still no diagnosis my health is deterorating rapidly past 2 month been awful

im losing all faith in my doctors few days ago the receptionists phoned me and told me to stop mithering them and i havent even mithered them that much. what concerns me is there lack of support or concern im getting from them. Yes they have done mri last year yes they even did mri beggining of janurary but my symptoms continue to get worse my vision has gone really bad this month and im seing bits of brown floating bits when i move my eyes i devleoped pain in my spine in one week top to bottom this si very concerning i feel like someone is pushing my head or neck down . i asked them for a second opinion on neurologists and because i rushed it with them it seems they have forgotton or dont want to give me one. the first neurologist i had this year or last year did not listen to me one bit i had a list of things i wanted to say to him such as vision problems boewels pain spine and cannot swallow propely. he assumed it was my child hood then continued to shine light in my eye and test my reflexes. he noticed ym right leg wasent kicking out propely so he ordered a spine mri which i had jan brain and spine mri were apprently clearr. But im learning as i go on about smothering ms or maybe nto sm related but the pain is everyday now im getting nowjhere with the doctors its liek they have WRITTEN ME OFF IM FURSTRATED , i do try to keep calm when i have attacks like i did in feb when my WHOLE LEFT LEG GAVE WAY and came back hour later went to a and e in uk blackburn and told me it might be a bad back?? LOL i wouldent go hospital for bad back. then few weeks later severe fever and severe headache lasting 16 hours or so i stayed in bed and that slowly went away but im noticing neurological problems i cant think qanymore memory is so bad im always forgetting kettle and keys and stuff my lower back is killing 24 7. my vision and behind eyes feel swollen i dont know what to do i struggle now to even get any sleep without sleeping tablets it is horrible IM SO DESPERATE i have had to book a rpivate neurologist for the 28th this month and im hoping it will be ok THIS IS MY LAST HOPE BEFORE noone will help me i get the impressio ndoctors have HAD ENOUGH OF ME or there putting it down like im some hypercondriac? i never go doctors unless urgent as isay 28th is my last chance saloon i dont know what im hoping for maybe a lumbar puncture? which ive never had i dont even have the money to pay for it thatys hjow desperae i am i am going to ask about that though i have lsot all hope these pains in my head feel strange and numbness fo handfs legs lower back kills all the time now since my leg gave way . why did i have this fever?? i have never in 4 5 years had a fever and headache like that. does anyone have any opinions on what i should do i feel hopeless I REALLY AM TRYING TO DO MY BEST TO GET SOME DIAGNOSES OR AT LEAST answers to what is happening to me im SO TERRIFIED I DONT WANT TO BE DISABLED AT 37

P.S I DO EXCERSIE EEVRY DAY NOW and i am also looking into reserch but trying not to overwork my mind i dont want to exaserbate these symptoms i already suffer from anxiety have done all my life but ihave learnt to keep calm during attacks and im learnign every day

p.s i did used to smoke which iregret doing and now i have stopped completly because of all this i wish i stopped sooner i guess ai thought smoking was helping me keep calm i bought some chewing gum strong onesi feel i have to change my life. i malso noticing ms in this world is increasing far too much i am researching into other things this might be but at same time trying not to worr ybut these pains in my head strange its feels like my brain is swelling or pressure i feel so scared though and hopeless… the swalloing has me worried and the pain in both sides of chest which for years ithought was a heart problem or lungs but xray say not . even had cardiac test which i couldent finish because i was so exhausted i dont know whats going on here i have all symptoms of MS but could be symptoms of something else?? i have had MANYT MANY BLOOD TESTS DONE and a couple of MRIS LAST YEAR AND END

THING I WORRY ABOUT THE MOST is that my symptoms feel like there not going away atall and iworry 28th will be too late few years ago i only had some chest pains and weakness in legs now there is so many symptoms i cannoty list the mall i worry incase 28th is too late or if the ydo not listen to me its game over i probbaly have a bad report on my medical file because of previous neurologist who did not listen to has apparently slated me on the report this has not helped anything and could be reason why noone wants to help in the uk having a second opinion is suppose to be human rights? IT SEEMS UK IS heading in a different direction and it terrifies me i will keep hopeful for the 28th and thats even if i can afford the treatment which i doubt. will my brown floaters in vision ever go away? i dont want to go blind or lose any limbs it terrifies me as i always like to be independent. are floaters common with ms? i see like dark spot centre vision it seems both eyes are effected now before it was one i also see slight cobwebs i dont know whether to go hospital when i do they dont seem to want to help i am waiting for specsavers but woudl rather see optomologists i dont know how it works i als oseen optomologists 2 year ago where they said ihave inflamed tear duct vision fine but seems to be getting worse will the blind spots or cobwebs go away im concerned

sorry for all the posts . the final thing i will add is that i suffer from hemochromotosis to which is the opposite to anemia i do have that under control though . i dont think having this has been well studied. new symptoms ihave is swollen lymth node under neck which i have never had bvefore for many years why is this swollen is this an ms symptom or something else its like something new is happening to me everyweek is dam scary

