Not yet diagnosed- Terrified of not being taken seriously

New diagnosis and before diagnosis
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Hi everyone.

I strongly suspect that I have MS and am an emotional wreck right now. I don’t really expect to find any answers here but I thought talking might help me to cope. I’m self employed and not getting much work done lately because I just keep bursting into tears, I’m just so scared and need to get a grip :frowning:

Let me start by saying that I’m not a hypochondriac, I rarely go to the doctors but I knew I had another auto-immune disease before and was right, I just have a sinking feeling, I feel I’ve always known but was in denial and I know somethings very wrong.

It started a couple of years ago when out of the blue I had horrific bladder pain, it was debilitating, I couldn’t go out, I couldn’t sleep but despite this the doctors didn’t take me seriously, it took 10 months of agony before I finally got to see a urologist by which point the pain had almost gone and I was just left with annoying increased urgency which I still have today. The urologist did a few tests and said there was nothing physically wrong and that I had an over active bladder which I was prescribed pills for. I strongly believe that the pain was my first attack and that my overactive bladder is a consequence of the nerve damage that was caused.

Anyway once the pain had gone, I put it to the back of my mind and just prayed that it was a one off and hoped that my bladder symptoms would improve, but to be honest I think how I am now is as good as it will get. The past couple of months I’ve begun getting pain and pressure behind one eye that comes and goes and no medications seem to help. I’m at the point now where probably 50% of the time I have this pain and it does sound like the type of pain that some people get with early MS. On top of that I’ve had a couple of instances of soreness of the skin on the back of my arm, like bad sunburn but there’s nothing there and once a feeling like someone was squeezing my leg tightly, I even had to look under the covers to check there was no-one there lol Typically when I woke up today I was free of eye pain, what’s the betting that when I go to the doctors about it, it will be behaving that day!

I just know it’s MS, my other half thinks I’ve just googled too much but thats not it, I feel like I’ve just stopped ignoring the symptoms now and I’m finally facing upto it. It scares the hell out of me, my gran had MS and was wheelchair bound for her whole adult life, I don’t think I could bear it and I don’t want my partner to be my carer, if he sticks around, which i’m fairly sure he would. I don’t want that life for him, he deserves so much more. I’ve booked a doctors appointment for friday but after my experience with my bladder issues I’m so scared they’ll just fob me off. I’ve made a list of my symptoms so I don’t forget anything but will this make me look like a hypochondriac? I remember one GP told me off for using an emergency appointment for my bladder pain, I just broke down in tears, I couldn’t believe that they thought my pain was nothing and didn’t deserve help, what if they don’t listen to me again? What do I do then? I just want to get the tests that I need and know for sure so that I can get the help that I need.

Sorry this has turned out to be long, but it has helped just to tell someone, I’ve stopped crying now! Any advice of how to deal with the GP would be much appreciated.

Thanks in advance x

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The best advice is to avoid any suggestion that you have diagnosed yourself. You’ve done the right thing by listing your symptoms. This will help the GP and make him/her realise that you’ve organised and have got your act together. I agree with your partner that you’ve scared yourself silly by using Dr Google. He is the worst doctor in the world because he’s had no training whatsoever. Let your (fully trained) GP make the decisions and guide you through the process towards identifying what’s going on. Regards, Anthony

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Hello

Yes, Dr Google is a crap doctor. Avoid him.

You should be aware that there are countless diseases / disorders which look like MS but are not. So going to a doctor and saying, ‘I think this is MS’ isn’t going to help you out.

Seeing your GP and giving a brief rundown of your recent symptoms and asking for a referral is the best plan.

Meanwhile, try to put MS right at the back of your mind. Regardless of a family member having it, you probably don’t.

All the best

Sue

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Thanks for your replies. I’m trying to stay calm about it and just take it one step at a time. I guess it doesn’t help that I have little faith in doctors after the appalling treatment that I’ve had regarding the bladder issues but I’m seeing a GP that I feel more comfortable with tomorrow so hopefully she will take me seriously.

All the best and thanks again.

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Sorry that you’ve had such a tough time with doctors previously, and that you’re now having more health issues - it never rains but it pours hey?! Listing your symptoms sounds like a great idea - as the others said, don’t say to the GP “I think it’s MS” but take the time to explain the symptoms you’ve experienced and the impact they’re having on you, and if the GP suggests you monitor them further and come back if they get worse, say that you’re already very concerned and ask to be referred for tests. My GP referred me for blood tests in the first instance because there are lots of easily treatable issues that can cause MS-like symptoms, and it was only after the blood test ruled those out and my symptoms worsened that I got a referral to neurology - so please don’t be frustrated or disheartened if a neurology referral isn’t the first course of action, because there’s every chance it’s something simple to fix :slight_smile: I hope the appointment goes well - let us know how you get on! Sarah

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Hi Pupps,

I completely understand where you are coming from right now. And I also understand that it doesn’t matter how much people tell you to forget about it and get on with your life, you can’t, because it’s affecting you so much and you just want an answer. I really do get it.

I also know that it’s probably not what you want to hear, but without running the tests, no one can know what it is sadly. But it’s getting them to believe you and to run those tests. I too, hate the feeling that they’re not going to believe you.

I don’t know if it will help you by saying this, but I have had many many doctors tell me it’s not MS and that it’s stress/migraines/Fibro etc etc. Feeling like a complete hypochondriac. From day one they asked what i thought it was and i told them MS. I didn’t want to be dishonest and say I wasn’t worried about it. And now, after 3 years, many appointments, tests and relapses. I have a lot of results that can only now point to MS and it is currently “probable MS” which is so far from where I started. But it took finding that one doctor that believed me and insisted my neuro ran all the tests. Only then did she.

I’m not saying you have MS. What I am saying is, if you believe something is wrong, don’t apologise for seeking help and insisting you see the right people. Your GP has a duty of care to listen to you and try to help. Keep going back, keep getting everything documented. Because for me, that leg work now has provided me with the clinical evidence of relapses etc. So it’s worth it in the end. Whatever the eventual diagnosis may be.

Dr Google can be a bad thing, but asking to see the right specialists that correlate with your symptoms and having a little knowledge is definitely not a bad thing. But please don’t rule out other things. Research those too, and keep an open mind about other possibilities. Because everyone is right when they say, there are many things it could be at this stage. I hope you get some answers soon.

I really feel for you. I hope that the support you find here helps a little. I know it has for me. x

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I agree with other posters about keeping an open mind and a clear, crisp summary of what has happened and when. In the interests of giving the GP all potentially relevant information, I would be inclined to mention the family history, particularly if the GP seems reluctant to refer you for a neurologist to have a look at.

Good luck.

Alison

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Thanks again for all the support and helpful comments. I’ve seen the doc today. She was really good about it, but like you Kate167 suggested maybe migraines etc but she listened and didn’t fob me off. I’m having bloodtests on monday to rule some things out and then the following week the same doctor is doing what she called a Neurological assesment to help her decide whether to refer me or not. So it’s a good start. Hopefully it is not as bad as I fear but at least we’re getting started with tests etc incase there is anything to worry about. I feel a bit better about things now!

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I was just about to say, you sound much better. I’m really glad she listened to your concerns.

Let us know how you get on.

Much love.