Advice please

Kristal, why are you on the computer at 5am? :weird:

Write everything down so that you do not forget anything. Take someone with you if possible. Explain that you have this long list of symptoms that have not resolved and that so far all the tests have been negative. Say that you have been looking into it and you think it could be ME. When I saw my GP I took her a leaflet I had found in the library and gave it too her saying \"thats me\". She read through it an agreed with me. Remember how relatively rare ME is. It wont be the first thing a GP thinks of. Your GP has done tests to rule out the obvious. I had all those blood tests first and more! ME can only be diagnosed when all else has been eliminated and you have been ill 6 months. Your GP wont think you are telling him his job. If he is any good he should be receptive to ideas. Have you got any books about ME you can take, or a copy of Alicias Guide to ME even? You are entitled to ask for a referal but it is a bit hazy about which speciality it is, unless there is an ME specialist in your area. My GP cares for me, not the hospital. Don't hope he takes the hint tell him outright that this is what you think you have.

I know you dont want to have ME but it does help if you have a diagnosis. I remember how I felt when it was happening to me. I thought I just had flu but could not understand why I was not getting better. It is soul destroying. :cry: It is easier to cope if you have a name for the enemy. As you will know from the forum there is no treatment as such only pacing. I have recently started taking Dosepulin which is an anti-depressant. It lifts your mood and helps you sleep ( it also makes you fat!) :cry: but you cant have everything :roll:

If you have a reason for why you feel so bad it does help you cope better. Hope this helps, have a hug too :hug:

Dale xxx

Kristal - the ME Guide for Non Sufferers is excellent and easy for people to understand. If you want a copy send me your e mail address in a PM and I will send it to you.

I cannot promise your GP will accept what it says, but you can try. And do not forget that you are entitled to ask to see another doctor for a second opinion.

Good luck. xx

Hi Kristal,

I know what you mean about not wanting to feel like you are telling the doctor their job, i felt the same. I was wanting to get referred to rheumatology but didn't want to suggest to her. :roll:

When i did pluck up the courage, she said i didn't fit the criteria. :roll:

You could mention that you found this forum and you have similar symptoms to us ME sufferers :x or you have been reading up on ME and think you may have it. :roll:

Hi Kristal

I really can't add any more to the excellent advice the others have given you.

I can remember my GP almost rolling her eyes :roll: when I suggested I had ME at a very early stage ....... I knew that's what it was, and I was proved right after the first five minutes of a very expensive referral :evil:

If your GP is unhelpful, as the others suggest .... try and see a different one. I know it's not easy for you with travelling but it's so so important that you have a proper diagnosis NOW.

Good luck

Katie xx

Thank you all, sorry I didn't respond sooner but I didn't have a good day yesterday .... mainly due to a badly disturbed sleep the night before which is why I was at my PC at 5am drinking tea :?

That is great advice and it has also given me a bit more confidence to tell him outright that I think I have all (I mean loads) of the symptoms.

The trouble is I know I can be my own worst enemy because I hate bothering people with things and as soon as I get in the waiting room and see the queue of people I start to feel sorry for the poor overworked doctor and then the first thing I do when I see him is ask how [b:f5e192acd8]he[/b:f5e192acd8] is, how bizarre is that :shock:

Anyway, I am going to do as you suggest and print off a list of the symptoms and tick them off and even add some more specific information of how it is affecting me and then I will try not to feel sorry for him :lol: , I just hope that Tuesday is a good day and I have the energy to go through with it.

Oh thank you Lou Lou for the message, I found the BRAME website very helpful and thank you Alicia but I haven't worked out how to send a PM yet :doh:

I hope the sun is shining wherever you are today and it makes you feel good.

Kristal

xx

Hi Kristal to send a private message to a persom you press the pm at the bottom of a persons post to send them a message. If anyone else wants the brame web details just sent me your details.

