Struggling for a diagnosis! Help!

Hi,im a newbie im hoping anyone can give me some advice as im struggling to get a diagonosis on my condition.I do believe i have lupus although my bloods came back negative.

Ive not heard of it until a few months ago when i was admitted to hospital with a suspected stroke im 39! The neurologist i saw asked if i had been tested for lupus before as he had looked through my long list of notes over the years and he suspected it could be.

10years ago i suffered with swollen glands,i was treated for tonsilitis but it got worse over a month of antibiotics i started swelling on my face ,eyelids first then my throat and lips,i was told it was an allergic reaction as i was breathless too,i was given prednisolene to calm things down ,this took the edge off but i still looked horrendous!

My Dr referred me to an immunologist as id developed a rash also around my neck ,it was sore and had flattened pustules.

The immunologist i saw for 3yrs he put me on Mcycophenalate after trying Aziothioprine as i reacted badly to this! My bloods were always fine, and he hoped it was a blip in my immune system after a bad virus, i felt back to my normal self.

However after i gave birth to my second child 4 yrs ago things have gone from bad to worse healthwise! I dreaded going to the doctors as im sure they think im a hypochondriac!

I had to give up work 18months ago running my own salon as i was struggling with my joints and fatigue,i had shingles 8 times in a yr, my Dr refered me to a rhuematologist,i had mouth ulcers,nose ulcers which had a biopsy on but again nothing showed.

I am considerably worse during menstrual times and have brain fog and memory loss ,i see a podiatrist as i have tendonitis and have carpal tunnel and suffer with the nerves in the right side of my neck,i think this definitley contributed to my funny turn a few months ago.whilst in the hospital speaking to the neurologist briefly he asked if i had chest pain,thinking he meant at the time of the stroke i said no,but i had a few weeks before not central chest pains but on my left handside during the night and i have had them since!

However since being discharged from the stroke ward i saw a new rheumatologist maybe i went with too high hopes of finally getting a proper diagnosis rather than psoriatic arthritis which they had  been treating me for with sulphasalazine,and saying my other symptoms werent connected!!

What a disappointment it was!! I was in tears as she brushed it off as the bloods are all fine and im a healthy woman from all the results and i should be pleased!! The suspected stroke was possibly just a serious  migraine .

Yes i am happy that the results all look good but im still in hell and awaiting the next flare up to deal with on my own,ive asked my doc to refer me back to the immunologist,im still waiting!

sorry its so long but i would value any feedback ,this thing is affecting my young family also as the tiredness just takes over me and im fighting to stay up so i can at least put my 4 yr old to bed at 7pm most nights so i can go to bed !

20 Replies

  • im a simular situation too you as my bloods keep coming back as fine. I keep going back to my rheumatologist with ether new symptoms or worsening of the ones I already have but they wont do anything. All he has said is that he will keep me in his clinic in case one day it shows up in my blood. Which doesnt help as I now have to explain to my podiatrist on Wednesday that due to getting ill a few times, Im not improving as well as we would of liked even with the hard work im putting in. 

    Luckily I have a nice gp fighting my corner who contacted the rheumatologist to find out why there not helping. They have since offered me another appointment to discus my health in which I will be demanding answers from them in regards to a diagnoses. If he still doesnt give me the help I need them I will be going back to the gp as you are entitled to a second oppion. 

    So the best advice I can give is to find a gp that cares and get them to help you. it might be hard at first as you might have to weed out the ones who fob you off. Though trust me once you find the right one it will be helpful. The one I have keeps encouraging me to do well in my degree when I ever I speak to him as he still wants me lead a for filling life despite my health trying to get in the way. A nice gp will also be a way in to be sent to a local specialist. 

    Another suggestion is that if you still under a rheumatologist would be to ring the support line when you get ill. Which then means that they cant just brush your symptoms to one side as you can say rag in which should be then be on record. I also found ringing in helped me get seen by a doctor quicker as rang up one time with a flare up but no idea how to treat myself, so I was given an appointment. yeah okay It turned out to be of no help for me but it might have some help for you.      

    Sorry that its a bit of long one and sorry in advance if its not much help, just though I would post in case I could be of some help. Though I hope things start getting better for you soon. =]  

  • With the mouth ulcers etc you should have a look at Behcets syndrome. It can mimic the signs and symptoms of Lupus and can cause Neuro symptoms and rashes. 