Hi, to say that you’re going through a lot is a severe understatement. Definitely go to the private neurologist. Maybe writing things down can help you communicate more effectively to them. I’m also undiagnosed and am also being shrugged off as just being crazy/ mentally unstable because I have a history of depression and anxiety. I feel confident that I’ve had ms since I was 16 and the depression/anxiety are just symptoms of MS. I hope you get diagnosed and find the relief you need.

thanks for reply i hope you do to this neurologist is my last chance ihope hes good because hes 25 miles away i dont drive and doctors havre have up on me so yes i will write stuff down i hope idont give him too much

1 Like

doctors wont even reply to me anymore so sick of it mine all stareted with feeling of something crawling on skin and dim vision i think ive had for 5 years im 37 now im just worried about the blind spots and curtain i nmy eyes will this go away? DO YO UKNOW

1 Like

It could be optic neuritis. Do your best to remain calm. I know its very difficult but emotional stress exacerbates symptoms. I have ON in my right eye and it has gotten better over time.

yesterdya i went specsavers who say theres no sign of optic neuritisd or any damage whatsoever this has happened now 3 years yet my vision i see brown spots and cobwebs i really dont know what to do anymore im stuck i dont want to lose vision the health system here in Uk is SHOCKINGLY BAD

I always do now noone knows what is wrong i have to wait 9 days now for neurologists by then its probbaly too late to get vision back

i had to buy my own dexamethasone tocontorl these symptoms and if idident i would be worse off right now they have helped mea lot 30 mg a day dexonealthough im coming off them tommorow tapering down

In the U.K. dexamethasone is prescription only drug.
Are you saying you obtained it without a prescription or that you had to pay for the prescription?
The NHS is under considerable stress at the moment, but treatment is highly regulated and evidence based.
This forum is also supportive of that.
MS is a very difficult disease to diagnose effectively as it can manifest itself in so many different ways. It can appear to be the diagnosis for almost anyone, but the treatments can be wrong for you if you are misdiagnosed.
I have more faith in the NHS professionals than DR GOOGLE.
My approach is to marshal the evidence and go forward with an open mind.
We only come at this once and they meet it repeatedly every day.

i dont do research on google. and i have tried to put my faith in the NHS FOR THE LAST 3 YEARS all i have had from them from my experience is nothing . im happy they managed to do mri scans and blood tests ect but nothing else has happened you cannot diagnosed or not diagnose based on mri scans alone and they should know this . YES THEY HAVE BEEN BUSY SO HAS EVBERYONE ELSE

Scientific papers even state this. never to diagnosed or rule out based on mri bloods alone. feels like to me they are skipping checks based on what covid?. COVID IS NOT THE ONYL ILLNESS I NTHIS WORLD , infatc there are far more worse illnesses going on and cancers not being diagnosed because of this farse. my vision was getting worse everyday i asked my doctors for help, they dont want to know its like they have had enough so sometimes we have to take action we cannot put our lives in doctors hands if they cannot diagnose anyway, for now i shall await my neuroloogy appoitment and see what happens from there. ONE THING ICAN SAY is that steroids have helped me get through the weekend, yes i can still feel like someone is plucking inside my chest ym spine hurts and my vision still has dots and cobwebs but i feel they have helped a little bit during the weekend who knows maybe i am in danger or maybe not. im tired of looking for answers. i excercise everyday and go out everyday and i try not to worry you may have had great experience with nhs. me onother hand have had a lot of bad experiences with some of them. i know they work hard and help peopel thats great theres a lot of good people and bad but for me i have had the worse experience in my last 2 years ever, as i say i shall await my neurology appoitment and hope for the best. i aint putting faith in drugs either i just have to keep batting on and see what happens.

yes they under stress i know so is everyone else like the cancer patients being written off.

i know what is prescription only. but ask yourself is it any wonder people look for answers if they cannot get any help from anyone? my doctors do not want to talk to me anymore and all i asked them for was a second opinion on a neurologists which they said icould have. it seems im not getting second opinion … why? because the first neurologists i had wirtten something terrible on my report and i dont know what he put but i do know for a fact he is has put something bad in that report because the receptionsist who has access told me. In UK if your health record has bad things on it there is no way to restartit its like having a bad cv BUT WORSE. i dont know what illness im going through all i wanted was a second opinion which should be a kind of human right in UK? it seems because of covid laws are going out of the window people are forgetting about small things that we need. anyway i shall pay for a neurologist because i have no choice now i probably wont have enough to cover the costs but i just want t oknwo what is going on is all i will keep hopeful