Hello

New diagnosis and before diagnosis
1

Hi all. I am 48 years old and waiting to see a neurologist. Let me tell you a little about whats been happening to me. Sorry in advance for this being a long first post :smiley:

8 weeks ago I had pain in my right eye, then five days later, my sight was blurry in about a third of my right eye. Went to A and E and got seen by an opthamologist. Was not given anything not even pain killers. Saw my GP and took a list of my symptoms (that I have had for the past couple of years) - balance problems (sideways steps), feeling so tired I want to cry, horrible back spasms that really do stop me in my tracks, I have the most horrendous feeling of being boiled alive when my internal temp seems to shoot up suddenly… about 40 times a day, forgetfulness to the point that I live by lists, and other stuff that I cant remember now :(. I handed my GP the list, she didnt even really look at it, just handed it back and told me it was a motley crue of symtoms and she thought I was had Fibromyalgia (dx with that a year ago). This is different, I just feel unwell all of the time. There is something wrong with me and I want to know what it is now. I was sent away with a flea in my ear and told to take antidepressants. I AM NOT DEPRESSED, I JUST DONT FEEL WELL!

Anyway, got app through for Opthamologist, who did lots of tests on my eyes, but didnt really say alot to be honest. Oh, he did say Optic Neuritis. Anyway, he then ordered an MRI scan and told me to come see him again in 6 weeks time. Last Thursday during the course of the afternoon, I was working on my PC and my eyesight went blurry in my left eye! I phoned the hosp to report this new symptom, and was told to come back to hosp (there is an urgent eye clinic there) after the MRI that was scheduled for Friday morn.

Had the scan fri morn. Went back to Urgent Eye Clinic and saw a different opthamologist, who asked me many many questions about my general health. Then he said that I was dx with ON in both eyes, as a result of the first eye test I had (three weeks ago). I wasnt ever told that it was in both eyes. I was so worried as I thought I was going blind as in the past 8 weeks my eye has deteriorated massively!

Anyway, opthamologist sat and actually spoke to me about everything that has been happening with me for about an hour! He was brilliant. He also said if was able to do the diagnosis of MS, he would have done it straight away as I was a clear case of MS. But, obviously because of hospital politics, he cant refer me to a Neuro, so I have to go to my GP tomo (with a letter he has written saying about an urgent referral and probable dx of MS).

Wow, this is nearly a book… sorry. But, my question is, how long does a dx take. Im going to ask GP for a sick note as I cant drive with my eyes so blurry, and I cant do my job (admin/bookkeeper) when I feel so poorly! So will I be able to claim benefits before a dx? Its just me and my daughter aged 17. Im going to go to CAB tomo (if I can!) so it will be a busy day for me. Any advice I would be grateful for. Im hoping to see a different GP than the one who totally dismissed me!

Thank you all… Paula x

2

Hello Paula,

Wow, poor you, once your gp has referred you to a neurologist and explained that you have already had a MRI and that you have ON in both eyes your appt’ shouldn’t be to long in coming. Having said that, if you don’t hear anything within a couple of weeks phone the neuro’s sec’ and see if you can gee the appt up. Just push and push for an early appt’. Also write out a list of your symptoms to show the neuro.

I wish you luck and do let us know how you get on.

Janet

3

Hi Paula, and welcome

I could happily strangle some GPs. Their knowledge and interest in neurology is generally apathetic at best and, as a result, so many people end up getting mucked about for far too long

How long it takes to get a diagnosis really depends on where you are in the UK (postcode lottery!). The fact that you’ve already had an MRI and you have confirmed bilateral optic neuritis (ON) should shorten the process, so with any luck it won’t be too long. If your GP stresses that you have active bilateral ON which is preventing you from working and doing everyday tasks, it might get you seen earlier too.

The CAB will be able to advise you about benefits. I hope you can work something out.

Let us know how you get on!

Karen x

4

Thank you both for your replies. Seen my GP this morning, and whilst he said it “certainly looks likely” I have MS, he wont refer me until the MRI results are back as I have a comparable MRI from a year ago (when I was getting headaches all the time, balance problems, forgetfulness etc) when he dx me with fibromyalgia. He didnt even want to give me a sick certificate (even though I pointed out that I have to drive 20 mins to work, and how am I expected to do that when I cannot see properly!!). Am really upset today… feel like sh*t and not being taken seriously by a doctor is NOT GOOD!! Oh, then I went to CAB and it was shut!!! Arghhhhhhhhhhhhh

So now I go back to GP in a weeks time to see if results are in… no painkillers (even though I asked). So frustrating.

Sorry for the rant

Paula x

5

I have had bilateral Optic Neuritis documented but nobody gives a s***, you are very lucky and hopefully you will get your diagnosis when you see the neuro.

6

Look, this isn’t one for today, because you have plenty on your plate as it is, but when the dust has settled it will perhaps be time to sack your GP and get yourself a good one. They do exist. Maybe that’s just a thought for you to keep in the back of your mind for now to help you deal in the meantime with any further unhelpfulness from that quarter.

Good luck with it all.

Alison

x

7

Thanks everyone. I have been onto the radiology dept to find out what happens now, and was told that because the dr didnt order the mri, he actually wont be getting a copy of the results yet! they go to opthamology first, then they send them to gp, so i have no chance of gp referring me next week!! and my next opthamology app is not until 21st june!

I am not beaten yet though, am getting onto the local PCT and complaining… I forgot to mention that my GP gave me back the letter from Opthamology which states " I would be grateful if you could refer her to a Neurologist as a matter of urgency. In light of her symptoms, probably diagnosis could be MS". And my GP didnt even read it through, and then handed it back to me!!! The Opthomologist last friday said I was to keep the next app I have with Optho as then if I havent been seen by a Neurologist, it could help speed things up… my next app is 21st June!

This is so frustrating. Seems like 2 doctors think I probably have MS, but noone is referring me to a Neurologist… any advice? x

8

Hello! So sorry to hear how frustrating your situation is. Maybe a letter to your MP will help? I’ve written to mine re. waiting times (18 weeks to get tests done). She’s written to CEO of the hospital. It may not make a difference but everything’s worth a try.xx

9

I completely agree with Alison - you need a new GP. It is ridiculous that he wouldn’t give you a sick note, never mind doing nothing about a referal or pain relief.

Does he seem to think that he can diagnose you himself (he can’t)? Why else would he wait for the new MRI? Is he going to refuse you a referral if it comes back negative? You should not being having to think of these things - a clear cut case of optic neuritis on top of your history and accompanied by a letter from a specialist stipulating that you need an urgent referral to a neuro, but he chooses to wait? WTF for??? Sounds like ego and/or budget control gone mad :frowning:

Hopefully the MRI results won’t take long. If the GP stalls, then insist on a referral to an MS specialist. (You can get a name from the “Near Me” function on here - look at the white boxes along the top of the page.) If he won’t do it, make a complaint to PALS. I’m sure that it is completely inappropriate for him not to refer a patient with ON to a neurologist.

And, as Alison suggested, when you feel up to it - find yourself a better GP!

Hang in there.

Karen x