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review with neuro end dec..

Hey all… my new gp since moving has suggested I see a neuro for a review as it’s been over a year since I was in hospital …those of you who know me will recall…lol still unable to drive…blurred vision at distance…intermittent light sensitivity and abnormal eye movements…have persisted since jan 2012 off to see eye neuro end of this month…for a check up…have suspected glaucoma but it’s not causing these symptoms. interestingly…the prev eye neuro has back tracked and is saying optic neuritis is optic neuropathy…of which ON can be under…he’s saying MRI of brain scan in 2012 showed no inflammation and yet at the time he reviewed the scan himself and his collegue informed me there was a small spot on the left optic nerve that the radiologyst missed…very confusing…they can’t say what has caused the oscillopsia and nystagmus which came and went when I was admitted to hospital last year…my pupil in left eye is slower since the attack…although reacting normally to light…my vep tests last year were slow on both eyes and they said that was Normal…considering the on in one eye and lazy right eye since early childhood… my gp has told me re driving even if the blurred vision resolves I will need to be reasses re DVLA for the weakness in my arms…and my legs re automatic car and possibly an adapted one…so driving seems more and more out of reach…at the moment at least…18 months now…at present I am diagnosed with an un classified neurological condition with a small non organic functional element that the neuros could not quantify last yr. the neurospych I saw last year in hospital didn’t feel there was an issue re FND !! I have improved gradually and slowly but am left with some deficits …still have tremor on and off in right hand and arm when gripping or pulling with both hands on just one…weakness in left arm and shoukder…but I can now shrug both shoulders which I couldn’t last yr…blurred vision is worse after exercise or in strange places…ie signs etc…eye pain persists in left eye…on eye movement and there is still some weakness in eye muscles…my eye went lazy when I had ON …and it has improved but not back to normal …my sight is better but not back to what is was before the ON…colour fading has improved but not back to normal…my neck position. is much better but bringing my chin down to my chest sets of a tremors on the rhs of my neck and the musckes spasm… last few days not felt well…no temp…but flue like symptoms and tremor in right hand and arm worse I put a catheter in at night re my urine stoma…and inflating and deflating the balloon has been much harder last few days…re syringe…any sustained force required and this sets off the tremor…bit pants as I am right handed…lol I may of course have a virus??but not been in contact with people ?so am a bit baffled??feel so tired and my balance is off too even though I get about in a wheelchair…and I feel generally like I have been bit by a bus…lol any feed back on this would be much appreciated… I hope the review goes ok…slightly apprehensive …the dr I will be seeing is ms and Parkinson’s related…he won’t have my prev notes or anything…my gp feels a fresh pair of eyes and perspective would be good…I agree…I really don’t know if I have ms…and understand the drs don’t always have the answers…all other major neuro things were ruled out…last yr…and fibro / cfs was never in the equation either …blood test ruled out RA…etc…bacterial infection…my LP took 3 weeks to come back from lab and that was as an impatient…o bands were clear…as were the other samples …I am concerned re LP that the sample was stored properly…ie frozen after 7 days if not tested straight away…as this can cause a false result…if it is kept in fridge after 7 days …still I have no way of knowing these things…and am sure it was dealt with correctly…(external lab)…I just feel the nhs have made some serious cock ups with me over the years…and am a little suspicious…lol not sure what to say to the neuro…shall I just let him ask me questions…I have not made a diary fir some time…I don’t find it positive to dwell or focus on things but maybe outline to him the residual symptoms I still have ?. also would I benefit from neuro rehab re FND…there’s a place in london that does a 4 week residential but am reluctant to go …this was suggested by a neuro physio…in July…and as gp says I may not benefit from it,…I had 6 wk neuro rehab last year …and made some progress …enough to go home and had some help re care fir the 6 weeks and decided to get on with it myself after then,am pretty independant …and strong willed lol em

having problems posting the above. ? Em

Hello Scoobie. Its getting late and I’m just thinking about bed. Just thought I would reply to your message to bump it in the hope someone will answer it for you. All the best,

thanks blossom…how are you? have had problems posting a new thread and any replies to others I write have to be moderated before posting on here em x

Hello em. I’m doing ok ta…taking it one day at a time. You have to be moderated…been a naughty girl Lol I nearly always bump long post on, or avoid answering them because I have trouble now taking in a lot of information at once. I hope you get some help soon with your problems. I notice you mention your having a neuro apointment? I would write down how you’ve been feeling over the last few months or so…maybe give him a copy for your files. Is someone going with you? my husband goes with me. Once again I hope someone takes the time to read your post and offers better advice than I’m unable to give at the moment. Good luck em, Noreen

hi Norween thanks for your lovely reply…yes sorry for my rather long post…appreciate it’s allot yo read and digest! yes have neuro appt fir a review…as not been seen by anyone since leaving rehab this time lady yr and didn’t have a follow up with neuro at prev hospital before I moved to devon. I wasn’t aware I have been a bad girl on here…and wasn’t alerted by anyone on this…looks like my replies are not moderated now…so am safe!, lol thanks Hun …lots of luck needed! em

Sorry em! just noticed your thread…spend more time on everyday living. I hope your neuro appointment goes well. When I first came on here my messages used to take ages to post but much quicker now thankfully. Its frustrating if your trying to comfort someone. I can’t drive anymore, DVLA took my license off me. Due to side effects of meds…I knew I wasn’t safe, had already made the decision myself to stop. Do miss the independence it gave me though. I’m glad your not a bad girl…my mum and dad warned about getting in with bad sorts Lol Best of luck to you em, take care, Noreen

Hi Em,

I hope your Nuero appt goes well, I am missing driving too, still waiting to hear from DVLA for there decision at the mo,

takecare

Catherine xx