Off to see my eppy nurse today to see if any of the neuros at that hospital are prepared to do anything now the psych says it’s not in my head. Don’t hold you breath anyone! My gp wants me to ring her when I come out and if I get no joy she will send off the referral to Leeds. I’ve been feeling really bad recently and struggling with walking and balance and it’s made me stroppier. I am ready for a battle and won’t take any s**t!!! Xxx
Onwards and upwards.
Go get em girl.
Telling them you want your life back usually shows them you are at the end of your tether with your symptoms and that your quality of life is ####.
I wish you all the luck in the world
Pip
Good Luck today Nikki - just ensure that you tell your eppy nurse how bad things are atm. I was crying to my GP recently about how awful my bladder problems were and she expedited an appointment with the continence nurse and enabled me get my life back. If you show her how dreadful things really are, rather than putting on a brave face as many of us do, she may try hard on your behalf! I’ll be thinking of you. Teresa xx
Good luck today. Sam x
It’s so sad that we have to fight like this when we are feeling so rubbish anyway but i think so many people have had to do the same.
You sound much stronger Nikki even if you don’t feel it atm. Good luck today Nikki. I am thinking of you.
Let us know how it goes and what the next stage will be.
Treek.x
I think I need to take page out of your book nikki. Frank
Hi Nikki, good luck with the appointment.
I never got to see the guy in Leeds. I think it was because I voiced my discontent at not having a dx after 14 yrs!
luv Pollx
Hope things went as well as possible Nikki.
X
Good luck Nikki. It is so wrong that you have to fight like this, it is their JOB to help you. That is what they are paid for…
Hope all went to plan.
Friday
How did you get on Nikki? Chis
Hi everyone. Well had a very chaotic day. I hobbled to the bus stop and just managed to get the bus. It then broke down and by the time I got into town I had missed the one to the hospital! Got there 15 minutes late and if you had seen me trying to rush to the right department bouncing off the walls!! I’m surprised I wasn’t handed a strong black coffee and sent to the nearest AA meetingIII
Anyway I asked what will happen now the psych has found its not in my head and well…Nothing. The neuro decided thats what it is so nothing more will be done. Surely even if it had been in my head they still should do something.
My nurse wasn’t impressed either but she can’t do anything but she said to get a second opinion as she knows something isn’t right. I asked her outright what the neuro had said about me and she got very cagey and just said oh don’t worry about him then changed the subject! I have decided I am putting a complaint in about him
My GP rang after that and she is sending a refferal off for a second opinion and I can choose the hospital. I was told to go for either Leeds or Sheffield.
So right back to square one but hopefully heading for square 2.
Thanks for the support everyone.
Oh and just realised jumping through hoops wasn’t the best title seeing as I couldnt even step over a spaghetti hoop lol
xxx
Hi Nikki,
What an eventful day! but you got there in the end!
Second opinion here you come.
Stay strong and positive. You will get to square 2 eventually but a little later than planned unfortunately.
Teresa.x
Well you have moved forward today Nikki. Square 2 should come sometime in the near future I think! Hang in there. You’ll get there eventually - just got to keep going. Teresa xx
Keep that lovely chin up Nikki!!! xxxx you WILL get there xxxjenxxx
Thank you all. I think without the support I’ve had here I would have accepted it yesterday and given up.
xxx
We’re behind you all the way Nikki. There’s no question of giving up. Just keep moving forward (in whatever way your legs will let you,lol). Teresa xx
Hi Nikki
I’d defo put in a complaint against the doctor.
Going for a second opinion was the best thing I did. It’s taken time (referred in May) as I saw a general neuro and then an MS specialist (Sept) but I feel that I’ve been listened too, have a choice to go for an LP or EVP, help with symptoms if and when I need it and though no diagnosis, a sense of reassurance that I wasn’t mad to think MS was a possibility though I did state I was open to whatever they thought it was and let them tell me what they thought was wrong and yes they did say it’s looking like MS though the MRI at the moment isn’t showing much.
I really hope you get a good neuro as your second opinion and that someone finally listens to you.
Good luck Nikki
Reemz
X