Have i got lupus,the most mis diagnosed diseasei

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I really need a honest opinion.

For the last five years my symptoms,have slowly increased.I have coped by doing as much as possible to help myself,but eventually it got to a point where nothing i did helped.So over the five years i went to the gp,i was told ibs etc.

Last april,a year ago i had to stop eating due to pain when eating,i could not eat.A doctor gave me 12 fortisips,because i asked her to.I started buying complan,because it stopped alot of pain on a liquid diet.

I returned to another gp who sent me for a camera top and tail.Gastrisis stomach only found.Sent home ibs,fodmap diet.

No one would let me tell me all my symptoms,they did not give me time to list them.I tried the diet i could not do it because of pain.

I went back and saw another gp.He said i think you have a bowel disorder and i did a stool ibd test,which came back 115,anything over 50,is positive for an ibd.He gave me a prescription for a load of fortisips because i was so thin,and i was refered to a gi by another gp,still no one listened to my list of symptoms.

I saw the gi in september.He gave me a full ct.He was rude and unapproachable,so he did not listen to my symptoms.I did really try to say some of them too.I mentioned my constant mouth ulcers,eyes,and my hip and leg on left side so i never have a full nights sleep.He looked at my eyes and he said i do not know what is wrong with your leg.I had a follow up appointment in 6 weeks for results.In the meantime i felt so ill all the time,nothing i did would help.

When i saw him he said he had found a very swollen pancreas.He said he wanted to do more bloods and a stool sample,to see him in a month.

When i went back he told me i had chronic pancreatitis,signed me off and said it was a dietician and pain management clinic.

I felt i needed monitoring,so i paid for all results including disc and asked my gp to refer me to pancreas specialist.

He wanted to do his own tests.He did and undiagnoised me.My pancreas was within limits and functioning,but he found some water around the heart,just a small amount and water and some thickening in lungs.

So he asked gp to refer me to have this looked at,which has not been done yet.

I looked at my results from th gi,who mis diagnoised me with chronic pancreatitis,and there is a postive anca result with a p-anca pattern,also low white cells,and vitamin d deficiency.My red platelets just in at 150.

I looked about the anca result,i came across lupus and could not believe what i was reading,it was me!

These are my symptoms,tiny mouth ulcers roof of mouth that have never gone,nose ulcers that come and go,pain in abdomen only liquids,severe eye pain swelling,hip,neck ankle,knee,hand knuckle joint pain,severe chest sterum pain,rapid heart,dizziness,raynards,blue lips when cold,migraines,wear factor 50 everyday because reaction to sun,low mood somedays,slurred speech,and of course the postive ana result.

To see a rheumatologist,private will cost,but would be quick.

Does anyone think i have it?

Could this actually be what is wrong ?

I really would be grateful for an opinion from those who have some experience,as i think it is affecting my mental health too,now

                         many thanks to anyone who reads it for your time

3 likes, 12 replies


12 Replies

  • Posted

    Oh Debbie your history sounds just like mine you poor lady. Are you in the UK? 

    1) the IBS is IBD you have Chrohn's or Colitis. The mouth ulcers yes, I had them life long until my Consultant Dr. E. Price put me on Sulfasalzine. Everything vanished overnight. No more ulcers, no IBS, no bleeding from the badl passage. No gastritis now I can eat but the problem is a previous Rheumy had said my bloods were normal I was wasting time etc. So like you I have been through the yes no yes no so many times that last year I went up to UCH in London to prove I had both Lupus, Sjögren's with a negative lip biopsy, that I had severe peripheral neuropathy. I spent 3 days there which was most interesting and the standard of cleanliness and care was beyond anything I have ever seen in any hospital. They proved I have POTS and Ehlers- Danlos too the only thing they omitted was a genome test which is frustrating as I'm not type III However back to you it cerainly sounds like you are quite badly affected. Do you or your family have Psoriasis? This would fit with the IBD? I hope I have at least given you hope and food for thought. May I ask do,you have back problems or pain in the fingers and toes. Do you get numb tingling in your legs or hands. Do you lose hair. Are hypermoblie? Do you have migraines, do you go septic easily. Do you have memory problems, are your feet swollen or fingers swollen. Do you smoke can you tolerate alcohol. Do you have rashes. Do you have hearing loss, itching, hay fever asthma. I'm just flinging ideas at you to help you understand how complex Lupus can be. Do you have cystitis, breathing problems you mention pancreatitis has that been properly investigated? I hope this may help,you to organise your thoughts. Make a list starting from childhood diseases and carry on. Good luck 🍀🍀🍀

    • Posted

      Hello Pam and thankyou so much for your reply.

