Have really been ill since my teens after having glandular fever. I’m now in my 50s. Would have longs periods of what I can only describe as something attacking my whole body, and then long periods of normality. Tick a lot of boxes for autoimmune lupus ect and have always doubted my diagnosis of m.e. I can’t tell you how ill I feel now for the last year or so without any let up at all. House bound virtually bed ridden. Didn’t really know about lupus until now and never had any autoimmune test through all those years. I git an ana test done myself and it came back positive. I’m so desperate about all this to be honest and with the label of m.e. Doctors just don’t take me seriously and I’m left to deal with this on my own was just wondering if anyone on here has been misdiagnosed with m.e. and found out it was autoimmune?
Many thanks and I’ll look forward to hearing your views
Beau
Ps I’m male not that that makes any difference or does it?
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Beau66
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If you suspect that your diagnosis of ME/CFS is incorrect then I would recommend that you request a referral to a rheumatologist following this positive ANA result. I would say that whilst ANA is used as one of the clinical markers for diagnosing lupus, it is not exclusive to lupus and can be seen in other autoimmune conditions and around 10% of the healthy population. Further tests will be needed to confirm any diagnoses.
If you'd like to read more about getting a diagnosis of lupus, we have a blog article here - lupusuk.org.uk/getting-diag...
It isn't uncommon for people with lupus to be initially misdiagnosed. A survey we conducted found around 45% of people with lupus are initially misdiagnosed.
Lupus is less common in males (around 9 out of 10 cases are female) but it certainly doesn't rule it out as a possible diagnosis and could further support your suggestion of being misdiagnosed if it wasn't even considered.
Thank you so much for reply and advice. I know by reading on here it’s hard to get a good rheumy. Have no money but thinking of going private and out on credit card as I’m so ill I can’t wait any longer. I live in Hampshire and thinking about going to see prof Chris Edwards in Southampton. Anyone heard of or been to see him? Thanks again. Beau
Prof Chris Edwards actually also has an NHS clinic at Southampton General Hospital if you wanted to ask your GP to be referred to him? I've met him and he is a lovely man and a very knowledgeable consultant.
Hi Beau66, l have read your story and can fully sypathise with you, in my late 20s I went down with a very bad Glandular fever, and it was nearly a year after before I started to feel better, after this I kept going down with allsorts of illness, at one point I ended up in hospital for sometime. As they could not diagnose what was wrong, I was given the label of M E and Fibromyalgia.
As there seemed nothing could be done only rest ect,ilived with this awful illness for 40 yrs, but my Dr kept me having bloods done intermittently. Until the last time I saw him and got the diagnoses of Lupus. It was such a relief as I felt nobody really recognised how ill I really was. He also said you can have manyblood test done and it not be picked up, and that I was very fortunate that on this particular time it had shown up and he was able to diagnose Lupus. I am under a very good Lupus specialist and my Dr has been sogood to me. I feel sure I have had Lupus for 40 yrs now.
I felt I needed to reply to you as my storyis almost the same as yours, I do hope you get sorted very soon and you get the help you need.
Thanks so much for your reply. Sounds like in the end you got lucky and I’m so pleased for you, but 40 yrs is so long to deal with a illness on your own. I really feel it’s coming to a head now and feeling like I’m dying every Minuit of every day. I know that sounds dramatic but I do. What tests did you have done? Beau
I feel for you Beau. Have you got a GP who is at least half way decent and can look at your ANA result and run other tests? If you can find one then it would be good to get your full blood count, inflammatory markers, thyroid bloods, folate, ferritin, B12, vitamin D, Rheumatoid Factor and ENA autoantibody panel done. They should be willing to do a full blood work up if you explain that you have a positive ANA and these symptoms.
One thing I have found myself is that the higher the numbers/ titre of your ANA, the more seriously they will take it. If you can find out about the pattern and your other blood work then this would be helpful too so they can see you aren’t going to just go away without answers. They should also do dipstick test of your urine to check for trace blood and protein.
It is a good idea to request print outs because understanding your own baseline and trends can be empowering when you feel so ill.
You really shouldn’t have to over extend yourself to go private. You have a right to expect the NHS to support your efforts to find out what is wrong. X
Thank you so much for your advice and taking the time to post it’s really appreciated. My ana was 1.80 so not very high. The consultant on the report said the pattern of my result is associated with scleroderma. Thanks again and hoping you keep well after so many years of being unwell. Beau
Oh okay - I have higher than you - 1:320 - after a few years of borderline ANA like yours, same pattern. I think I read that the nucleolar pattern is unlikely to be a false negative and I would say that you should definitely speak to your GP about getting other tests done and, hopefully, a referral to a rheumatologist. I believe Scleroderma and Polymyositis are both less gender orientated diseases than Lupus and Sjögren’s are.
As for myself I started out with an RA diagnosis in 2011 but last year was rediagnosed with primary Sjögren’s on the strength of a very positive lip biopsy result.
I seem to have a very neurological presentation and Scleroderma and Polymyositis have been ruled out despite pattern of ANA. I’m still seen at the Scleroderma clinic and am on max dose of an immunesuppressant often used to treat Scleroderma, Lupus and Vasculitis - even though I don’t have these so far.
I’m now looking to be investigated for Hughes/ APS too.
