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Passed from pillar to post and no one seems to want to help?!?!?

Okay so I’ve been here for eighteen months plus in limbo land and am on my third period of struggling with my health. Most definitely the worst. Saw a new neuro last month as mine had retired and it was an atrocious first appointment. Wouldn’t let me speak, kept cutting me off and then just referred me for MRI without letting me tell him everything that had happened or what symptoms I had. Mri scan done and report back with neuro and told a letter was coming last week.

One very bad end of week and weekend symptom wise and I ring the neuro’s secretary to ask if I could pass the new symptoms on to the neuro and ask for medication to help and was outright refused. Told me to speak to my gp. I asked how could that be done as id not got my results letter so they wouldn’t have it yet either. Told they get passed over electronically. I asked if the letter contained any suggestions for medication as my gp won’t prescribe without neuro’s say so. She wouldnt confirm but promised to check with neuro and ring me back

spoke to doctors in the mean time and no sign of anything on my records but they’ll get a doctor to check and ring me back

well 24 hours later and no call back from either. Struggling, walkings getting worse and no one seems to want to help!!. At the end of my tether but really don’t know where to go from here with no support from my doc/neuro!!

any suggestions? :’(

I’m so sorry your having to go through this with little help I also am in a similar situation to yourself and my only advice is don’t get fobbed off by them we no our own body’s and what we are experiencing and the health professionals are supposed to be there to help us ,it’s awful that we are made to feel that we have to fight so hard for them to listen to us

keep strong and hope u get some help very soon

xx

If you don’t hear anything soon, try contacting the Patient Advisory Liason Service (PALS). Sorry to hear you’re having a rough time of it. x

Reiki

just submitted it to PALS now. Complaint letter of nearly three weeks ago received by neuro but ‘sometimes they just read letters and file them’.

Lets see what happens now :frowning:

Unbelievable. P** & @*()&$#@&. Will pm you later. C

Didn’t allow myself to be fobbed off. Complaint letter sent two weeks ago, followed by another yesterday after being told the doctor “doesn’t always answer letters and they just get filed”.

Suddenly receive a call from the neuro who continues talking over me and not listening for a while until i stop him and tell him he’s rude and unprofessional as he doesn’t listen to his patients.

“what do you want me to do?” he asks. “help me find out what is wrong with me” i answer

I tell him that i’m a normal man who’s illness is affecting both work life and home life and i’m at the end of my tether and all of a sudden he decides i can’t wait til april to see him next as planned and am now being referred to a specialist in leeds!!.

SOOOO Cody keep fighting. here’s proof that fighting the good fight does sometimes work. Fingers crossed the referral doesnt take six months now!!! :wink:

I’m so pleased for you hope you get some answers soon :slight_smile:

ive spent the last 2 days in hospital and had another brain scan yesterday I’m due to go back to the hospital today for results but im gonna def take a leaf from your book and be more pro activ in getting someone to listen to me from now on

keep us updated as to how you get on

Xx

I will do. Hope it all goes well with your results. Keep us posted won’t ya? :slight_smile:

mick

Hello - im new to this site but I can already tell that Im not the only one getting the run around !! I had ADEM over a year ago but have had symptoms get better and then come back worse for over a year. My neuro said he won’t diagnose MS because Im young and there’s not enough evidence to support the diagnosis ( im not young Im 47 yrs old !!! ) Neurologists seem reluctant to make the MS diagnosis in many cases. Why

Ive been in limbo for over a year. Ive got a dropped foot, facial muscle weakness, pins and needles in my right leg and arm. Ive also got vision problems. I wake up at night unable to roll over. The neurologist said there was a lesion on my brain scan but said I must have moved in the scanner !!! I had shingles that progressed into ADEM a year ago and since then my symptoms have been up and down. Any suggestios?

Peg well I’m stuffed then cos I’m only 37!!!

its hard but just keep plugging away at the doctors. If you let them they will sometimes fob you off. My brother was dx’d with RRMS when he was around 30 so anything is possible!

hugs and keep fighting the good fight :slight_smile:

Well results came back as no new change from my last Mri 2 mths ago and was sent on my way with the only advice to up my meds !!

I can’t believe these so called professionals !! How come some people get diagnosed quickly ( usually men?) and others are left in limbo for years. There seems to be no care at all. My GP has been pretty good and I asked him if he got fed up of referring people to consultants only to have the same person return with the same symptoms. He said GP’s have large shoulders !!! I was supposed to have physiotherapy for my dropped foot but despite a letter from my GP, it has been seven months with no news. I thought an early diagnosis was important in MS?

