left in limbo

New diagnosis and before diagnosis
1

sorry for this long long story but i’m at my wits end…at a young age (about 18) i had a trapped nerve,i couldnt walk,lift leg or anything for over 2 year,i had 3 epidurals,spinal blocks,had a cast pot from my waist up to my neck,i also spent months in hospital on traction and complete bedrest at different times,i was told it was a trapped nerve(sciatica).i had to use a wheelchair and was bedridden most the time,eventually recovered after 2/3year but over the next 20yr i would suffer from a really bad back which would occur for no reason and would have me bed ridden for weeks on end,

this would happen every couple of years then every couple of month,in the end i lost my job due bad time keeping…then 7 year ago i also started getting really bad nerve pain in my foot,it was agony like someone was ripping the veins out my big toe,it was so bad i couldnt stand even the bed sheets on my toe,i was having night sweats were i would have to get up and wash the bedding 2 or 3 times a night i was that soaked(normally i’m not a sweaty person)i was going the toilet 27 times a night for wee wee’s,i went the docs,they sent me for an ultrasound on my foot,it eventually

i was diagnosed with reynauds disease,over the next 5 year my toe was just numb and i could hardly walk on my feet,my feet felt like they were on fire,i am attending the pain clinic and they sent me for yet another epidural,this epidural did stop the the numbness in my toe but the pain came back with a vengence and has never stopped,then as if i havent got enough problems i started getting really bad neck pain,so bad that i cant even move my neck or turn my head,this has been happing to me constant over the last few year,sorry for the such a long story but also over the last 7 year since my foot start i have been going numb along my side of my chest,which causes me stress,my feet would feel like i’m walking on water,all squidgy or they would feel like i was walking on crushed glass,for years the docs have fobbed me off telling me its anxiety,when i knew it wasnt because it was happening to me,things got so bad at xmas 2013,

i couldnt walk on my feet due to the crushing glass,i started getting pins and needles in my arms and hands,tingling feelings like electricity flowing through my top half of body,it also felt like i had a mobile fone vibrating in my pocket all the time,went docs again and i was finally sent me for a brain scan as he suspected parkinsons disease,the scan came back 2 month a go and i was told i have several lesions/cysts i dont know what they are and spotting on my brain,thats all i know because thats all i have been told,i have a neuro appointment in may 2014,it doesnt stop there only 3 weeks ago i started getting horrible eyeball pain,that hurt so Bad.,went bad the docs they said a trapped nerve,but now i have gone blind on a couple of times,not a dark blind,like a grey cloud and it only lasts a couple of minutes,i get nerve pain allover my face and feels like it goes numb,when i close my eyes 1 still feels like its left open,

i am getting pain all over by body,hands,knuckles even in my legs and struggling with everyday things,what is wrong with me and please dont say stress and get more stress and anxiety through getting told this all these years,please has anyone else had these symtoms,whats wrong with my eye and why am i getting nerve in my hhands and feet so bad i can hardly walk

2

Hi Mick,

I’m sorry to say nobody on a forum can really answer your questions. Obviously, your MRI did find something, but I’m afraid you will have to wait for the neuro appointment, for further clarification of what.

A condition called optic neuritis is fairly common with MS, and can cause severe eye pain, and varying degrees of impaired vision. I can’t see how this could possibly be due to “a trapped nerve”. Inside your head has no moving parts: which nerve would get “trapped” and how?

Does your GP know you have actually lost your sight at times? If not, this is important, and they must be told! They might be able to bring your neuro appointment forward.

Alternatively, you could start at a normal optician’s, and they should be able to contact your doctor about anything abnormal they find, and say if an urgent hospital referral is needed.

Hope this helps,

Tina

3

thanks for reply anitra,when i went the doctors i was having the pain in my eyes,i told her that it was agony and that i was getting pains allover my face,and when i closed my eyes 1 felt still open,i hadnt actually gone blind,that came to 2 days after seeing the doc,the doctor fobbed me off saying ive got no new symptoms,looked in my eyes and said she couldnt see anything and that she didnt really know and maybe i should see a optition,no new symptons she says,that was a new symptom and the pain in my face was new,its the doctors who help towards my anxiety,years ive suffered with nerve pain,i was reading maybe its a ophthalmologist i need to see,i dont think an optician can help me,i dont want to go back the doctors,i already feel like a hypochondriac with so many problems

4

thanks for reply anitra,when i went the doctors i was having the pain in my eyes,i told her that it was agony and that i was getting pains allover my face,and when i closed my eyes 1 felt still open,i hadnt actually gone blind,that came to 2 days after seeing the doc,the doctor fobbed me off saying ive got no new symptoms,looked in my eyes and said she couldnt see anything and that she didnt really know and maybe i should see a optition,no new symptons she says,that was a new symptom and the pain in my face was new,its the doctors who help towards my anxiety,years ive suffered with nerve pain,i was reading maybe its a ophthalmologist i need to see,i dont think an optician can help me,i dont want to go back the doctors,i already feel like a hypochondriac with so many problems

5

Hi again Mick,

Going blind is serious, and needs to be reported! You can’t just not go back to the doctor’s. Yes, you probably do need an opthalmologist, but first you need to see someone, to get a referral. As far as I know, you can’t just show up (although I believe some of the big eye hospitals, if you happen to be near one, do have an equivalent of A&E, where you can just turn up).

