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Hi all still in limbo..and back after a break! ;-)

Hi everyone…hope you are all ok …am back after a break…and thought I would pop in again!! Thanks to all those who supported me and I hope I managed to support some on here too… Needed to take a break to get better and happy to say am allot better than I was was its seem slow and small improvements…still not driving as yet…eyes not great…bladder misbehaving with spasms and mitrofanoff valve isn’t working at all well at night…have to out a balloon cath in now and just starting oxybutin for the spasms…so see how things go…don’t want an op on bladder not yet anyway as any repair could cause new problems!! still under the unclassified neuro condition …not very helpful …all the nasties ruled out and apparently the neuros didn’t think I had ms or at least the tests were not showing this…they told my gp recently that they would have liked to have tried me on some drug treatment when I was in hospital but there wasa medical legal block so they were unable to.ie no def dx meant no treatment…and I still do not know to this day, why after all my tests and when in hospital the nursing staff at all levels were referring to each other and to me as an MS patient…my gp did not go in to review my notes…as promised but spoke to the neuro…hardly an impartial approach…friends suggest a second opinion…but I don’t see the point…unless my symptoms get worse again or I have new neuro ones…I am moving in 3 weeks to Devon…can’t wait…and although I won’t be under a neuro there I can always be refered to one should it become necessary!!! In the meantime have to manage things myself and with GP…not ideal but as many of you will know it’s the only option…I would like a new gp when I move to be familiar with someone who has complex probs like me…but no idea of who to choose on this…lol My vision isn’t great and although now boarder line for driving I have to be able to read a number plate at 20 m to re apply for my liceince…and with the oscillopsia and double vision I think it will be a challenge for sure but am off tomorow to try…apparently I had optic neuropathy not ON although they did say ON before the brain MRI and there was inflamation on the optic nerve albeit small…but Inhave neuro eye probs re eye movements…and happy to say left eye is no longer lazy all the time but my right eye is all of the time…which isn’t normal for me despite having an intermittent squint in that eye since 2 yrs old…and I have no binocular vision…hey Ho…been attending low vision clinic and still have suspected glaucoma in both eyes with the eye neuro has challenged…but as far as I know family history and state of the optic discs were the basis to start the eye drops a year ago…of course being very short sighted anyway has not helped and really wish they has done the MRI to include backs of eyes seeing as its very hard for them to get a good look on exam…!!! ok that’s enough of me…lol Em x

Hello, Great to see you on here again :slight_smile: The last time you posted, you had that horrendous experience in Hospital (hope I got that right!) You sound positive, which is great. Good luck on your move to Devon xx I’m sure you will get loads of responses, Karen is away on her much deserved holiday at the moment :slight_smile: So what happens now? Is it a case of letting your GP know when symptoms arise etc.? Sam xx

Hi Sam Thanks Hun…yes you are right re horrendous hospital stay…I now hate going there and the appalling standard of care and lack of compassion from staff was. not pleasant at all…lol lets hope the big shake ups in the nhs rectify this…but it comes down to. ot enough staff on what was a heavy load ward of complex acute cases…half were stoke and half neuro and yet staff numbers were less than wards which requires less intense input.!! Thanks yes it’s good to be back on here…so look forward to catching up with everyone…old and new… yep looks like that is the situation…and there is a small residual aspect to my neck spasm …and the muscles down each side are oversenitised…and reacting in an abnormal way…tremor is still there in certain neck positions ESP if I bring my chin down to my chest or bring my head down to either side towards shoulders…there was mention of a functional element when in. hospital but the neuros just like to use this term it seems when they can’t explain it…cause the neuropsychiatrist gave me the all clear and surely if there was this I would have been refered to him as an outpatient…??? I. ow have power assist wheels for my wheelchair…and it really helps when out and about…I am still doing my workouts and remain fit in many ways but muscle fatigue and tremor are still there but I try and work through this…not easy but each day I challenge my muscles to do more and work harder…and I won’t be beaten on this!! yes looking forward to the move and in the long run it will be for the best…going into rented accom and owners have agreed to adaptations although it looks like I will have to pay the grant back once my house sells! Anyone want to buy an adapted bungalow in Sutton Coldfield let me know!!! lol it’s contemporary and spacious and would suits all levels of disability!! bye for now…:slight_smile: Em x

Hi Sam Thanks Hun…yes you are right re horrendous hospital stay…I now hate going there and the appalling standard of care and lack of compassion from staff was. not pleasant at all…lol lets hope the big shake ups in the nhs rectify this…but it comes down to. ot enough staff on what was a heavy load ward of complex acute cases…half were stoke and half neuro and yet staff numbers were less than wards which requires less intense input.!! Thanks yes it’s good to be back on here…so look forward to catching up with everyone…old and new… yep looks like that is the situation…and there is a small residual aspect to my neck spasm …and the muscles down each side are oversenitised…and reacting in an abnormal way…tremor is still there in certain neck positions ESP if I bring my chin down to my chest or bring my head down to either side towards shoulders…there was mention of a functional element when in. hospital but the neuros just like to use this term it seems when they can’t explain it…cause the neuropsychiatrist gave me the all clear and surely if there was this I would have been refered to him as an outpatient…??? I. ow have power assist wheels for my wheelchair…and it really helps when out and about…I am still doing my workouts and remain fit in many ways but muscle fatigue and tremor are still there but I try and work through this…not easy but each day I challenge my muscles to do more and work harder…and I won’t be beaten on this!! yes looking forward to the move and in the long run it will be for the best…going into rented accom and owners have agreed to adaptations although it looks like I will have to pay the grant back once my house sells! Anyone want to buy an adapted bungalow in Sutton Coldfield let me know!!! lol it’s contemporary and spacious and would suits all levels of disability!! bye for now…:slight_smile: Em x

