Found out in passing conversation with GP

Hi lovely ppl…

I used this forum a few years ago when I first had some odd symptoms and initial tests…

For the last 4 years I have had a crazy journey of seeing 3 different neurologists, various tests and a huge list of very typical MS symptoms. I was initially told by one Neuro I had MS, then told by another I didn’t, then told I had a ‘working diagnosis’ but not an official one. When I saw the Neuro in July he told me that my recent eye problems were not related and stated that he would see me in 12 months & probably discharge me with CIS.

I went to my GP yesterday as my entire left side has gone numb and during my consultation, she asked when I had been diagnosed with MS… She looked shocked when I said “I haven’t” and told me that I definitely had… She went on to show me a letter from my Neuro, which clearly said at the top ‘Diagnosis: MS’!

This whole thing has been a complete farse and I feel angry that no one has actually sat me down & officially told me that a diagnosis has been made… Just wondered if this had been anyone elses experience??



Oh yes!

I`ve spent the last 16 years going between 16 neuros…some have said it is PPMS, some have said it isnt and others have said it is working dx of PPMS. 1 even brought a totally different dx into play!

But last year MS of any variety was finally (I think, but who really knows?) discounted.

After 4 MRIs, 2 LPs, 2 EMGs, a VEP and gallons of blood tests all came back normal, I am now labelled with;

Spastic Paraparesis/cause unknown.

Everyone who is unable to walk and has spasms, also has spastic paraparesis…be it caused by MS or the galloping dogrot virus!

Yes, youre right.....someone shouldve told you properly!

Fun, innit…not!


Thank you Poll…

OMG, 16 years! That’s like 4x my frustrating time waiting for answers! I think that if I were you the men in white coats would have had to tak me away before now! Real sorry to hear of your ordeal and I hope that you finally getting some support & treatment…



Hi Troski

I’ve had the opposite happen to me. My neuro told me I have MS and told me to tell the DVLA and any insurance companies as they need to know.

Four weeks later I recieve a letter from my neuro which was written to my doctor stating I have “likely” MS.

If you have any critical illness policies then you may have missed out with making a claim as you normally need to make a claim within 3 months.

I think most people will be able to relate to their situation as being a farse.

All the best.

Hi Can’t wait to see what neuro has to say when you go back and see him again, get a copy of the gp letter and ask him to explain what a farce. Not surprised you are angry Best wishes Noms

That’s awful! I have heard of stories like this from people who “found out” some years ago, but I think values and policies were different then, and it was sometimes thought kinder not to tell someone - especially in the era before treatments were available. But I thought all that went out with the ark! As for any insurance claim, I shouldn’t have thought you would be disadvantaged, as you can’t possibly have claimed before you knew, so the clock would have to run from the date you were informed, not from the date some neuro shoved it in his filing cabinet without telling you. IF the insurance company wouldn’t budge on that, you would presumably have a legal claim against the NHS Trust responsible, as you would have lost out by their mistake. But I’m getting ahead of myself here. If you don’t have a critical illness policy anyway, it won’t arise. And if you do, I’d expect it still to pay out, unless the NHS can PROVE they told you, but for some reason you forgot or ignored it - which hardly seems very likely! What did your GP say about this shambles? It wouldn’t be their fault, by the way, as it’s usually the consultant’s duty to break the news. By the time the GP gets the letter, you should already know! It’s very strange it didn’t somehow crop up in conversation, though. I’m sure, if my GP got a letter saying I was diagnosed with something serious, but I never mentioned it, it would somehow still come out. When was the letter dated? Recently, or ages ago? And were you on copy? Even if yours got lost in the post, it’s no excuse, as you are supposed to be told face-to-face. It avoids exactly that kind of failure of communications. Tina x Tina x

Thank you so much for your support peeps… Very much appreciated!

I don’t have insurance as I was refused last year when buying a new house on the grounds of the medication I was taking (Baclofen, Amantadine & Gabapentin) so no concerns about claiming :slight_smile:

The letter was from July this year… It was in the bit in bold at the tope where it states diagnosis… The letter was informing the GP that my odd optic problems were not a relapse, although all the Neuro dod was ask me to read the optician chart & test my reflexes!! However, clearly states at top: Diagnosis: MS!

I’m angry becasue after several years convincing myself I did not have MS, I know have to deal with the reality, without any professional support. My GP was great yesterday & she told me that she will be appointing a local MS Nurse, which she states should have happened ages ago.

You guys are wonderful and I really appreciate having this place to moan…

Thanks again xxx

Thank god your GP is on it now, she sounds like she actually cares about your health!

