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Hospital today

Just seeing my epilepsy nurse but its better than nothing. I am going to ask for more help, I will beg if necessary.

Take your sleeping bag, just in case!
Good luck!
Karen x

Good luck :)

Sam x

Break a leg !

xx

Frank

Dig those heels in Nikki! Good Luck!

Teresa xx

Good luck Nikki. Hope you get somewhere.X

Thanks everyone, Luckily I didnt need my sleeping bag!

I kind of had mixed feelings, my eppy nurse was wonderful as always, she is going to try and push for the MRI results quicker. She said the letter from the last useless neuro (the one who blamed my age) was awful and she went straight to him and went mad, to the point where he admitted he treated me badly and took the letter back to change it lol

She finally came out and said yes they were treating it as possible MS but are stuck until the MRI results come back. Even though I suspected it all along it has really shaken me hearing it out loud like that. It's daft but its upset me!

She also said that if the MRI comes back clear I need to ask for a second opinion at a different hospital because even though the neuros here work independently they dont like contradict each other. She believes there is a physical cause and is doing everything possible to help.

It makes such a difference even to just have one medical proffessional on side.

Well done Nikki!  I'm pleased someone is fighting your corner at long last.  Hope you don't have much longer to wait for mri results, and don't have to go to the bother of getting a second opinion.  It must be a shock to actually hear from the horses mouth its possible MS, but its what you've suspected, and at least someones thinking on those lines too now.  If it is, at least you can start getting some treatment and understanding.  An apology for your awfull treatment wouldn't go amiss either eh?!  Look after yourself xxxx

Thanks Hunny, yes an apology would be nice but not sure it will happen lol. I am more than happy just to never see him ever again.

Typically the hospital have just rung to say my scan has been reported. Just after I was there! Not sure if I should worry since I only had it done on Thursday and they told me up to 4 weeks!

I shouldn't read too much into that, or worry either.  They always say weeks, but my scans are always reported in a matter of days, its just blooming ages till anyone does anything about them!

 

Hi Nikki

Hang on in there - it sounds as if it won't be long before you get the results from the mri and hopefully some answers soon.

It took my neuro 3 weeks to get a letter to my gp to tell him to give me something for neuropathic pain in my arm.  My gp wouldn't give me the medication till he got the letter.

3 weeks of awful pain!!! Grrrrr!!angry

Teresa. x

Nikki I really applaud your perseverance - well done. I am seeing my neurologist tomorrow - he wants to discharge me tomorrow as he does not know what is wrong. I have had just one test - a brain MRI . I know I should ask for more testing but I am scared to challenge him.

L.x.

Challenge him! Ask if he can be certain there’s nothing wrong and if so why (say it’s to set your mind at ease). Good luck!

Just read this on Everyday Living:

'...its what your doctor's paid to do. I used to work in a shop and if someone came up to me and said "can i have this in another size" i wouldnt say "are you sure you need that in another size? maybe you're imagining it? and can't you see I'm oh so busy with all these other people who really do need another size!" '

Fab, eh?

Hi Nikki.

Debc... My Dad always says that every doctor is just another person with a little bit more education than us. He also says that people cant have common sense and intelligence :D its one or the other!

Nikki.. I am really pleased that you are hopefully getting somewhere finally. Seems like its such a struggle for you with rubbish doctors! I will keep my fingers crossed for you and remember that if you have a problem with a doctor you can always complain. Try the patient liaison services as they are really good.

Good luck Nikki xx 

Hey Nikki

Well done - you seem to be finally getting somewhere at last! I understand that hearing that they are thinking that it may be MS has shaken you up. When I first heard this from my neuro I was similarly shocked. At least, it seems like you may finally be dx and be able to get on with your life.

Hope you hear soon,

Teresa xx

I know I'm lucky because I was already in the neurology system. My epilepsy nurse said today that the minute my results come in she will shove them under my neuros nose then ring me straight away so hoping to hear tomorrow.

I am feeling so jittery tonight, I want to know but I don't if you get what I mean. Its driving me mad knowing my results are sat there and I just have to wait.

Thanks for the support, I knew I could rely on you all

xxx

Nikki - crazy happy dance here!

I'm so chuffed for you - not that she siad you might have MS but at least you are being taken seriously and someone is on your side. Your eppy nurse is right about a second opinion in another hospital. My GP wanted me to see a neuro in the same hospital and I refused saying they would probably agree with each other and I wanted a completely fresh opinion.

I am really over the moon for you.

Reemz

X

hey Hun glad your eppy nurse is on your side and being proactive. re MRI once it’s on the system the neuro can look at it…he can wait forthe report but don’t actually need it but most like to have it…in my experience of MRI …it depends on who’s looking at it…regardless of the report and what this contains…on my brain MRI the inflamation on the topic nerve was quite small but it was there and not noted by the report but they eye neuros did spot it…hope you don’t have to wait tool long for results…bear in mind that if it’s not urgent or does not need immediate treatment or intervention they will often call you back up to 4 wks after…that is ambiguouse I know…but try not to panic either way…easier said than done…x