      I have been tapping on and off all day replying,and then i tapped something and lost it all! So i am starting again.

      I am 47,with four children aged 5,6,7 and 10,and they all have aspegers.So it is full on.

      I live in Peterborough.

      I have the mouth ulcers all the time,i have bleed from the back passage,and as you know unable to eat solid food,only liquids,due to pain.

      I am going to answer your questions but throw in some other stuff too,i could not believe it when i read the symptoms and found the forum.At last i can talk,to people with experience,who will tell me what they think.

      No psoriasis,but ezcema.

      I have back pain,fingers and two knuckle joints on right hand,which the fingers lock and my skin on my hands is dry and sore,tight.The pain in my chest is bad,the sternum is painful,so sensitive to touch,cannot wear a bra,and the ribs hurt too,more on the left side.This is very uncomfortable at night,cannot find a comfortable position,and feel like it is restricting my breathing,so i try to lift my upper chest up to give me room.My neck,spine is painful and very stiff when moving side to side,and i also have very painful quick shooting pains,when moving up and down sometimes.I now have a memory foam topper on my bed which has helped my left hip and left leg pain which wakes me throughout the night.I put a pillow between my legs cannot take one knee resting on the other.

      I have numb tingling in my legs and hands,but my legs also feel like they are not mine,and feel like they are shaking too.They feel like they are going to go sometimes.

      I lost so much hair ,i was picking handfuls of it up all around the house,and filling the plug when washing it.I asked my partner to keep checking my hair for bald patches.Near that time i developed loads of really itchy sores in the back of my head,and had to put cream on my scalp to soothe it.I also had an allergic reaction to my hair dye blisters painful sores,and my ears swelled,so i can no longer dye my hair.

      I do not think i am hypermobile.

      I have had migraines for years.I have a prescription from the doctors,sumatriptan 100mg.I used to have 50mg but it was increased as my migraines increased.I have 12 tablets a month.On the 13th of january 2013,i miscarried,and bled alot,i had a seizure,and my migraines have been worse since then.I also had a seizure a few years before this when i had a migraine,and had got very cold.I am mentioning this because,i have read sometimes lupus can cause a fit.

      I do not know if i go septic easily,but when i have the nose uicers,they smell awful like cheese,my nose also runs constantly.

      I did smoke but now i vapour.I do not drink anymore,have not for five years,my son developed epilepsy,and i wanted to make sure i was always on the ball.When i did drink i did not tolerate it well,could not drink much.

      I do have memory problems,but i am really bothered about the slurred speech and not being able to pronounce words properly,its like i have had a stroke,it feels like a lisp.

      My hands and feet do swell,most days i change to flip flops in the house,because my feet are hot and my legs are so heavy.My hands do swell but i also drop things alot and struggle with movements like opening packets.

      Everyday my eyes are swollen when i wake up,the eyelids themselves are swollen and they are puffy and swollen with fluid underneath.This gets a bit better as the day goes on,but ther is also white hard lumps on the very corner on the outside of the eye near the bridge of my nose,they also itch and swell,but not everyday.My eyes water constantly all day long,i have to just keep dabing them with a tissue,and always wear sunglasses.

      I do not have rashes,but my skin itches alot,on my tummy and back,the skin on my hands is very dry and tight.

      My hearing does feel worse but i get times when i feel like i can not hear at all on my left side,but it goes.My eyesight is now that i have to have two pairs of glasses,when i had none before,and this feels like it happened quite quickly.

