just been diagnosed rrms

Hiya everyone,

Found out today for definate that I have rrms,after 7 years of uncertaintity,

seven years ago doctors thought that I had a stroke,to cut a long story short I was told that they were 99% sure that it was ms,I had all the tests done and only my LB came back abnormal,was told that I needed twopositive tests results for it to be on paper confirmed as ms,

They gave me medication to treat symptoms ie baclofen etc,over the years other symptoms appeared which i reported to my doctor,3 years ago i had another mri scan done and was told it was normal and that it was infact ME that i had which was a relief as there was hope there that one day i would make a full recovery,

Anyway since then my family docters had changed,been seeing him quite often over the past few weeks with new symptoms ie bladder and bowel,went to see him tonight to see if it was related to ME to be told and shown my records and there in black and white a lettter from my Neuro 3 years earlier stating that i have rrms,

To say I was shocked and angry is an understatment,i feel numb,why didnt the neuro tell me? has anyone else experienced this?

My doctor bless him was very nice,he was shocked that i was still believing it was ME,my emotions are all over the place,sorry for ranting on here but i dont know where else to go,

sue x

Sue, That is awful! Not just that you have RRMS - which is pretty pants, but NOT the end of the world, for most of us. But that you suspected as much all along, but had been reassured it wasn’t. Do you think it’s been deliberately concealed from you, or was it just a shocking blunder? It seems as if he may have got your notes mixed up with another patient, or something, so that what you were told at your neuro appointment didn’t agree with the picture as presented to your G.P. But your previous G.P. must have been at fault too, for never discussing the contents of the letter with you. The only possible justification I can think of for doing this deliberately is if they thought the news posed a risk to your safety and mental health. What did your current doctor, who is better, say, or think you should do? I think it’s important to seek urgent clarification from the neuro (if still practising), as if you and your doctor have been told completely different things, how can you, even now, be certain which was correct, and which the mistake? I know there was a time, particularly before the advent of modern treatments, when it might not always have been considered in the patient’s best interests to know. But as this occurred as recently as three years ago, I’m sure ethics can’t have been a lot different from today - which would mean you should have been told - unless there was some very grave overriding concern about you. At the very least, I think you need to make a formal complaint, and seek an explanation. In your place, I might very well be tempted to seek legal advice, too. But you would need to show you had “lost” something as a result of the misinformation. One possible thing you might have “lost” is the opportunity for early treatment. But as not everybody qualifies anyway, it’s not certain you would have been eligible. Even if you don’t stand to gain compensation, I reckon it’s worth making a rumpus, even if only to prevent it happening to anybody else. If nobody blows the whistle he/she might still be getting it wrong with other patients, to this day. Tina x

Honestly sitting here with my mouth agape. HOW TERRIBLE!!! What an incredible blunder, and what a ridiculous way for you to find out that you do indeed have MS.

I agree with Tina - I hope you make a formal complaint. All that uncertainty and worry over all those years - it’s diabolical. At the very least you deserve an official apology.

Big priority though - get yourself a referral to a top notch MS specialist and get some proper help for those symptoms and maybe for your MS(!) itself.

(((((hugs))))) for the shock, and the carppy news.

Karen x

Hi Sue

Words fail me at the shoddy experience you’ve had from the medical profession.

I don’t think that it’s just the neuro that’s in the wrong here though - I think your original GP has a lot to answer for too. There’s absolutely no getting away from the fact that he would have been informed of everything by your neuro. Thank goodness you now have a decent doctor who’s picked up on the error.

I agree with both Tina & Karen that you should look into logging an official complaint - that said, I think your number one priority is you! To make sure that your new GP refers you to an ms consultant neurologist (preferably not the same neurologist as before) for some long overdue treatment, help and support. In my opinion your case should now be treated as a priority to get to the heart of the matter.

It doesn’t feel right for me to say ‘welcome to the site’ simply because of the appalling way that you’ve found out that you have rrms. However you will find that everyone here offers a great source of support and help when you need it.

Good luck Sue - get on the blower to your new GP and have him start the ball rolling.

Debbie xx

Hi Sue I cannot believe that the GP received a letter that stated that you had MS and did not inform you and that it was 3 years ago! Also, why didn’t the Neuro follow up with an appointment for a treatment plan or a check-up to see how or if you were progressing. What a shambles! You must be spitting feathers! As everyone else says though, you must get some decent help/ treatment from a specialist. Hopefully they’ll be able to improve how you feel with relevant meds etc. Thinking of you and wishing you all the best, Teresa xx

Hi Sue, must admit I suspected my diagnosis and didn’t find out until I had chased up my own OPD Appointment. The Consultant apologised profusley at the missing letter informing me I had RRMS. That was only possible because I work in the right field (NHS). As soon as that was done, now on the pathways/clinics/etc.

I can imagine in your position it must be frustrating and could at least be as Rubina says you are due “some long overdue treatment, help and support”

Best Wishes, VinceA

Hiya Guys,

Thak you for your replies, your right in what you all say about making a complaint,i shouldnt let it go,ive got to go and see gp next week so il talk to him,im glad in a way that i know now but i still feel numb,kinda feels not real if you know what i mean,i feel lost,how long was it for you guys to come to terms with it?

sue x

Sue, this is shocking. I’ve often wondered what happens when GP’s are on holiday. Is the mail left until they come back or does someone else do it.

Have you been to your GP practice in the last three years? I know many Consultants now send copies of their letters to the GP and the patient. I really appreciate this and the situation you are in gives a good reason why all Consultants should do it.

This must have been a real shock.

Jacqui xx

I think how long it takes depends on a lot of different factors including the kind of people we are as well as the kind of MS we have and how active it is. My feelings about my MS vary with my MS. I came to terms with the actual diagnosis pretty quickly I think - but I’ve always been that sort of person. When *** hits the fan, I’m the kind to read the manual to check if and how it should be cleaned, order a new fan if necessary, arrange for the installation or cleaning, oversee it and pay for it, put practices in place to ensure it doesn’t happen again and then move on to the next problem. I do have times when I get down - most notably when I started on Copaxone and during bad relapses, but I have always pulled through, mainly by remembering that things have gotten better before and that if they don’t, I will cope. There are loads of meds, equipment, people, treatments to help me. It’s what the counsellor I saw in the very beginning helped me realise, and it has proven to be completely true. MS sucks, but it is not the end of the world. Life goes on. And it’s pretty good on the whole!

Give yourself time. You’ll be OK.

Karen x