Either your GP or an ordinary optician would be a stepping-stone to seeing a specialist.

True, if it’s MS or something similar, there might not be much they can do - a course of steroids is the most common treatment for an acute attack, but if your vision has already returned by itself, they probably wouldn’t bother with this. However, your sight is too precious to gamble with. Even if they couldn’t or wouldn’t treat it, you can’t just assume this, in case it’s something that should have been treated immediately.

May I suggest that if you don’t feel comfortable going to your GP, even to report something as serious as blindness, you need to switch GPs? Anxiety can cause a lot of physical problems (I’m a long-term sufferer, as well as having MS). But I never heard of anyone literally going blind from anxiety, so I can’t see how this can possibly be a case of hypochondria.

If you can’t face going to the surgery in person, arrange a telephone appointment - most of them do that now - explain that since you last visited symptoms have got worse, including impaired vision. Ask if they can do anything to bring your neuro appointment forward. OR, go to an optician, as she suggested.

Tina

6

i phoned nhs 111,on the phone for 20 minutes(kept myself calm all the way through it,i explained the symptoms and asked me questions and said they would phone an ambulance out to me,i didnt want the ambulance to come out,so they said i should have a emergancy phone appointment with my own doctor,phoned doc,they said they would send doc out as i could hardly walk to make the surgary,anyway 1 hour passes and different doc phones asking what the problem is and i had to go the surgary 1st thing in the morning and he’ll explain all about my numbness,i didnt go docs the next morning because i didnt want them telling me its anxiety and to be left feeling like a hypochondriac like i already do,my eye is a bit better today,still getting painful nerve pain in eyeball but not loosing vision,me feet are terrible,cant walk on them,feels like i’m standing on crushed clash and now i’m having problems with my hands and fingers and toes,so much its interfering with everyday simple things,i will be changing docs as soon as ive been diagnosed because what evers wrong with me,ive had a long time and only now are they getting to the bottom of it,thanks for the advice

7

Hi Mick,

Do you live anywhere near an eye hospital because if you do I would suggest you go to the A&E there about your sight. I lost vision in one eye last October and went to an optician initially but was referred to the eye hospital, this referral took a month and the eye doctor who saw me told me to go straight to the eye A&E if it happened again. Several tests, including an MRI (showing more than 5 lesions) and a different acute symptom later (complete numbness in sole of foot) and I have recently been diagnosed with MS. Not that any of this has helped with the other less acute symptoms but at least now I know my problem even if it can’t be solved.

8

hi larks and anitra,the a&e in hartlepool as shut down and moved to a different town,so its a bit hard for me getting there,i only lived 2mins away before it moved aswell,my eye doesnt seem too bad this morning,still feels abit weird and pain doesnt seem as bad,the pains in my foot,like yourself larks my foot goes numb and when its not numb it feels like its on fire,my hands and fingers are abit sore,i’m getting scared and jumpy of my own body,dont know whats going to happen to me next,sorry if i sound like a whinger but i’m not really,i just soldier on through it all (when i can)some days i struggle so bad

9

Last October, I noticed that the vision in my left eye was ‘cloudy’. It was like the after-image from looking at a bright light for too long. After a weekend of not being able to see properly, I called 111. I spoke to an ophthalmologist at a local hospital and he told me it was floaters. As someone who is very short sighted, I am prone to floaters and knew in my gut that this wasn’t the problem.

I persisted, and long story short, after being dismissed by one Ophtho and then another, I decided to take myself to my optician. He diagnosed ‘suspected’ optic neuritis and he then sent me, with a letter saying I needed urgent referral, back to my GP. I then (over a period of a couple of months) saw several ophthalmologists who all agreed on Optic Neuritis, saw a neuro and had a head and MRI showing several ‘suspicious’ lesions’.

I am ‘undiagnosed’ and may never go on to develop MS, although am back to neuro in a couple of weeks for some other symptoms. But my point is, when you know something is wrong, you know. I was incredulous at the number of healthcare professionals willing to dismiss me when I was telling them that I literally couldn’t really see out of one of my eyes. I couldn’t understand why anyone would think that wasn’t a serious issue.