      I do not have cystitis.

      I do have breathing problems,i feel like i can not get a proper breath,and pain in chest.When i did eat solid food it felt like i could not breathe,everything squashed.My heart goes so rapid sometimes when i am sitting in the chair sometimes,that my head then goes funny,feel like im going to passout,then it kicks back in,and i usually have a headache after,i do not like this,it scares me,and it has happened a few times lately.

      I get really cross with myself when i go out to town once a week,because i always get a rapid heart,weak legs,short of breath,my legs feel like lead,i can not walk at a normal speed.I end up sort of shuffling.I will not give up and go home,i think someone will pick me up,if i passout.I end up paying for it when i get home,weak shaky,exhausted,and i do not go out for long.

      The chronic pancreatitis was undiagnosed,at addenbrookes hospital,by a pancreas specialist which i asked to see.His results were small pericardial effusion,bronchial wall thickening and centrilobular nodularity in the apex of the right lower lobe.Mucus plugging of subsegmental bronchi in the left lower lobe.Stable hepatic cysts.

      Conclusion,pericardial effusion,bronchiolitis/small airways disease.

      Thankyou so much for your support,do you think that is lupus causing all this?If i was going to try and invent something wrong with myself i am sure i could find a easier one than this,to spell and say as well.

      I just want to feel better and eat again,i am stuck now,i have tried everything,I have felt like i am going mad.Thats why i posted on this forum,i need help,experience,and honesty.Thankyou.

  • Posted

    It tooks a few years for my diagnosis to be correct. Lupus is often mask by other chronic conditions. I have quite a few of your symptoms but only when I went to the Rheum. doctor was I correctly told why I was suffering so much.  I have to take Vit D caps, my joints swell badly esp in my legs, feet and hands. I walk like a drunk. mis stepping, staggering a lot.  I can not say what to do but I am glad I went to the specialist for now at least I have an answer. I can do research on it and any med I am subscribed. I even read abbok by a Doctor with Lupus called My First Year With Lupus bought it at Amazon.  Take care. I wish you the best debbie. Hugs.
    • Posted

      HI there,thankyou for your reply.Thats what i was hoping for,some sense of it all.You are so right about getting an answer,then you know why,things are happening.I think i am going to have go private and see a rheum doctor,i just want to see what opinons are on here,to give me that bit of confidence.I sort of shuffle,i can not get a speed up and can not keep up with anyone.

      I am so one for helping yourself,and would educate myself as much as possible with books etc.

      I keep in touch and thankyou for your support.

  • Posted

    Hi Debbiei am so sorry you have been through such an awful diagnosis experience. Unfortunately this is not unusual where lupus is concerned. It took ababout 3 years for mine to be finally diagnosed. I went through a lot of the issues you have.

    It sounds to me like lupus. My advice would be to find the best rheumatologist you can in your area. Or ask Lupus UK for their advice.

    Good luck.


    • Posted

      Hi Valerie,thankyou for your reply.

      For you to say you think it sounds like it,actually felt like someone was listening,at last.Of course i do not want it,but if i have got surely its better to know and start dealing with the things that can be helped with.

      I will have an answer,living like this is very difficult.If i can get some medication to help with some of the things,it will be so much better than this,thanks again i will be in touch.Do you know what its real weird one isnt it the symptoms just go on and on,it such a long one.

      I think this makes it difficult to talk to doctors about,because this requires time.

      Thankyou again Debs

    • Posted

      Hi Debbie

      Thanks for your message.

      It is really a relief when you know for sure what is wrong. I found I could start accepting the symptoms and deal with it. Be careful when it comes to medication. Most consultants want to give you everything which actually doesn't help long term as they all have side effects which can be worse than the original pain.

      I found that a good strong painkiller like codeine is better than the tranquilliser they try to give you which makes me dizzy and unable to think straight. I have to take warfarin as I also have Hughes Syndrome which is sticky blood really. I have had 9 blood clots and two haematoma so it is live saving medication for me.

      I hope you get good advice and have a supportive network of friends and family. Good luck.


