Hi there, I am new to this board and hope someone could help me understand if this is a ‘typical’ experience because it has knocked me for six more as much as the years of symptoms I’ve had…..
I was sent to a rheumatologist with 2 positive ana’s, widespread body pain and fatigue. In fairness to the man, i was very nervous beforehand ( I took 2 pages of notes in that I was too stunned to look at) and the appearance of a well dressed woman (a patient advocate) in the room at the start threw me, as I had to ask who she was….
I started going through my symptoms, trying to give history, but felt I wasn’t given time to clearly think before I answered. He commented ‘are you a student?’ when he saw my notes in the waiting room, which led me to leaving them on the floor in his office.
I heard the words ‘it’s your personality’ which knocked my brain offline for a further few minutes. He did give a very detailed explanation on pain pathways and glial cells ( went over my head) and how we can change them via Dr Joe dispenza, TMS and hypnotherapy.
He agreed to look over my blood results which were ‘as good as my own’ ( I later heard that this man is not in the best health, he is definitely at/past retirement age) I don’t think I mentioned the 2 positive ANA’s as to be honest I thought that would have been on the referral 🤦🏻♀️My gp is very nice but until I got this result, I felt I wasn’t being taken completely seriously either.
I’m at a loss what to do next - I do feel his suggestions are worth following up ( money permitting - that’s dr Joe on YouTube then!). He said he couldn’t diagnose me as it’s not really a medical diagnosis yet I was prescribed norityptaline and melatonin.
So I have no diagnosis, yet have fibromyalgia?
positive ana’s x 2 with no further lab tests?
And the best one - it’s my personality??!
To his credit, he didn’t charge me as he could see that I was in tears during and at the end.
Also to his credit, about my ‘personality’, I’ve been on antidepressants since burnout in college at 19, and was put on lyrica for anxiety after the birth of my son 10 years ago to go back to stressful workplace ( I feel this masked the tender points/pain for some time) I have reduced these meds, under no pressure from doctors, over the years so am not a ‘drug seeker’. I’m definitely neurodivergent - ADHD and autism traits all through the family. I have difficulty absorbing lots of verbal info and getting my words out sometimes. I would never dream of explaining anyone’s illness this way however…
I still have all the tender points, morning stiffness ( or after short periods sitting) bone pain in my shins, blurry vision, breathlessness ( bending to tie shoes even), poor balance/gait, pins and needles in feet and hands, burning soles of feet in winter glands under arms randomly aching and horrendous brain fog and memory loss. Extremes of Heat and cold knock me out completely.
Should I ask my GP for an alternative referral?
I have some concerns about the ana’s, also low ferritin (13 in 10-150 range) and want to get proper diabetes check.
Or is this really what is on offer for us?
Thanks for reading x
*note, I later remembered the receptionist introducing me to the patient advocate before I went into waiting room, but never made the connection that she would be sitting in on my own appointment 🤦🏻♀️ It seems like I might need one alright to come out the other side of this 😂
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Blaaland
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Hi there and welcome, may I ask just out of curiosity did you you go private to see the specialist. Only I read some where in your post the man did not charge you? So I took that to mean you was paying for your consultation.
If it was me I would be going back to speak with my GP again.
Not sure what you mean you have fibro but no diagnosis? If you have not been diagnosed with any illness not just fibro that would means you don't have it. Is the way I look at it.
Maybe when he said it was your personality he simply was trying to be polite. After reading your post it does sound like you were anxious and overwrought. Then the crying and all the pages of notes he saw.
He may rightly or wrongly thought it was your personality for the want of a better word causing some of your issues.
But I can only give a personal opinion on what you posted. The same way the specialst can only go on what is in front of him?
Did your GP do all the standard blood tests to rule out all other possible illnesses before you saw the rheumatologist? If so have you thought of asking for a copy of the results. Or can you ask for a copy of the letter your GP sent to the specialist. It may give you some idea what the rheumatologist based is opinions on. Just a thought.
But I would still recommend you go back and talk with your doctor again.
Please take care and I do hope you get some answers soon.
Thanks Dizzy, it didn’t look like the Gp wrote much, it was a one liner.
I was very anxious and and frustrated as well as I’ve had health issues going on for such a long time (pins and needles in feet for 4/5 years) and I worry if I miss something my chance to find out will be gone. Which is counterproductive I know as the doctors like good cheer from their patients...