Oh thanks Lou Lou, that was far too simple for my poor addled brain to figure out :oops: :oops:

Kristal

xx

Don't worry Kristal ... we know all about addled brains on this forum :roll:

I think, like me, you are fairly new to computers ...... it's alright for these youngsters :lol:

Took me ages to work out how to use the extra emoticons ..... but I was really thrilled when I did :roll: How sad is that?

Everynow and then I call out to my hubby 'my computer says 'NO'!

He's always sorting it out when I press the wrong bits ..... but I still try to keep this forum secret 8) It's for my eyes only :wink:

Back to your GP visit ..... don't forget they get paid one hell of a lot of money these days for not many hours work, so don't feel apologetic and feel you have to rush things ........ you need some answers ... your illness has gone on for long enough. You are quite within your rights to be referred to a specialist though the waiitng lists are so long :roll:

Anyway Kristal, good luck ... we will all be waiting to hear how you get on.

Katie xx

Thanks Katie, I know that there aren't many destitute doctors around these days but I was raised by a Mum who always used to say that there is always someone worse off so I guess I can be a bit of a pushover .... unless of course I am really riled :x like you trying to give a V sign to an inconsiderate driver the other day.

My hubby doesn't like me driving if he senses that I am in one of my Rottweiller moods :x :x :x I like to think that he is being considerate but really he is fearing for his own safety in case I try to jump out of the car and bop some big burly builder on the nose :lol:

Want to hear something funny, guess what my last job was :?:

I worked in IT and I actually used to train people on computerised systems so I guess it shows how badly my brain is fuddled nowadays :roll: :lol:

Take care

Kristal

xx

Whoops, Kristal ...... have I just dropped a big clanger .. :lol:

Tee Hee ....... sorry about that :sorry:

Seriously though it really is sooo frustrating how befuddled the brain becomes .... I think what I miss the most is reading. I used to read at least two books a week, but I'm lucky if I finish one in six months, and then I have forgotten the beginning :roll: .. So I mostly stick to reading newpapers and magazines :thepost:

Yes, it's funny how driving brings out the worst in us. I only dare do local driving these days and never offer to give lifts to people. I have to concentrate so hard I tire easily :roll:

ME really is a life-changing illness ...... but we are not going to let it beat us :ok:

Take care

Katie xx

Don't worry, I am the first to admit that my brain is totally fuddled now :shock: , I am still giggling and even my hubby thought it was funny too :lol: :lol: :lol:

I used to love reading too but get so frustrated now when I can't remember who all the characters are. One of the most embarrasing things I find I do now is to start a conversation and then forget what I was talking about, people must think I am a right dim wit sometimes :roll:

Oh and I just don't seem to be able to remember names anymore, I think I will just have to resort to calling everyone [i:e3d76c94a7]thingy [/i:e3d76c94a7]

Take care

Kristal

xx

oh the brain fog is the worst

i've always been very 'bookish' with a passion for critical theory, so this has been really upsetting :cry: as you can imagine, trying to do the research and writing necessary to complete my master's dissertation is impossible at the moment. when i first started getting ill it was such an effort to concentrate id end up putting my head on my desk in the library and going to sleep :zzz:

when im really bad with the CFS reading anything makes me tired, although im not too bad at the moment and am managing to get through Hard Times ok, and a lot of newspapers!

on the plus side it did prompt me to start fiddling round with my stereo, whereupon it promptly tuned in every radio station known to man ON IT'S OWN! AMAZING! :wizard:

Im now listening to the asian network. by the time i get better i will have the most amazing musical knowledge and be able to speak fluent panjabi :lol:

Trees x

:lol:

Phew, it's just as well we are still able to have a good laugh at things :lol:

:lol: :lol: :lol: :lol:

Anything that makes me laugh is fine by me.

Kristal

xx

:lol: :lol: :lol:

Hi Kristal :D

Good luck tomorrow with your GP. Stand your ground and don't be fobbed off :evil:

You need answers :ok:

Katie xx :D