjust.

    November 24, 2011 at 4:47 am #6572


    Tracey: which province has the 2 relapses in a year rule? I am about to have my first neuro appointment and if what I have is MS I have already had the 2 relapses this year.

    I’m scared and my partner makes it sound like i’m overreacting. I want to approach the subject of what happens if it’s MS is he in this for the long haul but I know he will dismiss it because to him it’s not real until the doctors say so.

    November 24, 2011 at 5:26 am #6573


    Hi MSBeans–I am in Manitoba good old Winterpeg…I mean Winnipeg :). My diagnosing neurologist told me that I had to have had 2 relapses in a year to get pharmacare covered meds….in my case I had 3 in the course of a year so I easily filled the requirements when he sent me on to the MS clinic to the neurologist I see now. The neurologist in my case then had to fillout an EDS form with the province (Exceptional Drug Status) which gets renewed annually before I could access affordable medications. You also have to fillout Pharmacare papers (which I am guessing are different for each province). Its a bit of an overwhelming maize especially if you did not need to deal with the medical system before diagnosis–which was my case. My private insurance also outright denied covering my deductible set by pharmacare and then retracted when I called them 2-3 times regarding the issue—its not the easiest of times to fight with insurance companies when you find out this kind of news.

    I understand your fear. Its not the happiest of times when you need to see a neurologist or any medical specialist. Make sure that you ask about or are tested for Lymes disease–some people get misdiagnosed with MS. I don’t know how much testing you have experienced but its just an extra caution if you are in a province with deer ticks. Apparently neurologists aren’t as good about this consideration in some provinces–and deer ticks are more widespread than most medical people realize. The Canadian test for Lymes disease is also faulty and thus should be sent to the US for the best test outcome. Its just something to consider…again I don’t know all your circumstances/testing or if this is applicable to you.

    Family and friends don’t always react in the most support matter when diagnosis is occurring or has occurred. Someone close to me told me to be positive and stop “over-reacting” cause at least I wasn’t going to die…..It wasn’t the most helpful and made me feel even more alone. I think that denial is something that many of us go through and I am guessing its the case of our loved ones as well.

    Hang in there. Hugs cause its all too real for me still how difficult this stuff is to deal with, especially when your loved ones don’t react in a supportive manner. I approached my diagnosis initially with excessive self education about the disease and tears —but I know everyone deals differently and no one response is correct.

    November 24, 2011 at 11:24 am #6574


    It is possible to start treatment before a definite MS diagnosis with two relapses. After 1 relapse and an MRI showing lesions typical of MS, you can be diagnosed with “clinically isolated syndrome” and start interferon treatments to slow things down. For some people in this situation, it can take years for a second relapse that will trigger the transition from diagnosis of CIS to MS, for others it can months or weeks.

    Personally, I would start the treatments as soon as possible, but that’s a personal decision and completely up to you.

    The EDS that Tracey mentioned sounds like the Trillium Drug Program in Ontario. Don’t the drug companies themselves also offer assistance in paying for the treatments?

    November 24, 2011 at 1:31 pm #6575


    I know for sure that avonex offers an assistance program that will cover the cost of the drugs that aren’t covered by the Trillium Drug Program in Ontario. It gets sort of messy but Trillum has an allowable maximum for certain medications and it was always less then what Avonex actually was costing me! I looked into the Avonex program offered by Biogen Canada and know they have it but never ended up using it. Maybe this is helpful! Stick with it! Drug companies are a pain!

    November 24, 2011 at 3:22 pm #6576


    Hi! Also, Avonex (Biogen) has an amazing Patient assistance program and they did ALL the work with my Dr. and Insurance company to make sure my exception status was approved to get the company to cover me. Super helpful, because after a diagnosis that was pretty much the last thing I wanted to deal with. I am sure most companies have a similar program, and totally worth looking into.

    November 24, 2011 at 3:45 pm #6577


    Copaxone has a program as well (shared solutions)–I think all the drug companies do. My interactions with the drug company nurses when they call monthly are not the most helpful (I am on my 2-3 nurse over the course of 1 year—I really liked the first one but not 2 and 3). My current nurse will not call me back when I report side-effects beyond the major ones listed and she doesn’t really know much about the medication beyond what is written on the drug fact sheet which I had to access online cause it wasn’t included with my meds. They did not want to talk to me about the drug fact sheet until I found it myself and pushed the issue about some of the minor side-effects I was dealing with at the time. I have come to realize that the nurses function to talk you into staying on meds during the side-effects but they aren’t really trained to know as much about MS or the medications as one would think……. BUT that’s been my experience and I am guessing not the experience of most people. Nurse #2 and #3 in the shared solutions program like to call and tell me that I am doing things wrong in taking my meds—they have never seen me take my meds and they provide advice before really asking many questions—and their advice is sometimes in opposition to the previous nurse. I am doing OK with my drugs so I have lessened my dependence on their support and just call the MSclinic if I have issues.

    In saying this, the drugs are tolerable for me even with the minor extra side-effects. Its the initial hump/period of adjustment when you start taking them that’s the most difficult. Like the itchies (these were really bad for a bit) I experienced for a period of 1-2 months and the welts that still form after injections (although much smaller now and more tolerable). I think each drug has side-effects you just need to let your body adjust before making a decision to switch etc.

    November 25, 2011 at 3:49 am #6578


    thanks for the info Tracey and everyone. I’m in Southern Ontario and I will mention the Lymes disease when I go in tomorrow. This has been a very enlightening thread I never even imagined that my benefits wouldn’t cover MS treatments but that’s a problem for another day…one thing at a time.

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