Trying to answer that question

It is amazing just how fast MS can bring you down to a point where you feel like giving into it and then just a couple of days later, you are once again able to cope with all of it again. On Monday I could have with easy just lain there and let go, but this morning I am now back to where life normally chugs along day after day. I have lost count how many times in my life that I have spun downwards into feeling so ill that I just can’t really cope with any of it, far to many of them where before I knew what was going on. I mistaken them all for depression, I suppose because that what I was told when I was just 22, although I was never happy with that diagnosis, it just didn’t fit. Every time I argued with the doctors that I was in pain, real physical pain and so tired I didn’t know what to do with myself they brushed it over, telling me that was how it was for some people. I guess there are now many who at the time were misdiagnosed as I was, now know the truth, if they managed to live through it to actually find out. It doesn’t matter which year you choose the symptoms were always the same, increasing pain to a level I just couldn’t cope with it, muscles that wouldn’t obey and a selection of other symptoms I now know belong to MS. Flares can last from a few days to a few months, but when you are being treated for the wrong thing it makes it even harder to deal with. The only good thing was that every time I had a flare the doctor would put me on Amitriptyline to treat my depression, it also deals quite well with nerve pain. It is hard to explain now how a flare really felt when I didn’t know what was going on, yes when you don’t understand something that is happening to you it clearly becomes scary, even more so when doctor after doctor tells you you are wrong, there is nothing really wrong other than depression. But when you can hardly get up and down stairs because your legs won’t carry you, well you know within yourself that they are wrong.

I have been asked time and time again how do you get a doctor to listen to you and get the right tests done, I wish there was an easy answer. My diagnosis happened due to my being sent for test on my balance in the ear, nose and throat department, they sent me for an MRI as they could find no reason for my problems and the MRI found my MS, I was diagnosed not because they were looking for it, but because they were looking for something else. I know all to well that all sounds rather depressing in itself, 20yrs had passed from first symptoms to diagnosis, but I got there. My illness had become progressive and it was no longer hiding, they could actually no longer really miss it. I guess the only way of getting a diagnosis is to keep chipping away at your GP, keep going back every time you don’t feel well, every time you have a new symptom and every time something changes. Persistence is what it really takes and be prepared for it to take time, especially if it is MS as your flare will be gone by the time a hospital appointment arrives, so when you see the specialist, you are once again well. I wouldn’t advise going into see your GP with a list of possible conditions you might have, that is more likely to result with a note on your file saying hypochondriac, rather than that you have proactively researched possible conditions, doctors don’t like to know you have internet access, they also like to believe that they are the expert not you. If you don’t feel your doctor is taking you seriously then change to an other GP, I went through 4 or 5 before one really listened, mind you I did on that occasion go in to the surgery and announced I wasn’t leaving until something was done and that I was going to keep coming back again and again, until we know what was wrong. I wouldn’t try that one though unless you already know your doctor, someone who doesn’t know you might take that as some what aggressive.

It doesn’t matter if you are on your first flare or on your millionth, not one of them is ever expected and not one is the same as the last one. To be honest what happened over last week into the start of this week I doubt would actually really count as a flare, especially for those with relapse remitting MS, maybe more of an increase in symptoms. Flares are aggressive and usually result in a major change in your condition. They also often leave you in hospital having large doses of intravenous steroids and that hospital stay could be for several weeks. Because my MS is progressive relapsing I get these huge dips, that level out again usually leaving me with a permanent decrease in ability, of some sort, then I also get the major flares, always resulting in something being damaged and never recovering to the full. If I had to be honest living with the knowledge that at any point in time I could suddenly disappear into a huge flare, one that could leave me totally disabled and never able to walk or talk, or what ever area of my body it chooses to attack, well it’s hard. I suppose like most people I know what could happen, but I continue in the belief that it won’t, yes I am kidding myself but I need to get through not just today, but the rest of my life.

Diagnosis, isn’t the magic pill to getting better, it is though the magic pill to putting to bed a lot of questions, as knowing the name of your personal monster lets you move on. What we all want from our diagnosis is a cure, for some that will happen, but for even more it won’t. I am totally at ease now with the fact that I will never have that magic cure, no matter what the research, it is those who are not ill yet, who are the ones who will be cured. With all progressive illnesses if you are caught early enough when only a very little damage has been done, well they may be cured, but someone like me, well I would need a totally new body, as there is little not damaged past repair. 30yrs of being ill, 30yrs of learning and I can still say totally honestly that I am still learning about being ill and living with it. So why are we so surprised that a diagnosis, of one small condition out of the millions that are out there takes our family doctors longer than one consultation to know what is wrong with us. It will take time to know what is wrong, don’t give up just keep going back.

5 thoughts on “Trying to answer that question

  1. This post rings true for me too. I haven’t yet had a diagnosis of what is making me dizzy and weak etc. I am due to go to the ENT dept on Saturday for a MRI scan. OOh eerr…wish me luck !

    You are very understanding that the docs have taken so long to get to the bottom of what has been troubling you. I can’t say I am at this point anything other than frustrated. I must confess that I did expect to know what was wrong with me by now. Having read your post, I realise I will have to be patient.
    Take care and hope your next day is better than the last xxx

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  2. diagnosis is at least a step in the right direction isnt it at least then you arent thinking I might have this that or the other mind you saying that even when I was diagnosed it wasnt a definate diagnosis the “specialist” said that the only thing he could put it down to was possibly an acute attack of MS hardly conclusive stuff is it. Of course my GP wasnt really useful either he was one of those that want you in and out without haveing to hear your voice too much. THankfully since moving a couple of times I have a nice doctor now that accepts my illness and doesnt just brush my symptoms as attension seeking or laziness 🙄

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  3. So sorry you were sick and in pain for so long. I hope you don’t get a flare. I call flares with my neuropathy . Burning and like glass rubbing together . Try to have a good day. Your cyber friend margee

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  4. I am sorry to read about what you went through. It seems to me that YOU’d (not a doctor) be the one with a more keen (meaning intuitive) understanding of what is the cause or trigger of painful experiences.

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