    A link to some information about Behcets. 

  • Also look up

    APS/ Hughes Syndrome/ "sticky blood"

  • Have you looked at sjogrens? Another auto immune disease they all tend to overlap each other. Sjogrens attacks the saliva glands as well as other things. I've got lupus, sjogrens, raynaulds and sticky blood. 

    When my eyes, mouth, nose and pancreas have problems I tend to think it's sjogrens rather than lupus as this is more fitting the descriptions, and the pain on my left side is my lung (I have fibrosis) is lupus as well as joint pain. But if you look at both sites they look very similar. The fatigue could be caused by either.

     I don't know if sjogrens would show up in bloods? I'm sure one of the others more knowledgeable will say if I'm wrong. I was tested for sjogrens by a special type of paper being put in your eyes and mouth to see how much fluid it collected.sounds horrible but it didn't hurt.

    It's not an easy road to get a diagnosis of auto immune disease, as many on here will tell you. I myself got diagnosed a few years ago but looking back My problems probably began ten to fifteen years if not more prior to diagnosis and that was only because I had pancreatitis with no explanation of gallstones.

    There are many people on this site that support each other, I find it invaluable and you are not alone, many are still looking for answers. X

  • Hi chris21

    just wanting to pick your brains about sjogrens! Recently my mouth was terribly dry,a couple of days later i developed something that resembled an abcess on the floor of my mouth not overly painful and i have had these before! once id eaten it had disappeared ie popped! yuk!

    Anyway within a few hours the floor of my mouth had swollen up,it looked like i had an extra tongue on the floor of my mouth! Went to the drs as i couldnt swallow properly,he got his wooden stick thingy stuck in my mouth it was that dry!!!

    Prescribed steroids which helped initially but had to hotfoot it to a and e 3days later as it swelled up again! they gave me antibiotics as i explained what had happened and they felt a lump in my salivary gland which i am still awaiting investigation!

    Looking back over 14 yrs tho ,it all originally started in my salivary glands as when i was 38 wks pregnant i developed mumps ,but then 10months later it happened again!

    I also suffered in 2006 with dry mouth and eyes to the extreme, i thought it was hayfever i just kept drinking (water not alcohol!lol!) after a few wks i swelled up and was then referred to an immunologist as the swelling kept returning!

    On odd days i do suffer with swallowing certain foods and my eyes can b really dry,i am awaiting an appointment at maxilliofacial which ive been to b4 regarding my ulcers but came away nothing after a biopsy (not sure if sjogrens was on the list tho.

    Am also suffering with my joints and seem to have terrible burning on the soles of my feet which keeps me awake at night ive ben putting ice packs on them its been that bad some nights!

    Sorry for waffling just a little insight i thought you might be able to help me with or advise when i see the consultant!


  • Hi Bon, not sure what to tell you. It's a bit like a minefield there's all kinds of auto immune diseases. All your symptoms could fit with sjogrens. As it is the salivary glands that 'dry' up. My glands at the back of my neck always swell when I'm tired. The mouth is a weird thing as you feel as though your dribbling but there's no saliva to dribble! Ulcers/spots appear in the mouth like yours. I feel I have something stuck in the back of my throat and sometimes feel my tongue is too big for my mouth 😂 My eyes feel like someone has thrown grit into them as for other areas of the body well...... I haven't been able to have a smear test the last two times as thought I was being split in two and they had to give up!

    Everybody is different and not all have the same problems. Hopefully when you get your appointment they will begin to find what is wrong. I would just ask them the question as to whether your symptoms could possibly fit an auto immune disease and if not what are their thoughts? Most consultants are fairly good in answering your questions and if they start to talk jargon just ask them to explain in lay mans terms.

    As far as I know how you get a diagnosis is by paper being placed in your eyelid to catch water or/and a lip biopsy. I had the paper and although slightly uncomfortable didn't hurt, I don't know much about lip biopsy. Don't know if they can tell by blood tests.

    The site I look on for info is the british sjogrens association.

    If I can answer anything, I'm happy to try and help.


  • Thanks Chris

    I am at the hospital this Friday so fingers crossed!

