Forum

Anyone with a pevious diagnosis of ME??

In 2008 i got diagnosed with a dizzy, balance, vertigo condition. Which i still have, Then had a car crash in 2010, which then led on to me being diagnosed with fibro by a rheumatologist, After being tested for lots of things,clear MRI n CT. n negative nerve test to my legs. They said i had fibro which I had never heard of. When I started getting ill, I thought I had MS as alot of my symptoms are the same.but coz of the clear MRI they said its fibro. Im just not sure if its fibro, the doctors just keep giving me different pain meds etc n just said get on with it really. Not sure if i should just except it or ask to see a neuro.

Only you know your own body, Pinkprincess, and if things don’t feel right then, unfortunately, you have to fight for more investigations.

One piece of advice that keeps cropping up on here is to keep a symptom diary. This might be a good first step in approaching your GP. Just tell him you are concerned that there is more going on, show him the diary and see what he says. If he dismisses it, then you will have to become a little more assertive. Maybe you could take someone with you to back you up??

It’s dreadful, isn’t it, that, not only do we feel ill and very concerned about what’s going on with symptoms etc, but we then have to fight to get anything done about it.

I expect others on here will be able to give you much better advice than this, but the diary may well be a good start.

Good luck xx

Hi, thanks for replying considering you was the one wanting info and now your helping me lol. I think keeping a symptom diary is a gd idea. I have no idea what’s fibro symptoms and what isn’t, i just seem a bit different from the other fibro people. I don’t wanna read too much into MS or il convince myself i have it. But will see symptoms over the next few wks i think. That’s the thing im not gd at is being assertive, il come out n go, damn i wish I said more or forced the issue more. When I first started getting ill, I wrote down all my symptoms and googled them and MS n ME came up. So I went to the doctor, (one i hadn’t seen before as my doc wasnt available) n he basically told me to stop googling as this week it said ME/MS and next week it might say cancer!! I couldn’t believe he said that, he then said i needed to basically get out there and exercise more and stop staying indoors and this was only 3 years ago. I basically came out there crying. I did see my doc a few wks later n she referred me to rheumatologist. Another time i went doc for flu, at the time of swine flu n she said i was fine n to go home n take cold n flu tablets. Turned out i did have swine flu. So yeah always a bit scared to suggest things to docs. Sorry for going on. Victoria x

I know exactly what you mean…I take everything my GP says these days with a pinch of salt! I queried something he said recently and he more or less admitted I was right and he was wrong but still expected me to go along with what he was suggesting because, in his words… “None of your symptoms make any sense and I have to do something!”. This was when I went to see him because I had developed tingling down the whole of the right side of my body and everywhere below the waist, and he insisted on sending me home with sheets and sheets of exercises to do for trapped nerves in the neck and back, even after admitting my symptoms didn’t really tie in with that!! Scary stuff, huh?!?

Anywyay, I would say keep going with the diary and don’t let them fob you off. I know it’s easier said than done, and I am the worst one for not being in any way assertive, but there are ways you can get some action without coming across as too aggressive. I have found one really good question when they are trying to fob you off is simply…“So, what do I do now then?” or “So where do we go from here then?”, and then just sit there and look them in the eye and just wait for them to say something. That way, you’re not coming across as aggressive, but you are showing them that you are expecting them to keep trying to help you and are looking to them for answers.

I have to agree that Google can be a wonderful thing, but can also be very scary, and I have to admit to becoming slightly obsessed with looking up symptoms etc when I first became really ill. I suppose it’s a fine balance between being informed and prepared, and making yourself more anxious than necessary…don’t they say that, sometimes, ignorance is bliss??

Anyway, good luck with everything, and keep writing that diary! xx

Hi, I’m another one that was initially dx with ME.

After months of symptoms (and in retrospect I realised that it had been years of mild symptoms) my GP sent me to an ME specialist. She dx me with ME (which was at least a dx as by that time I was too unwell to work).

She sent me for a ‘routine brain MRI’ and I was told there were some ‘bright spots’ but they thought it highly unlikely that I had MS. They sent me for a spine MRI which came back clear.

In the end they wanted to do a lumbar puncture. At first I said no… but then the very nice registrar told me that if LP didn’t exist he would dx MS (he was the first one to acknowledge that it really might be MS)… but he needed an LP result to dx MS… so I had it… was terrified but it was actually easy and not painful.