I was a healthy child until I was very ill for 3 months with glandular fever when I was 10, after that I was often poorly with one thing or another, nothing specific until I had flu in my 30’s that knocked me for six after that I developed post viral arthralgia, by the time I was 40 I started getting Raynauds, fatigue, joint pain, mouth ulcers, migraines etc with a positive ANA at a titre of 1:640, I was diagnosed with UCTD , life carried on as normal, I worked and cared for my family, I was put on Hydroxychloroquine and managed my bouts of fatigue until I was 49 and the hip pain started then some months later the fatigue completely floored me and I had a year off work, I was then diagnosed with Fibromyalgia by my then rheumatologist, I went back to work for 3 years very part time but as time went on the fatigue got worse and started developing other symptoms and I had to give up work 3 years ago ( I’m now 57) . I found that every new symptom I was getting would automatically be put down to Fibromyalgia until a friend told me to insist on the Gp looking into my thyroid because symptoms are very similar to Fibromyalgia which she did and I saw an endocrinologist too as I have multiple thyroid nodules but everything was normal, this was really the start of my journey for more answers but it was a cardiologist I was seeing for palpitations that picked up on my declining kidney function and wasn’t happy that I had been taking Arcoxia ( an anti inflammatory)for years for my pain insisted I see a rheumatologist, the first one I saw was completely disinterested and wrongly diagnosed me with Cutaneous Lupus and I insisted on a second opinion, I now have a lovely rheumatologist who listens and is very thorough, the first time I saw him he thought it was lupus but in the absence of internal organ involvement apart from multiple white matter brain lesions he decided to keep the diagnosis of Undifferentiated CTD and he has recently also diagnosed me with CREST ( limited Systemic scleroderma) . My ANA has shot up to 1:2560 anti centromere pattern in the last 18 months so is very strongly positive and I am also Anti Ro positive. Anti Centromere pattern is highly suggestive of CREST so I was wondering do you know what your ANA pattern is?
Like you I was feeling that there had to be more to my feeling so ill than just ‘Fibromyalgia’ , I felt very frustrated and it’s been a long hard struggle and but I know I have some answers now and a rheumatologist that cares and is interested in helping me and the support of a very good GP and without a doubt this forum has been a godsend. This forum helped me in being prepared for my rheumatologist appt too.
So that’s my story, I had to reply as I know exactly where you are coming from.
Try and find a rheumatologist that has an interest in connective tissue disease/ lupus and asked to be referred to them. With the guidance of Paul Howard on here I found a good Rheumy in a neighbouring trust, it’s well worth the hours journey for me.
I’m still on the ‘struggle bus’ as far as symptoms go but I now know why, I have a much better understanding of CTD’s, they can be very insidious, they can slowly creep up on you over years and change and alter so they can look like they veer toward a diagnosis only to change slightly and look a bit more like another CTD often making it difficult for a Rheumy to give a diffinitive diagnosis in the absence of certain positive blood tests, it is a journey often a long one but once you have a Rheumy that listens then you are half way there, so please get referred ASAP and if you need advice on preparing for your appt just ask on here.
Sorry this is a long one!
Please Keep us posted as to how you are getting on.
It’s horrible wondering if the doctors have got your diagnosis right or not and also can be very hard to shift a wrong diagnosis.
My own diagnosis is based more on having strong diagnostic ‘clues’ rather than ticking all the right antibody boxes. I was also lucky enough to see my rheumy for the very first time with very red swollen joints - there was no argument that something AI was going on!
I was chatting to one of the parents at my children’s school last week. Their 11 year old son has gone from being in robust health a few years ago to being severely unwell. They took him to a top London paediatrician and he was tested extensively for everything under the sun. He actually does have M.E/CFS and EDS and is in so much pain and weakness that he needs lots of time in bed/off school and I have witnessed him literally falling down from standing. All these illnesses are Life changing & M.E/CFS is no exception.
I hope you find the answers you need
Hi Beau, yes I was diagnosed with M.E for years after a particularly bad bout of glandular fever aged 18. I was rediagnosed in October this year. Turns out I actually had ankylosing spondylitis all these years (I'm 44 now!) I was never taken seriously, told many times it was all in my head, put on antidepressants, CBT, beta blockers etc. When they didn't work was simply told to take more pills or do CBT again! It took me all that time to get diagnosed because there is no antibody test for AS. All my bloods were always normal so I had not much wrong with me all those years in the drs mind. There is a genetic marker associated with AS tho and by total fluke I was tested for it last year. When it came back positive it was enough, along with my husband getting very bolshy with the GP to get me the referral I needed. The symptoms of AS overlap considerably with lupus hence my presence on this board: I was convinced that is what I must have! In AS there is inflammation in very specific areas that can be seen on an MRI and that is what it took to get my diagnosis. Annoyingly I told drs in my 20s that my immune system was in overdrive and I was proven right eventually. Unlike the majority of autoimmune diseases it is not my acquired immune system that is confused and attacking my body but a problem with my innate immune system - it simply produces too much tnf which causes inflammation and ultimately will cause my bones to fuse - this is why there is no antibody test, my body isn't producing antibodies in reaction to a perceived threat, its just fighting nothing all the time. I have great fun with all those people who tell me gluten free, masses of turmeric or new shoes (yes really!) Will "cure" me. No they won't - my immune system wasn't working when I was born! I'm faulty goods I am haha! 😂😂
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