It was private yes as waiting times are so long here….
I don’t think my Gp can do any more detailed ANA tests without a specialist involved. She did say that a neurologist would be her first choice to refer to, but there is a huge shortage. I may ask to be put on the waitlist anyway and ring around.
My aunt has MS since her 20’s and I’m getting worried about my mobility at this stage - I’m 46 now. I love short walk in the fields and woods with the dog but am quite unsteady lately.
Thanks for your reply, I’ll def get in touch with Gp about iron and diabetes.
The anti nuclear antibodies can sometimes be raised for no particular reason. Some people have higher numbers with no underlying cause. However, a positive ANA can also be a marker for autoimmune conditions.
Ordinarily if they titrate to a particularly high number, other bloods will be taken to look at rheumatoid factors and other markers for autoimmune conditions, so check what your ANA is and whether other these tests have been done. In my own case, the ANA being particularly high, I was automatically tested for any other markers which led to a diagnosis of Sjogrens with secondary fibromyalgia. I was fortunate to receive care from both a neurologist and rheumatologist so had lots of tests to rule out MS and other neurological conditions.
The blood results I got (I’m in Ireland) didn’t specify titration, just (+2) homogenous and nucleolar patterns. If I google our health service it might say what they use…. I wonder if they even count the lower titrations things being as they are at present
I hope you are keeping well at the moment. Thanks a mill for sharing your experience x
Perhaps you could ask your GP what the titer was? The lab report should show it. Basically the lab will continue diluting the blood sample that is showing positive for ANA until it settles at its titer. The pattern, in my case speckled, might determine the type of autoimmune condition that may be present. My consultant told me not to get too hung up on the ANA. But do bear in mind that sometimes a positive ANA may be nothing to worry about- even a mild infection can cause an elevation which is why it’s not usually a stand alone diagnostic tool but looked at together with other symptoms and markers 😊
do not think can work with person, then ask for a second opinion.
was there another appointment suggested or a plan of action?
After chatting with your GP on how it went, the person may send a letter to gp so give time 3 or 4 days for that to arrive if email if in UK and use the snail mail could take longer at moment.
take someone trustworthy you know with you, if can to the hospital appointment
what does a patient advocate do?.
did you agree to the person being in the room?
what an odd appointment.
when saw my first rhummy was laughed at. no plan of action, just return to be laughed at again.
so asked to see someone else this rhummy, asked patient family history questions, if had accident trama, current issues, and medications, then was examined pressed in areas grimaced a lot as was keen not to scream at the person deafening them.
I took my friend with me,
was told what had and a plan of action. with a return appointment to discuss,
Thanks FM life, I think overall I was just unlucky and maybe we both got each other on bad days.
I don’t understand why patient advocate was needed, surely she could have stayed outside until I was examined (i wasn’t)
I wonder if it’s due to my depression/ anxiety, if my gp had flagged referral. We used to ‘flag’ people who had been previously violent, for obvious risks to personal safety, but honestly I wouldn’t be surprised. I used to work in health and now I am at the ‘other side’ I wish I didn’t know as much as I did ( the vast majority of my colleagues were very good).
I am one of those people that sucks up everything for a long time and then implodes, and unfortunately I’m imploding a t the moment 😅
I didn’t take my husband with me as I feel he has enough dealing with me crashing into bed before dinnertime, not currently working etc. but you’re right, I think I might be taken more seriously. It’s hard on family too.
Thanks for your reply, I hope you have a good weekend x
thanks for your kind wishes. By ‘implode’ I mean losing my temper (but in my mind - I was brought up to be a polite girl!) I haven’t had any falls or anything - thankful for all blessings 😂
Hi keeping things in often doesnt help, I do the same and it definitely makes me feel worse. Ive started telling family how i feel i dont feel so alone with all this. Cry scream bash a cushion its amazing the difference.
With the best will in the world GPs don't understand all disorders; that's why you're referred to a specialist. & not all specialists understand all disorders.
However this is possibly why your GP's referral was brief. Speaking on a personal level this has happened to me. I was able to speak out for myself when I saw differing specialists, but this isn't always possible. There's absolutely nothing wrong in taking notes in with you, but unfortunately you didn't have the opportunity.
I too am 'on the other side; I'm a long retired physio now suffering chronic pain (not fibro, rather the hypermobile type of Ehlers-Danlos Syndrome, which shares some similarities with fibro).