It came back positive and I was then dx with MS (and later with PPMS) and was then told that on the brain MRI that I had had about 18 months before (all the above took ages between appointments) the radiologist had noted ‘looks like MS’.

So, it was a long old haul to finally get a dx of MS and I have to say that by the time I was told I knew I had it… but there’s always that sneaking suspician that it’s all in your head!

Really (after that long saga) I wanted to say, don’t worry that the neuro will dismiss it as being ME. As you have had an abnormal MRI they will have to investigate further… and even if they keep saying it’s unlikely to be MS (like with me) it is the results of the tests that count.

Good luck and hope you get some definite answers soon,

Pat x

So I have started with my symptoms diary, which I haven’t done since i first got ill over 3 years ago, and im actually shocked how much my body goes through every day. Obviously I know im ill, but untill you write every bit down, you don’t realise how many symptoms you have in one day. Im writing every single bit down as it happens atm, otherwise i forget by the end of the day. But I will shorten it all down by the time i go to the doctors, dont think they would appreciate a 10 page essay lol. It’s really good to read you posts on here, makes me feel that im not a hypochondriac lol. Victoria

Sounds good, Victoria. It is quite scary when you break everything down into separate symptoms, isn’t it?

Pat - I’m so sorry you had such a long journey before final diagnosis, but at least you got there in the end, albeit not exactly the diagnosis you would probably have wanted. I think sometimes the not knowing is so much worse than knowing what’s wrong and being able to get on and deal with it.

I have no idea where my journey will end, if it ever does, but I am determined not to be fobbed off any more and will keep going until I get some proper answers.

I am so grateful to everyone who has replied to this thread…and it is so interesting how many of us have been living with a questionable diagnosis of ME for so long

Wishing you all good days and nice doctors xxxxxxx

Hi, just want to add a little bit about symptom diaries.

They are very useful before you are dx as it is so easy to forget symptoms once in the GP/neuro’s office… BUT …once you are dx stop keeping the diary.

I kept one for a while when I was first dx and it became a very depressing thing… I was focussing far too much on my symptoms and reading previous entries made me realise how much my life was changed by MS.

So use it as a tool before dx… then bin it and forget it!

Pat x

That’s a really good point, Pat. I can imagine how I could easily become totally obsessed with my symptoms, and to see them written down like that eveyr day would probably make me even worse.

This is such a great forum!

Yeah think your defo right. As i said I hadn’t written my symptoms down since i first got ill to show my doc, after all the investigation and finally being told i had fibro, i then stopped writing it all down. Now 3 yrs later starting to write it again is scary. But yes only doing it for a wk untill i see my doc. Im really scared about bringing it up with my doc. I have no idea what to say n if she asks why I don’t think it’s fibro n something else, il just sit there n go umm i don’t no.lol I think iv got to pick a doctor that im not scared of. Im being investigated for endometriosis atm, i told my bf i will talk to my doc once my endo has been sorted out,n he told me no i should speak to the doc next week. He wasnt with me when I was having tests n scans etc to find out what was wrong, I think he thinks il see doc have one test n get told what I have, think hes in with a shock with how long it takes.

A bit hard going but I really hope that this is the start of something…

http://www.biomedcentral.com/1741-7015/11/205?fmt_view=classic

Thanks for that, Auntiemogs. No wonder there are so many of us then!

The conditions may be very similar, but the treatment, understanding and support from the medical profession for each are poles apart!

Thanks for that Mags! Mind boggling!

But really interesting. There seem to be so many of us that ‘start off’ with an ME/CFS diagnosis.

Hope you’re doing ok at the mo? xx

Ok well I had done my list n was ready to book a apt with my doc to discuss bein referred to the neurologist but been havin a lot of blurry vision, double vision eye pain, so thought I’d see optician as I know as soon as I see my doc she will tell me to see the optician as not been for years. Well booked in for eye test n my muscles take a while to focus n then she looked to the back of my eyes n she says my optical nerves are swollen, she took a pic n showed me on the screen n even I could tell. So she calls my doc to discuss it n then books me a emergency neurologist appointment for tomorrow. Pretty worried as don’t think this is normal is it. Google seems to bring up horror stories. So gonna see how things pan out for tomo. Pretty worried :frowning: