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Mystery illness

Doctors don't know what is wrong with me which has left me with no option but to try and find out for myself.

I've been unwell and very run down for years but in the past year my health has really deteriorated and the symptoms have become very debilitating.


Pins & needles in my hands, feet, face, head, arms and legs.(1 year)

Headaches, pressure and burning in ny head (past 6-7 weeks)

Pneumonia and pleurisy and costochondritis.

Trouble swallowing.

Pain when food hits the top of my stomach, constipation, swollen abdomen, acid reflux, hiatus hernia, ibs, diverticular disease.

Interstitial cystitis/painful bladder syndrome.

Multi nodular thyroid goitre, previously borderline underactive but never diagnosed though i was put on Levothyroxine for the goitre.

Mouth ulcers and lumps at back of mouth in my throat.

Sinus infections.

Dizzy spells, off balance, weakness, shaking, feeling drained and faint.

Sore swollen eyes, was treated for allergic conjunctivitis but it wasn't that as treatment didnt work. Painful when i move my eye, extremely sensitive to lights and daylight have been wearing sunglasses for 3 week.

Swollen hands and face.

Very sore, stiff joints especially in the morning.

Sore neck and spine.

Flank pain on both sides.

Skin rashes and itching.

Hair breaking.

Dry skin, hair and eyes.

I was told last week my folate was low.

I had low cortisol a few years ago and low B12 then also but never followed up.

I get low iron quite often.

Heart palpatations, purple lips.

Exhaustion, can hardly walk.

I have made a private appointment to see a Rheumatologist because doctors seem to thinkit is fibromyalgia and anxiety andi know it is not.

Eye casualty said possibly an autoimmune disease of MS.

Bloods as of a few weeks ago

Folate 2.4

B12 364

HBA1C 36.0

Things have got so bad i actually feel like it is becoming life threatening.

9 Replies

All I can say to you is that if you know it is autoimmune rather than Fibromyalgia then you must keep on fighting for what you believe. I'm completely on your side.

I can't comment on your bloods apart from saying that your B12 is lower than ideal and it won't harm to get some Jarrow methyl B12 sublingual because it is one vitamin we can't O/D on easily and, if it helps you feel better then this can only be good.

Also has your thyroid been tested recently?

I felt ill in same way as you describe for many years but I just shrugged and put up with it, having never been a healthy person and having always been told by my late mum that it was all psychosomatic.

However a good GP finally discovered that I was Hypothyroid and treatment stopped my alopecia in its tracks - but nothing else improved. Finally - following a misdiagnosis of RA and later, after several new doctors had treated me like a neurotic middle aged woman - I got rediagnosed last year with primary Sjögren's after my ANA showed clear positive and I had a lip biopsy which met all the diagnostic criteria.

I am now hoping to find funding to undertake an artist led PhD about visualising the invisible. I want to create art work that will hopefully empower others to find their own way of demonstrating that something autoimmune is occurring - in order to be believed.

Part of this terrible journey is about finding doctors who will believe. But if you are stuck with the existing doctors then I have found that looking them straight in the eye and explaining that you won't stop looking until you find what is wrong so would prefer it if they started helping you in your quest.

If any doctor tries to tell me that I'm oversensitive to pain then I explain, politely but very firmly, that they are wrong. I point out calmly that any pain I have experienced during my lifetime has invariably been because something is very wrong - from abscesses to sepsis to dry eye to kidney infections or UTIs.

My inflammatory bloods are always somewhere between elevated and very high. Now they tell me this is the Sjögren's because my blood is so concentrated. I agree to an extent - but I can predict the fluctuations by how much pain I'm in so either they are wrong about Sjögren's or there's something additional going on! This has been my biggest visual clue that I should trust my pain implicitly!

A good doctor is just like a good detective who should agree to work with you in your quest for cause of your symptoms.

It takes a lot of persistence but my sense is that you are well on the way to proving what you know to be true.


I think a visit to a neuroligist might benefit your symtoms sound very like me before I was diagnosed

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Diagnosed with what?

Im getting a head and spine MRI tomorrow.

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Sorry to hear that you have been feeling increasingly ill and don't feel like you are getting adequate answers and treament. A lot of us here have been in that boat at various times.