Hi Em, Good to see you back! It’s great that things have improved for you but frustrating that you still don’t have a diagnosis! Good luck with the move to Devon - hope it goes well! Hope you manage to find a sympathetic GP when you get there who you can grow to trust. Glad that you are feeling positive and trying to keep on top of your problems. Take care, Teresa xx

Sorry to chip in, but just wanted to say how heavy my heart feels to hear of sub-standard care in hospital. I am a nurse and although I am not hospital based now as I work in a GP Practice, it saddens me to hear these stories. I too had a shocking experience in April where I was admitted in absolute agony and could barely stand or walk, the docs were great I have to say but the nursing care (or lack of it) was disgusting. I know too well how busy wards can get but its just plain cruel to not give someone pain relief when they are written up for it on the regular side of their chart. ( I might be daft but surely if someone is admitted with pain and lack of mobility it stands to reason that they may well need some pain killers and help getting to the toilet) but oh no, the nurses barely spoke and when I did finally get some pain killers they were given to me with such a look that it shocked me)

Anyway rant over, I hope things go ok for you xxxx

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Hey Ems!!! Where are you??? Are you in Devon yet???

xxxxjenxxx

Hi Everyone,its like school re- union. Thanks Jen for dropping me the line. Its a tonic to see all the familiar names and avatars. I’m still in limbo though the past few weeks have definately demonstrated that things are worse when the temperature goes up. Maybe just maybe there may be someone.eith the bottle to delve i to the archives and dig out " Where are people from" - the longest ever posting ! lt may even make you smile. Take Care and …etc. Fluffmeister xx.

Hey Em

Gosh this is an old school reunion. I haven’t been here much myself recently but it’s nice to see the oldies back :-).

I don’t know if it’s worth my two pennies worth but once you’re settled in Devon is it worth the GP referring you back a neuro. I only say this because referral times vary round the country and if you run into a problem it could be anywhere between a month and 6 months some people have quoted for a first appointment.

Good luck with your Devon move - I hope it goes well :slight_smile:

Reemz

X

Waa haa haaa! Fluffmeister!!! Yes that thread was a laugh & a half!! Also the one about the names for different symptoms!! xxx

Hey Reemz how are things with you??? xxxxx

I have been quiet - only popping on for a catch up now & again - as my symptoms have been quiet since I started the baclofen & neurontin a few months back I think I’ve been burying my head in the sand and pretending it was all a bad dream!

Unfortunately the last few weeks my symptoms have returned with a vengeance - I’m hoping it won’t last 4 months this time!!

I’m so scared and in denial I’m even convincing myself that Lloyd’s Pharmacy have given me fake meds because it’s happened so suddenly!!

Anyway as an ‘Oldie’ (1 year, 25 weeks and 5 days according to my profile!!) I do feel a bit guilty for not being more proactive so I’m setting some time aside to help a bit more x gutted Karen is off but hope she has a lovely time away from it all - she so bloomin deserves it!

Have you used the new facility where you can go back to all the posts & comments you have made? I read some of mine last night and it was a bit freaky to see what a dark, isolated & scary place I was in when I first came on here looking for help!!!

Eww! Still need the support but I never ever ever want to go back there again eh!!! xxxxxxjenxxxxx

Eww! Just looked again and it’s now actually 1 year 26 weeks 28 min !! xxx

hi everyone… thanks for the re union posts I am in devon now…it was worth it…love it here the sea air is refreshing… people have been very welcoming and friendly…which has helped allot. services are good and gp is brilliant…my new gp has refered me to a neuro for a review and fresh pair of eyes…his idea. it mine…lol eyes still. it great…blurred vision at distance …worse when tired and after my workout…it’s in. oth eyes but worst in left which is the one I had ON/ optic neuropathy in 18 months ago. driving is now a remote possibility…re blurred vision…unless this goes well I can’t even begin to re apply for my licence…and even then I have to be able to read a number plate at 20m …and I would have to latch one eye to drive…then there’s the arm weakness and leg weakness…so no doubt DVLA would want to asses me for an adapted control car…it’s been so long since being behind the wheel…I honestly don’t know if I could drive an automatic now…or now driving with one eye may be…plus there’s safely issue for me and other road users… am seeing an eye neuro in nov re wobbly vision etc… been working out hard …still muscle tremor and fatigue…but every day I push myself on this…because I have to…I need to fight this …whatever it is…unclassified neuro condition…!!! it’s not ME/cfs…it’s not many things…lol thanks re all your posts re the care. I experienced etc…alas it’s not uncommon but here they have a r u ok hospital policy for inpatients hourly check by qualified staff…so it’s reassuring should I ever need to be in hospital again they have it sorted here… em