Please have confidence in yourself that something's wrong, & ask for a 2nd referral, then do take your husband with you; 2 heads are better than one, & you'll both remember more!
Thanks for your reply - I left my HSCP post a year ago 👋 OT - if things improve I may be a much better clinician if I get to return 🤞🏻🙏Lots of bendy joints in me, son and extended family - I believe Irish folk with EDS still go to UK for treatment as we have no experts here…... I love that the Zebra groups are becoming so widely known ( I’ve seen them on you tube) and hope they get to do more research into this.
Hope you are getting the help you need to manage it x
I don't know if this will be any help to you in illustrating to your GP what EDS can be like, but please read through the following: gptoolkit.ehlers-danlos.org/
Myself, children & grandchildren all have the hypermobile type of EDS (hEDS), with some neurological problems thrown in! It seems some with EDS can also suffer from fibro, but, if you don't have a hEDS diagnosis, might that be worth initially pursuing? Just point your GP at the 'toolkit,' which was developed by the Royal College of GPs together with Ehlers-Danlos Support UK.
I'm doing OK, thank you; somewhat on my own, but my GP did look after the founder of the EDS Support UK, who has the classical type of EDS, so my GP does have an understanding about EDS, & appreciated seeing both my son & I. There can be 'variable expression' even within a family (with an autosomal dominant genetic disorder), which we illustrated.
Wishing you all the best in pursuing your diagnosis/diagnoses. Please let us all know how you get on.
I’m sorry to hear of you’re experience, especially when you’re so unwell. Personally I think you should go back to your GP and ask for a second opinion. Wishing you well.
OMG, what a terrible, confusing, unsettling experience! Poor you. It may take a long wait, but I would try again (hard when you're feeling cr.p most of the time, I know).
Maybe a different GP who can send you to a different rheumatologist. You ARE allowed to request not to see certain doctors, even on the NHS! It's not like it's going to disappear and leave you with nothing to discuss with the rheumatologist, sadly.
I saw an NHS rheumatologist to whom I took 2 full pages of my historical symptoms, and he proved my scepticism wrong by paraphrasing these notes in his reply to my GP (to which I now, amazingly, have access online now via the 'My Medical Record' website).
This very same rheumatologist, in my follow up consultation, proceeded to regale me with a rant about his 50 year old wife who dared to want half his pension on their divorce. When deciding whether to make an official complaint about him, I took into account his diligence in the first consultation, and decided he was just having a terrible day ( my appointment that day had been changed from a specific time after midday to 'just turn up at 9am', so I assume he had to see his solicitor or go to court that afternoon).
I was 'given a diagnosis' of fibromyalgia, after other possibilities were ruled out with a big bunch of different blood tests and some xrays, and this is presumably important if you need to claim benefits or make arrangements with you employer.
It's unfortunate that even doctors have bad days, and as a consequence, so do their patients on those days.
Thanks Gaballetto, you made me laugh at the thought of your oblivious consultant waffling on about his pension fund while you were there needing ….. healthcare 🙈sometimes if you didn’t laugh, you’d cry 🤪😂 yes, we do all have bad days, you were very fair on him. I hope it didn’t slow down your diagnosis too much…
I’m glad to hear about your experience of having other diagnoses methodically ruled out. That was what I thought typically happened - it’s good to hear it from others. Online health records are a great resource 😊
I don't know if this is helpful to you, but I was diagnosed with a rare autoimmune illness after 19 years of being told I had fibromyalgia and.M.E.
My condition is a form of vasculitis called Urticarial Vasculitis Syndrome. It affects the small blood vessels and presents with symptoms like lupus. The symptoms are wide ranging and not always obvious to connect at first.Many of the symptoms you describe, I have, and have suffered from for years.
My bloods never tested positive for ANA, although I did test positive at the outset for rheumatoid factors. These results were dismissed as being of any significance, however .
Eventually in 2019, I got to see a rheumatologist who ran a test that nobody else had ever thought to run - a blood test for anti-C1q antibodies. These were highly positive in my case and led to the diagnosis of UVS. I am now on treatment with hydroxychloroquine.
Its possible to have an autoimmune disease without having positive blood results demonstrating autoimmunity. For example, around 15% of people with rheumatoid arthritis don't have positive blood tests. So it's important that doctors take into account the whole clinical picture and not just the blood results, as these change and fluctuate anyway.