Be persistent. Get back to the GP and explain in no uncertain terms that you CANNOT go on like this.

As has been said, your eye health is SO important. If you don’t feel comfortable talking to GP, go to an optician instead. They will quite often take walk-ins, especially during a weekday. Or call ahead and see if they can fit you in TODAY.

Do a colour blindness test online. If you have lost some of your colour vision in the affected eye, it can be a very strong indication that it is Optic Neuritis.

Good luck with everything and let us know how you get on

PG

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hi pandagal,thats the same symptons i get,the only way i can describe it “cloudy” and bright light felt like it was coming through,i have now developed some some of twitch in my eye now,i’m refusing to go back to my own doctors now,as soon as ive been diagnosed i will be tryin to find a new doctors surgary,this as gone on far too long with many new symptoms,everytime i go the docs i end up leaving distressed and anxious,as far as i’m concerned the things on my brain should have been found out a long long time ago instead of been getting fobbed off with anxiety all the time,i will be taking all the advice from all you members on this site and will make an opitions appointment for tomorrow(if i can get 1 that quick) ive been waiting since december for my neuro appointment,am sure i can wait 5 more weeks till my neuro appoitment…ps i forgot to mention,all my doctor says is "someone has seen my brainscan and its not life threatening,so thats what i get fobbed off with now

11

Hi again Mick

You may not be seeing eye to eye with your GP (not a pun, I promise!), and you certainly sound like they have let you down somewhat, but please don’t cut off all contact with the surgery. Maybe switch GPs within your practice, or change surgeries if at all possible.

Your GP should be your lifeline, as it were. Any results and findings from your Neuro appointment will be sent to you and to your GP, but the likelihood is that you won’t be able to make much sense of what they say without the GP’s guidance (lots of words I’d never heard of anyway!).

Diagnosis of MS, and many other ‘mimicking’ conditions can take a very long time. You will find this journey an awful lot harder if you cut out the GP as they are a central point in the whole process.

Neurologists are in high demand it seems and appointments can take a really long time to come through. I really hope you find a way to see another GP as unfortunately, this isn’t a journey you can do alone.

Best of luck, PG xx

12

everytime i go the gps i see a different doctor,not very often do u see the same doc twice,i will stick with the same doctor and if they try giving me a different doctors appointment i will refuse and tell them i want to see the same doctor(but then i would proberly have to wait a week,i have every single sympom of ms +many many more symtoms i dont mention because as ive already mentioned i feel like a hyperchondriac,1 doc origionally suspected parkinsons and another doctor has mentioned ms,personally i think i have periperhal neuropathy,i have read that some people ban have both ms & pn,i have done alot of googling over the last 4 year (i know i shouldnt) i dont think i have parkinsons and was glad to hear from 1 of my doctors that she didnt think it was.,i live on my own and dont have many friends because i hardly go out my flat ,over the last 4 year,ive become like a hermit due to all my ailments,so thankyou everyone replying,its nice to know there are people out there with the same problems and are only a internet message away…ps i have made an optitions appointment,not that i think they can tell me(asda’s optitions)

13

update,cancelled asda’s optitions appointment and phoned up a eye doctor and explained to them what was going on and theyve booked me in for an appointment later this afternoon

14

had optitions appointment and had eyes checked.my eye sight was perfect,i knew this would happen when i finally went to get them checked…i explained about the eye pain and vision loss,had the tests done and results came back all clear and i have healthy eyes,although i misssed a few hit on my field of vision but he said that was ok…even so i still ended up leaving with a pair of glasses i have to pick up next week

i asked the optermeterist why was i getting pain in my eye,even getting pain when he was doing the test and shining lights in my eyes,he explained my right eye seemed dry and that could be causing problems and said it could also me migraine

Now i’m feeling like i fraud again,1 doctor saying trapped nerve,another doctor saying she couldnt see any promlems and a optometerist saying i have healthy eyes,yet i still get contuine with pain…should i mention my eye pain to the neurologist when i have my 1st visit with him or am i just adding another problem to a long list of things

15

Hi, definitely mention the eye pain and any other problems you are having when you see your neurologist. I’ve just looked back again at your original post and see that your appt isn’t until May, maybe you should phone them and ask for a sooner date. You really sound like you need better care to be honest, I feel so lucky with the care I’ve had so far.

However, although new to all this I have already started to keep a daily diary of symptoms partly for myself but also to make sure I have all the facts to hand for the different people I see. It seems to me that MS is a very individual disorder and only we as patients can tell the professionals what is really going on and, with my befuddled brain the best way I can do that is to write it down.

Having done that for the last week since my diagnosis, I’ve realised today that I am actually feeling a lot better. I’m gonna keep this diary up as I think it is the best way for me to manage and know really how I am.