  • Good luck, hope you get some answers x

  • Sorry you are going through such uncertainty. I well understand how you dread being left high and dry with your flares. However I'm not sure why you are so unconvinced by the diagnosis of Psoriatic Arthritis you were originally given? PsA is just as serious as any other connective tissue disease, including SLE, and your body's resistance to Sulfasalazine and normal bloods correspond with Spondyloarthritis. Many with spondy (PsA is one of this family as you probably know) do not have any sign of inflammation in their blood despite much painful arthritis and other horrible and very broad symptoms ranging from neurological ones to inflammatory bowel disease - not to mention psoriasis. 

    The DMARD treatments such as Sulfasalazine often do not work as well for PsA as they do for RA and Lupus and sufferers have to try the Biologic drugs to get relief. 

    I had a neurologist say much the same to me as your rheumatologist said to you. I felt really hacked off but am waiting to see a rheumatologist as my diagnosis is of RA. I think you need to see a rheumatologist who specialises in spondyloarthritis or better still in PsA. All these diseases can overlap with others such as Sjogrens, Vasculitis and RA. If yours is left effectively untreated then of course you feel rubbish! If I were you I would leave the rheumy behind for someone better.

  • Thank you, I appreciate your feed back, I did have a great rheumatologist who seemed on the ball last year and who I could keep in regular contact with regarding flare ups and any new developments, I started sulfasalazine in October last year she did say it may well be trial and error!

    However she left before Christmas and the new one basically flicked through my notes whilst I was sat in the room ,told me to come off the medication as she thought I was fit and well not needing treatment, she would possibly see me again in 4 months time , my husband was furious ! 

    How any medical professional can make this assumption in 5 mins flicking through notes just looking at blood results is beyond me ,

    I will definitely be looking elsewhere 😊

  • Hi Bon27, 

    I don't have Lupus although it was one of the early rule outs for me. I have been in a similar situation with different Consultants saying different things when my Rheumy went on mat leave ( despite leaving a very detailed synopsis and plan in my notes ). 

    I made a formal complaint to my health board, I didn't personalise it but complained about the lack of continuity in my care and that I had been left without a diagnosis and treatment with worsening symptoms. Also that it wasn't my fault that Consultants couldn't agree! 

    I had a very positive response which led to me seeing another Rheumy and have since been started on biologic drugs. I would urge you to contact PALS if you live in England or the complaints dept of your hospital if you live elsewhere. 

    Good luck and don't give up, the answer is out there somewhere. 

  • Thank you,i do live in England and have a had a brief chat with my gp about my concerns regarding rheumy,i have requested my gp refers me to a specialist consultant luckily shes agreed to after all my results come back !

    Its nice to know im not on my own though,ive had some great feedback on here!

  • Omg yes yes yes!  Know exactly what you mean and wish you all the best xoxo 

  • And you too xx

  • Hello!

    These types of situations are pretty much rote for us autoimmunies.  I've done a whole lot of reading and the gist is lab work can all be "normal"; even though there is a legitimate disease process happening.

    It's a tricksy disease.

    I started requesting a RA panel in 2003.  I looked healthy, height/weight proportionate, no cholesterol I was denied until June of 2015.  I was correct in my theory.

    The first rhumatologist I was referred to gave me a Dx of lupus and Sjogren's and that I've had it a long time.  Then three months later, unbeknownst to me. he said I don't have lupus; I have Sjogren's for sure and probably some underlying connective tissue inflammatory disease.

    If you have the means, get to a real city with a reasearch hospital, and or a lupus clinic.  When I can, I'll be heading to the Mayo clinic.

    I live, eat and breath Hope.

  • Hi Bon27,

    I'm sorry to hear that you are experiencing so much difficulty getting a diagnosis for your symptoms. It may be worth asking your GP to refer you to a rheumatologist who specialises in lupus. If you let me know what area you live in, I can provide you with information about any lupus specialists we know of who are nearby.

  • Thanks Paul that would be a great help , I live in York.

  • Hi Bon27,

    I think that your nearest lupus specialists are in Leeds at the Chapel Allerton hospital. Prof Emery, Dr Edward Vital and Dr Shouvik Dass all specialise in lupus and have clinics there.

  • Many Thanks!

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