Help!!!New doctors appointment Wed6th and no idea what to say in the short time!

New diagnosis and before diagnosis
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Well… I did it! i’m very pleased with myself, though I did make a mess up of the booking system but not saying straight away the recommended doc i wanted, then accidentally implied the others were rubbish…but hopefully that won’t count against me, i was terrified! i have also booked it under the guise of a white lie to my mum, saying i would be going to ask about something else cos that was the only way i could get her “permission” to make the app. I know I only have 10 minutes, so here is what I hope I will get out, and i welcome opinions/suggestions for better phrasing!

I have been experiencing random and worrying symptoms since October 2010, I have had one blood test done for I believe anaemia and glucose, tho am not sure, this came back fine.Since March/April this year,things have started to get quite bad again,there is a long list of symptoms but these are the main ones causing me trouble right now: (hand over list)

1-Pain - crushing in feet,general ache and stiffness in legs and wrists

2- Numbness in feet and legs

3- Sensory - burning,itchy,prickling,buzzing sensations all over

4- Tremor/twitches - Legs/hands

5- Cognitive - trouble focusing on reading,seeing words the wrong way round,saying words wrong way round,word finding and articulating words.

somewhere in with pain and tremor i was going to mention that this occurs more at the time of the month (what im allegedly seeing her about), as its true, it does, and ask if she can’t help on the overall front, can she help with that? That way, im not confusing the issue even more and its not a total lie on my part.

I’ve also booked it during work time but just had to get it out of the way before i had the chance to chicken out, so cross your fingers i wont get in trouble! i do have an understanding boss, but you never know…

I’m not sure if I have catagorised stuff right, could anyone clarify? If you were doctors, would you be bored with me,maybe its long winded?

thanks all!

Jules

xx

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p.s. sorry for posting so frequently!

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Sounds good to me, but be careful about handing over a list - they have a habit of being put into medical files without being properly read! It’s nice and short though, so you may well get away with it. If I were you though, I would take two copies in - hand one to the neuro and keep one for yourself, then talk through it with the neuro.

As far as being worse when you have your period, why not just write an asterisk next to pain and tremor and put a note at the bottom “*worse when having period”?

Good luck!

Karen x

PS Bit confused about the secrecy with your mum. Have you not told her?

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No, my mum knows very little.When my first symptoms came along I was so scared of them,I forced myself into denial so did not think to tell anyone,I just didn’t want it to be happening. Of course I know now if I had said something then i may have a dx by now, but put yourself in my shoes, my breathing was so shallow and I was convinced i wouldn’t be waking up in the morning,I couldn’t speak properly,couldn’t think,sometimes could barely move, i just thought if i didn’t think about it it would go away.So might be adviseable to read through the list with her, then hand over? Btw, its just regular GP, not got as far as neuro yet.

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I didn’t realise it was the GP you were seeing. I suppose the same applies, but perhaps not so strictly - hopefully your GP will have a better bedside manner than a lot of neuros!

I obviously don’t know your home circumstances, but as a mum myself, I would just like to say that if I were your mum, I would really like to know what was going on so I could help you through it. Maybe think about telling her? It must be awfully lonely, keeping it all to yourself. (Apart from us of course!)

I hope it goes really well with the GP :slight_smile:

Karen x

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Its really lonely, i was thinking of telling her today, cos when i told her about my legs not always going she was a bit concerned, but when i tried to approach it from that perspective again with a view to elaborating she brushed it off as nothing. im very confused, guess she just doesnt wanna accept anything being wrong. Thanks,first time ive met her but she is recommended by a colleague! x

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Maybe she’s not ready to accept that there could be something wrong with her “little girl”? Or thinks that by brushing things off, she’s helping you?

If you really want her to be involved, then maybe you need to sit her down somewhere quiet and ask her to listen until you’ve finished?

It might be hard, and she might not be ready (denial can affect everyone, not just patients), but it might be worth trying?

Good luck.

Kx

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Hi Jules. I think you have covered alot in your post. Are you planning to go in with a list or just discuss things from your list? I would also think it might be a good idea to put in a little about how concerned you are with your symptoms, and that maybe it would be a good idea to be referred to a neurologist. I think (some) doctors can sometimes put things down to stress, so dont be fobbed off with that one. You can ask for a referral. You can ask for more blood tests. It is your body and you know there is something wrong, and you are worried, so dont be fobbed off. Ask for meds to help with symptoms if you need to.

Can I also just say that as a Mum I would be really upset if my child hid something they were worried about. I think you do need to speak to your Mum and tell her you are worried. I really hope she is supportive and maybe even comes to the GPs with you. Good luck Jules and please let us all know what happens.

Paula xx

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Well done Jules see you can do it…positive mental attitude.

Its your life and health.

You have done well at doing your symptom list down to how you now have it, and would agree with Paula that you mention the neuro bit because you are so worried about your symptoms to avoid the being seen as anxiety driven.

You are the expert on your symptoms so if his questions take you away from what you want to say its your appt bring him back to what you want him to hear.

All the best and Im back Wed,if you want me.

Well done you onwards and upwards

Pip

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hi paula, yeah i was gonna take 2 copies of the list in, one for her to keep (if she wants) and one for me, and hope to go through it with her, i never knew i could ask to be referred, didn’t know i had that right thats useful to know! I’m planning to talk to Mum on Tues, just to ease her into it, was gonna say something like " do u think i should tell the doc. about my funny turns?", cos even Mum can’t fathom those and then it would be easier when it comes to whatever the doc. says to say that we got talking about my funny turns and maybe doc. says i should see neurologist? i know im expecting the impossible, but i feel i need to have potential outcomes anticipated to know what i then have to tell mum.

xx