Lymes

wall1409

No more fits but feel like I have a huge hangover on a daily basis and when eveing comes the itchy, pin , electric shock feeling really kicks in. My daughter took me to asda yesterday, I just felt like I needed to get out the house, I was in mobility scooter but felt sickly, really light headed and couldnt wait to get home again. Its horrible when you dont know what to do, 6 weeks to see a neurologist but will ring rheumi nurse to see if my consultant is back off sick tomorrow and let her know new developments as GP deffo thinks this is inflammation of spine which is now affecting the brain, just want this diagnosed and on correct medication as I know I now definately cant work till this is sorted, just hope it can be sorted and they havnt left it too late. My husband feels useless as he cant advise, friends are saying go to A & E and tell them how you are feeling, but I dont want to drain already drained resources.
Thanks for this folks, I feel alone as hubby and daughter dont understand this, neither do I, broadband has been playing up also, but its only this site and you good people keeping me sane right now.

Wendy x

stickywicket

It was brave of you to venture out yesterday, Wendy, and I expect it will have helped a little just to get away from the same four walls even though you felt rough while out there.

I think it's a good plan to ring your rheumatology nurse tomorrow. It might be that your consultant's still away and your best bet is to go along with the GP's plan of waiting for a neurology appt. but I, too, would leave no stone unturned.

Depending on what the answer is from the rheumatology helpline, I certainly would not rule out a visit to A&E, certainly at the first sign of anything getting worse. I don't know whose resources you are afraid of draining. If you mean your own reserves of strength you might have a point. If you mean NHS resources - that's what they're there for.

Hang on in there. And keep talking to us. ((()))

wall1409

Thanks Sticky

Hate hospitals, its the waiting around and having to repeat symptoms over and over again to different staff. Will see what rheumi nurse says tomorrow, hopefully I might even get an appointment, part of me thinks if GP thought this was serious surely he would have me admitted to hospital but then again he does think its urgent enough ato need specialist intervention..NHS has changed so much.

Wendy

salamander

Hi Wendy, please don't hesitate to go to A&E if you continue to feel unwell. It's there precisely for people in your condition and you may get some tests sooner. Personally, if I had had a fit I would have been there like a shot. I hope you get hold of your rheumy tomorrow - maybe they will be able to get you to see someone a bit sooner. Best of luck.

villier

Hi Wendy

Sorry just seen your post been a wee bit under the weather all week, I am so sorry to read about your fit, the others are right you maybe should have gone to A an E. Six weeks is pretty good though to see a neuro I think it was about three months I waited in my area, I think we all feel the same about hospital app's as you say having to repeat the same things over and over again, please if you are still feeling really bad get yourself off to hospital and hopefully get things moving quicker, keep us posted how things are going ((((()))))s...............tc.............Marie xx

dreamdaisy

Hello Wendy, how are things today? I hope you are staying in, I dunno about your neck of the woods but here it's been snowing constantly for five hours and it's becoming increasingly treacherous outside. I am so pleased you will be ringing the rheumatology department tomorrow and I hope that they might be able to 'fast-track' you to neurology. I am thinking of you. DD

wall1409

Thanks for all your replies

Hubby took me to walk centre as out of hours GP booked me in for assessment. Was quite shocked to be told that blood tests I had taken in November had tested positive for inflammatory arthritis and I explained nobody had told me this. He said I was initially discharged by rheumi in October but then the blood test came back positive hence he needed this second MRI which I received letter for on 19 dec and still havnt heard anything, plus rheumi nurse couldnt locate it untill GP's secretary send them a faxed copy. I told doctor I have not been informed of any of this and have been taken off all meds. Doctor has put me on 30mg prednisole to try and eleviate the symptoms and advised me to contact rheumi nurse tomorrow and demand an urgent appointment. He explained this needs a rheumatologist and a neurologist for help but did not say why just asked me what I thought it may be! I am not the expert, just the one suffering....

Wendy x

wall1409

Day 2 of steroids, hip pain has eased but other symptoms havnt, early days though. Plus side rheumi nurse has just rang and is taking initiative and booking me in this Friday to consultants emergency clinic also they have a neurologist who has a clinic in same dept from another hospital so I may not have to wait the 6 weeks after all.

Wendy x

stickywicket

That sounds like a good plan, Wendy. And I'm glad the steroids are helping a bit. Keep us updated, please.

wall1409

Thanks Sticky

I explained it like walking through a field of nettles and then its the electric shocks, they know its affecting my nerves badly and balance, dry eyes and mouth and definately not down to meds as I was taken off everything...I'm off to a cottage this weeked against docs orders but I think the break may do not just me but my hubby and daughter some good. I can remain indoors infront of log fire and they can go and enjoy walks with the dogs. Its lovely just to have someone to message as I dont feel alone.

Wendy x

PS Rheumi nurse has booked me in for 9am Friday for consultant, 1st emergency appointment and they are chasing up an MRI appointment also.

dreamdaisy

So, things are moving in the right direction at long last. Miscommunications do happen, the trouble is we don't necessarily realise when they have because we are the ones who are not told the stuff we need to know. :roll: Roll on Friday, yes? Hopefully some answers will be gleaned and don't be afraid to stand your ground until you feel you have been listened to and something is put in place for you ref. meds, scans or whatever else is deemed necessary. DD

wall1409

Thanks DD

Just hope I dont break down again like I did with emergency doc, I couldnt control myself but he was so understanding and even followed me out to make sure hubby was there to help me.

Wendy x

wall1409

May I ask for pocket duties please, I'm getting notebook out to write down whats happening, run bath hands feel the water is luke warm, get foot in its boiling and yes I realise I have not put any cold in, when I go out into the cold it hurts, the list goes on...wearing thernal thick socks and feet still hurt, dont mention the hands, head, etc etc. I'm asking santa for a new me this year.


Wendy xx