You are being very pro-active by keeping a record of your symptoms and keeping an eye on your bloods etc. Which is a great start. I felt that my doctors weren't taking me seriously enough about 18 months ago and I started to keep a daily diary of my symptoms, I take it to all appts, as "proof" of my issues. I also take photos of any swellings and skin issues, rashes etc, and get them printed off. No one can agrue with a photo.

It's good you've made an appt with a private Rheumy. Is s/he a lupus specialist? I ask because a lot of us here find that your general Rheumatologist is not enough sometimes. They deal with mainly Rheumatoid Arthritis, MS etc and lupus is still misunderstood by a lot of them as they do not deal with it often enough to have an indepth knowledge.

Lupus UK can help you, as they can tell you where your nearest NHS recognised lupus expert is based and where your nearest Centre of Excellence for Lupus is. You could possibly go back to your GP and ask for another NHS referal then, to a lupus expert. In England you are entitled to a second opinion. Your GP might be helpful. Keep them onside.

Alternatively tell us the area you live in and maybe someone here can tell you of a good lupus expert privately in your area. It would be a shame to pay to see someone and then feel it hadn't got you much further.

I travel from Pembrokeshire to see a Lupus specialist in London now - London Bridge Lupus Centre - as I was struggling locally.

Finally, get copies of your bloods, urine test, xrays reports, report of your brain MRI etc etc and take them to the private appt.

I did this in April at my first appt in London. Itmeant that I didn't have to pay privately for bloods etc, as the Consultant had all the information he required to hand. So my notes, photos, copy letters from rheumy, blood test results, xrays and scans.

Finally, these appts are over in a flash. Lupus UK have a leaflet on how to get the best out of your appts. Plus, if you use the search facility on this site you will find others that have posted about preparing for appts and taking notes etc. I would advise you to make clear notes and add your questions. I take 2 copies. I hand them one. That way if you forget something or run out of time, the doctor sitll has your written notes - he can refer back to it when he does the follow up letter and he cannot say you didn't mention something important. We all struggle with memory issues after all! I have often come out and thought, damn, I didn't mention.......

Good luck with it all and let us know how things move forward for you.


PS - Who referred you for the brain MRI?


The Neurologist refered me from head and neck MRI after A&E referred me to him directly.

The MRI is tomorrow.

Im at the eye clinic now waiting to be seen.

I seen the Rheumatologist last night and she done some blood tests, she onky done ones that weren't done before to keep costs down as much as possible.

Thanks for the advice.

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Great. With rheumatology, eye clinic & A&E & Neurologist all working swiftly, I hope you get some answers. Please let us know how it goes.

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Thank you! MRI today at 4pm

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Hi Clairel1985,

I am sorry to hear you are feeling unwell, I do hope your upcoming appointment with the rheumatologist will provide you with some clarity and understanding of what your symptoms are representing.

Headaches, oral/nasal ulcers, joint/muscle aches and pains and light sensitivity are all symptoms commonly associated with lupus. These symptoms are discussed within our information pack which you can download or request here: lupusuk.org.uk/request-info... .

Have you been tested for lupus?

You may wish to read our booklet on ‘The Diagnosis of Lupus’ here: lupusuk.org.uk/wp-content/u...

Mouth and nose ulcers often occur during lupus flares and may be associated with joint pains, rashes and hair loss. You can read our blog article on coping with oral and nasal ulcers here: lupusuk.org.uk/coping-with-...

We published an article on our blog about pain management which I hope you will find useful: lupusuk.org.uk/pain-managem... .

Rashes can be induced by sunlight as well as other factors which are discussed in our ‘Lupus and the Skin’ guide; lupusuk.org.uk/wp-content/u...

We published an article on our blog about coping with light sensitivity which you may like to read here: lupusuk.org.uk/coping-with-...

Before attending your appointment with the rheumatologist, you may like to read our blog article called ‘Getting the Most From Your Medical Appointments’ here: lupusuk.org.uk/getting-the-...

Please let us know how you get on, wishing you all the best.


Hi thanks for the information. I already had my appointment with the Rheumatologist and she has tested my ANA and a few others so waiting on results.

Im waiting to go in for my MRI now.

I really feel like i have Lupus after reading the symptoms. I have all those symotoms and couldn't work out why i am always getting so run down.

I will see if my ANA is posiitive or negative, if it is negative and not lupus i haveno idea what is causing all my symtoms.

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