Hi everyone, I have posted before re symptoms experienced over a period of time which have worsened in past 2 months. Was initially referred to MSK clinic, had cervial spine MRI, all clear. Referred to neuro, 1st appointment was last week, 15mins. Referral from GP did mention possibility of demyelation. Brief history taken, did not get time to explain all symptoms, some basic reflex, strength tests done. The lady consultant was a bit abrupt to say the least. She said her clinical tests (reflex etc) were normal so probably not demyelation in her opinion but referral was done for brain MRI which I was pleased with. She said if the scan was normal then I would be discharged with exclusion diagnosis of fibromyalgia given symptoms. My vit D deficiency was dismissed as 'everyone in the UK is prob deficient". I did receive letter for follow up OPA in August days later though, I wonder if this will be cancelled if scan is ok? I came away a bit bewildered, on reflection and reading about fibro, she may well be right, most symptoms do certainly fit, but do also to MS. I don’t want either condition but to pick one of two I’ll take the fibro and try to find best ways of coping with this awful chronic pain etc… Which is starting to have a big impact on my life. I am a nurse, work full time, busy life. Work are sympathetic, home so so, the invisibility of symptoms I find hard to deal with, my body has been ‘taken over’ and all i seem to do is moan and groan, simple tasks can render me in terrible pain and stiffness, numb, altered sensation and fatigue. I’m trying hard not to sink but it’s hard isn’t it. MSK have recommended GP refer me to rheumatology if discharged by neuro. Have others experience of fibromyalgia diagnosis? Best wishes to all stuck in the land of limbo. Ally x
Hi Ally, I was diagnosed with fibro years ago and prior to that had been diagnosed with ME/CFS and even earlier, in my late teens they said I had Glandular Fever. Looking back, all the illnesses have had very similar symptoms but each time after a period of remission things come back bigger and fiercer than before. I’m now approaching 40 and have had enough of the tooing and froing and would really like someone to take me seriously and do something to help as my kids have pretty much become my Carers which seems very unfair on them. Dr’s seem disinterested and the letter I received following my recent 1st appointment with my neuro was nothing short of farcical! Orthopaedic consultant referred me to neuro as he thought my symptoms and history were strongly suggestive of MS. Like others who remain I diagnosed, it’s not that I want a diagnosis of MS, I just want to know why I’m experiencing the problems I am and to get some adequate treatment for it to enhance my quality of life. I don’t care if they call it something else as long as they acknowledge there is something genuinely wrong with me and help me find a way of feeling and/or controlling it better. From reading posts here it seems my struggles and the many different diagnoses are not uncommon. It’s quite disheartening to think so many of us are left in limbo for years/decades. No small wonder that depression is a common symptom of MS, fibro and most other invisible illnesses is it?! Good luck. Keep your chin up. X
I was diagnosed with fibro with no tests done at all. It was only when I burst into tears the reumatologist did the pressure point test, which didnt affect me at all, so in my opinion it was a wrong diagnosis and asked for a second opinion and xrays. The xrays showed I had arthritis, which made them look at my joints and diagnose me with JHS and “secondary” fibromyalgia, I was sent away told to take 8 paracetamol aday and discharged. but none of this explained the fatigue, so was eventually diagnosed with ME/CFS in nov 2012 by an infectious disease doctor and sent for therapy. Which was as much use as paper wellies. Im now waiting for my MRI next month following referral to neurologist with pins and needles and numbness, again the neuro is dismissive and says its migraine (after a 3 minute appointment!!) and blames it on drinking 4 cups of tea a day (funny, never seen health warnings on packs of tetleys) but hopefully theMRI will clear things up once and for all. It seems being treated like crap is par for the course.
I have had health issues for nearly 30 years, and have never really been able to get a proper explanation as to what is going on. I did get a diagnosis of ME/CFS 23 years ago, and one of Fibromyalgia after a 5 minute appointment with a Rheumatologist 18 months ago. I am now being investigated by a Neuro as I have multiple lesions on my brain, although he says these are non-specific and don’t point to anything in particular. A previous vascular Neuro, my physio, the doctor who did my LP, the lady who did my EPs, the balance expert who carried out some balance tests and a consultant I saw about something completely different all seem to think I have MS, but all tests seem to be coming back normal so far. I am seeing the Neuro again in 3 weeks, and I know he is going to discharge me, probably saying all my symptoms are due to the Fibro (despite the fact I don’t have the chronic, unmanageable pain that is supposed to be the defining Fibro symptom). I tend to think that diagnoses of Fibro and ME are handed out when symptoms don’t neatly fit into any other box. Don’t get me wrong…I’d rather have Fibro than MS, but just wish there was the same level of support, treatment and recognition available for Fibrobsufferers as there is for those with MS. I think you will find a lot of similar stories on here…some who have gone on to be dx with MS and some who haven’t. Good luck with everything, and fingers crossed for a clear MRI xxxxxx
hi, im waiting for results for a brain scan, and my neuro said he thinks it is either ms or fibro, in his opinion it couldnt be anything else, said if my scan is clear its going to be fibro, although he wouldnt be the one to make an official diagnosis. he told me the two often have similar symptoms, so im sure there are quite a few of us in the same boat. either one isnt a nice thing to deal with, neither have a cure, so for me the outcome is very similar with whichever one i have, its all about managing the symptoms x
Hi everyone, A fair few similar stories and diagnosis there. I rand the MRI dept today and they gave me a cancellation for Wednesday, not bad as only 7 days since referral. If it’s clear I’m going back to GP, if if I have to start again with rheumatology so be it. I’m not dismissing fibro, maybe also secondary to something else. Have had eye probs which after tests optician said dry eyes, also sensitivity to light - recent holiday in sun eyes were terrible and in air con (several years like this) and blustery rash in exposed to sun skin face and body. Other diagnosed separate incidents over 20yrs plus from glandular fever at 17yrs, IBS, over active bladder, contracted joint fingers and toes. family history of alopecia, skin complaints, lymphoma. All autoimmune probs. Sjoegons, lupus??? All I know is it’s something and am having a big flare of whatever; Thank fully support is right here and frustrations, niggles etc can be aired without been ridiculed or dismissed - thanks 
Ally x