I’m not 100% sure but to diagnose RRMS I think there has to be a relapse(?) and certainly a remitting. I might be wrong tho, I was told likely MS and at the 2nd appt likely PPMS at which point I actually said “so definitely MS?” and the reply was “undoubtably” just unsure of type. I from reading on here I think CIS is where there’s only one incidence.

I hope you GP gets to the bottom of things for you and having an MS nurse is a step in the right direction at least!

Sonia x

Yes Sonia I understand that CIS is one incidence… However, I have now had several and am definitely in full flow at present. I had another MRI on thursday & there were new lesions, although the Consultant told me they were ‘nothing to write home about’… I thought, ‘well it’s not your myelin that’s disappearing’ :slight_smile:

My GP has been great and I’m really impressed with her tenacity and thoughtfulness…

Thank you for your support xxx

Hi Troski,

It’s often a relief when you’re diagnosed as you can put a name to all the symptoms and reassure yourself you’re not going mad!!

Top tip from me - if you can write down any symptoms you’ve had over the last 4 years, and how long they lasted it will help w hen you see MS nurse or Dr.

Write any questions down - otherwise you might forget. Ask for leaflets - this site is great for info.

if you get meds and pay for prescriptions get a pre paid prescription card £10.40 per month, great value.

Start taking vitaminn D3 ask your MS nurse.

Lastly stay positive and stay well!

Good luck, Jen x

So sorry you are also a victim of lack of communication and medical professionals following up appointments. It shocks me how bad communication is in the NHS. I had lots of tests in London 17 months ago and had to fight for the results because they weren’t sent to my gp, pain management dr or me. The neurologist I saw in London moved to new hospital shortly after seeing me and before my MRI, even tho he left my case with another neurologist nobody bothered to look at my results. After waiting nearly a year and half the original neuro managed to contact them and asked for them to be sent to him. Shockingly they sent the clinical findings to me and not to him. I found out I had 11 lesions that satisfy with McDonald criteria dissemination in space and demyelination. Obviously I had no idea what this meant so went on Google where I found out it could mean ms. I went to drs next morning and she had no idea, referred me to neurology & said I should be seen within 4 weeks. That was 6 weeks ago. Since then the neurologist has referred me to a senior neurologist who then referred me to a ms neurologist, all this without seeing me or speaking to me. The neuro team had a meeting about me and I’ve now been given an appointment with a ms specialist which is why I’ve had to wait so long. So scared.!

Oh Laura Flora, that is rotten! Start a thread so people don’t overlook your comment here. So sad that you’ve been messed around for so long. I truly hope you can move forward now, get an MS nurse and any medication you need! MS is tough enough to handle at any time so this must just make it worse :frowning:

When I hear stories like this I really do realise how lucky (if you can say that about MS!) I am. My diagnosis came about by accident really. First bad fall I went to an osteopath, she wrote to GP, GP referred to spinal unit, I was sent me for an MRI… then it all got sticky as they would not give me results… then I was referred to neurology.

Yes I was scared as I thought I had a trapped nerve so I didn’t know what on earth they’d found! As soon as I saw the neurologist he asked for a brief history of what had been going on,did a physical exam (embarrassing as did not realise balance etc. had gotten so bad). Then he showed me those little white dashes on the MRI and told me what he thought.

After that I had the brain MRI to see if all was as expected… now it’s a waiting game as seems likely PPMS :frowning:

I’m horrified for you, that really is awful. I hope you are coping ok with it all

Sonia x

Thank you Jen, Laura & Sonia…

It really does help knowing that you are not alone with all of this mysterious illness…

I think that this site os amazing because although I have great friends & family to support me, they don’t really understand my oddness! It’s also difficult for others to realise that you are ill, given that you often look ok!

I haven’t been on here for a long time as I had totally convinced myself that I had not got MS after all and have spent the last 12 months in denial I think.

Thanks for advice Jen… I will definitely give the D3 a go as I am happy to try anything that will help combat this illness! I will also try and write down all of my crazy symptoms as you are right, I always forget lots of things.

Big hugs to you all xxx

Thanks Sonia and Troski. Seeing there are so many people going trough the same/similar things is sad but reassuring in a life where things are so uncertain.!

I write down any new symptoms, symptoms that were originally put down to meds but still present now not taking them anymore and all ongoing symptoms because I know from experience that I forget to mention them when I see any medical proffesionals and if they don’t ask the right questions they go undiscussed.!

I totally understand your feelings of anger, I spent about 4 weeks constantly feeling anger after finally getting my MRI results. I also found out I have a dx of small fibre neuropathy (sp?) that nobody had told me about. I had originally put my pins and needles and numbness down to my dx of Erythromelalgia because medical professionals didn’t know much about it and couldn’t rule out the symptoms.

Hope you are all having a relatively good day

Hugs x