Guys I hope you get the treatment you deserve soon xxx hugs

Cody that’s horrendous!!.

How can these people not see how poor a service that they give us.

Big mahoosive hug and keep your chin up. Don’t stop fighting it and make sure they don’t fob you off

Peg, I honestly think it’s only because too few people complain about the situation and just accept that they’re in limbo and assume that there is nothing that they can do. Every neuro I’ve seen have all taken the ‘let’s wait and see’ approach and in sure the latest guy would have if I’d not have complained and mentioned how poor his attitude was (and copied PALS in too!!)

thank god for GP’s. The last three I’ve had have been amazing and supported me fully.

Mick

When I left hospital last year I made several complaints and got to see the neurologist again ( i would have been discharged with no follow up treatment ) its seems that most of us are given the ’ wait and see’ approach which isn’t exactly reassuring. I hope Cody and Mick that you get what you deserve from treatment. Do you both have medications for anything? Have you had nerve conduction tests of any kind? Do you have physiotherapy? Ive got meds for vertigo but nothing more and a couple of optician appointments ( ive been seeing various optitians and nobody can pin point the reason for my double vision and strabismus. My vision was perfect a year ago !!! Anyway Im sending you both hugsxx btw Im from Birmingham UK

Peg.

I hope so too!!. I’ve asked for help because my symptoms have been worse and are getting worse at the moment but my neurologist is rubbish. I have asked for help, in the letter of complaint because his secretary wouldn’t pass on information about them getting worse and wouldn’t ask him to consider meds.

No other tests done other than mri three times and blood tests. Asked him what other tests would he recommened but again no response and am kind of glad I’ve been referred to a specialist away from him as he makes my blood boil after only one appointment and one phone call!!

I’ve had my eyes tested earlier this year but they seem fine. Dvla paid for a vision field test and my eyesight is really good although I feel at times that someone’s shoved a finger behind my eyes and is pushing them outwards :confused:

heres hoping the specialist can at least give me some more tests and I’ll see what answers I get to the complaints I put on about the neuro

a hopefully mick from huddersfield way :slight_smile:

That’s good news, Mick! I hope that you get some answers soon. I’ve only had one MRI - my second neuro showed it to me and argued against the use of another, but is sending me for a Visual Evoked Potentials test. My right eye feels like it’s sinking back into my head, not being pushed out. So…I wasn’t told definitely that it isn’t MS but am being strongly encouraged not to focus on the ‘why’ behind the symptoms and he is looking to treat me with some medication that I’m already unhappy about (due to scary side effects). Peg, I’ve had vision changes from previously perfect eyesight. Oh, and I’m a Lincolnshire lass :slight_smile:

Good luck with the specialist Mick. I had a second opinion but it was at the same hospital and the room next door to the previous neuro. His examination was solely to do knee jerk reflex and watch me walk. He didnt look at my MRI scans or blood tests ( had a previous positive for Myasthenia Gravis Acetylcholine antibodies) after some pressure from me, agreed to second blood test for antiodies - it came back negative. I was also told to stop looking for the cause or reason to my symptoms !!! Since I started of with ADEM ( acute Demyeling Encephalitus ) it makes sense that I am continuing to have some kind of myelitus.

Its interesting to hear yours and Rekiblossoms issues with your eyes. Ive had continued blurred vision and double vision and definite weakness of right eye muscles ( kinda points to a myelitis or dystrophy/ palsy ) but they keep looking in the back of my eyes but doing nothing but send me to different optitians/ opthamologists. I saw a neuro opthamologist who was very cold and uncaring. She said it was a convergence ( another name for double vision ) wow no news there then !!! Geez Im so mad with the hospital treatment Im getting right now. From pillar to post !! Mick, Cody and Reikiblossom I can’t see a diagnosis happening any time soon. One neurologist tried to tell me to get councelling and I may have a Conversion Disorder !!! I was so mad. I saw a psychologist who said I was completely normal and wrote to tell him !!!

Sounds like you’ve been through hell!

no I don’t expect a fast diagnosis either. Unless this new doc pull something special out of the bag. My main worry is that I’m restricted duties at work but can’t see them paying me full pay for as long as it might take to be diagnosed. So eArly retirement out of the job may be on the cards. Only just about to turn 38!!! :frowning:

Hello stressed littlepuddycat !! Hows things progressing? Its been 16 months and Im just about freaked out to the max. Im so stiff and clumsy right now and the old body is hating the cold. Been sent a hospital appointment for an EEG !! Thought I was being referred for an EMG !!! Grrrrr can’t see that EEG will show much !!!