You have positive ana which is highly suggestive of autoimmunity and definitely warrants further investigation, by a rheumatologist and possibly a neurologist. A rheumatologist would be able to run the anti-C1q antibody test for you as well as a more thorough autoimmune panel of blood tests. I imagine these would be very expensive privately. My G.P. could not run these tests for me - her NHS access doesn't allow GPs to order these tests.
Please note that a positive anti-C1q antibody result isn't conclusive diagnostically in itself ofa particular autoimmune disease as it can be associated with lupus, rheumatoid arthritis, MS, sjorgrens, vasculitis. But what it does show irrefutably is autoimmunity & inflammation as opposed to just a pain syndrome.
What a G.P. can do (at least in England) is to run a blood test lookingat at complement levels, C3 and C4 in particular as these can run low with autoimmune diseases like lupus and vasculitis. That will also potentially help found a diagnosis which allows the underlying inflammation/disease process to be treated as opposed to just the pain.
Please don't give up trying to get a full and to thorough examination. Persist. Urge your GP to refer you to a good NHS rheumatologist urgently.Reach out to organisations like Lupus UK, Versus Arthritis, Vasculitis charities for recommendations. Take your husband or trusted friend to the next consultation. Have your symptoms and questions summarised on a sheet of A4- even politely email the consultant/their secretary in advance of the consultation explaining you have brain fog and fatigueif this is ok.
I’m glad you finally found someone who got to the root cause of your issues 😊 that’s what we all would hope for, and the sooner the better . Hope the hydroxy is working for you 🤞🏻
Thanks for this
‘You have positive ana which is highly suggestive of autoimmunity and definitely warrants further investigation, by a rheumatologist and possibly a neurologist. ‘
I have no-one in my life to say this to me at the moment, I’m just feeling massive pressure to get back working to keep us afloat. It’s what I think needs to happen too, but am worried about being a nuisance and my nice helpful Gp getting fed up of me.
I didn’t have any Rf and have no noticeable swelling - I looked up your condition and don’t have the skin issues at all at the moment but have had in my younger years at times…. I’ll definitely keep in in mind, thanks for that
With the recent cold weather my immediate concern is my toes hurting, cold and painful - went to bed at 8 last night to try and get warm (thanks Putin or whoever is at the back of all this!) I’m going to see Gp when HSBC’s gets paid at end of month and insist on up to date tests for diabetes and my low iron issue, which might improve my immediate health. There are hardly any neurologists here in Ireland at the moment, so literally no one to refer to as I understood her last time 🙈 but maybe the infinite waitlist for another rheumatologist is better than nothing while we sort financials.
I love your screen-name by the way, I hope you are lucky enough to have horses in your life or at least get to spend time with them! Dogs are my saviour, have a lazy lurcher Juno here waiting for a walk…..hopefully will help warm up my toes as well! X
You are most definitely not a pest!!!! Please fight that way of thinking about yourself- we've all been there, but it only serves other people's purposes and agendas, not yours.
There are plenty of good people on this forum who understand what you are going through as they've probably all been there at one stage themselves. Please do consider alsso reaching out to those on the Lupus UK forum on here, as well as to the charity itself. They can provide further support and practical pointers for you and will maybe know if good rheumatologists where you are.
Seeing a rheumatologist is a very good first step. I had low ferratin as part of my picture, as well as a tendency towards periodic low neutrophils.
You might find it useful to ask for copies of all your blood results from your GP and hospital appointments so you can see for yourself what is within and without the 'normal' range. You can also present copies to any consultants you see.
My hands and feet get freezing too. Not great to now have this economic turmoil making us all watch the thermostat!! Electric blankets and heated beanies help me.
I adore horses, always have, but can't ride anymore and developed an allergy to their hair when I last rode around 10years ago. I miss them terribly and feel that im missing yet another part of myself!!! I also love dogs, but can't keep one myself as we live in a flat. Nevermind - plenty of nature growing on our little balcony.
The economic situation is awful, but as far as you can, please don't put pressure on yourself to return to work when you are clearly too unwell to cope. These conditions s just bite back twice as hard when you try to push through them. Your health is paramount
Please do some research via the charities/ this forum as to whom to be referred to and push your GP for a referral and some more blood tests in the meantime. As well as a full blood test, including iron, B12, vit D, kidney and liver function, ask to have your complement checked, especially C3 and C4. It will be helpful to akeep a rheumatologist to have had your GP checking these.
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