    • Posted

      Hi Valerie,

                    I completely agree with you about the drugs.I do not want to be on lots,but i think some of the problems may need medication,to actually get better.I am more for relaxtion techniques,self help,positive thinking,totally,but like the pain through trying to eat and bowel issues,has only been less on fortisps and a diet with me using the nutribullet blender,and of course other things that will just not clear up,like the mouth uclers.I think if i can help some of the stuff that is going,i can tolerate the lesser stuff,maybe look for something else to help with that.

      I have read about the sticky blood test,and i think looking at the blood tests that i have it could be one of the ones that was negative.

      The gi i saw at Peterborough,was looking for autoimmune pancreatitis,because the ct showed bulky pancreas throughout,and the radiologist suggested it in his report.

      In the gi notes is says that he was going to test for serum amylase,faecal elastase,vascultic screen and IgG4.

      Faecal elastase was very low at 66.

      Antinuclear Ab (Hep 2) Negative

      Smooth muscle antibodies Negative

      Mitochondrial Abs Negative

      Gastric Parietal cell Abs Negative

      Reticulin antibodies Negative

      LKM antibodies Negative

      dsDNA Ab (ELISA) o.3       

      Anti neut.cytopasmic Ab Positive

      ANCA pattern Perinuclear pattern (P-ANCA)

      ANCA:MPO Abs 0.2

      ANCA;PR3 Abs 1.2

      Both of these were in range.

      My IgG 1,2,3,and 4 were normal

      These negative results threw me ,but then i found out the positive ANCA is in 97% of people with lupus,and the other tests are for vasculitic screen and pancreatitis.

      Maybe if i had some of the right blood tests for lupus,might be able to unpick it better.Or do you think the positive ANCA is all that is done?Or is all the negatives showing i do not have it?

      I would value your opinion,if you know. 

                      many thanks for your time,it is helping me,to talk about it.

      I am not really talking about it,because it has been going on for so long,i am not sure if people think i am making it all up.So i just do not talk about it.Everyone knows i can not eat solids,and they see me looking ill.But it has become a bit normal now.

      My periods stopped in December 2014,they just stopped.I do not think it is the menopause.It all just seems such a mess.

                                    many thanks Deb

    • Posted

      Hi Debbie

      Thanks for your message.

      The medication problem is a big one. It is obviously a good idea to become stronger to be able to deal with the day to day. I think the mouth ulcers could be treated and I also think the digestive problems can bee medicated easily. I am not sure why your doctors haven't suggested something for those.

      I don't know how to interpret the blood results. For lupus it is always the ANA test that is the most important but this often comes back negative even if you have it so it is difficult.

      It seems to me your main problem is the digestive one. I would guess that if you have lost weight and are very underweight this could be the reason your periods have stopped. I think I would want to know if there are physical reasons why you can't eat solids and to deal with those first because you need to be strong enough to fight all the other issues.

      The problem with being so absorbed with the symptoms etc., - which is what happens when you don't know what is going on - is that other people get a bit fed up with hearing about it - especially if the don't know how to help. It is also frustrating to not be able to get to the bottom of the problem and start feeling better and fit people can't understand that. You will find that talking to people on a site like this where everyone is kind of in the same position is really helpful. When I was diagnosed in 2001 I was lucky to find a medical site where people were really helpful. In fact one of them has become a close friend- even though she lives in America - and we regularly speak on the phone. We both understand how the other one is feeling and we often have the same symptoms and are able to help each other.

      Unfortunately doctors usually only want to give you medication because that is what they are trained to do. I have found I have had to find my own way - with the essential drugs that stop me actually dying - with yoga and gentle exercise sometimes massage and sometimes just being in a peaceful place and not doing very much at all. It is sometimes the only way to give in to the exhaustion and pain and just try to gather strength to have some kind of happy life.

      I hope this helps.

      Best wishes


    • Posted

      Hi Valerie

                    Just wanted to give you a quick update.

      I saw a rheumatologist today private appointment.

      I took all my blood results,and list of all my symptoms.

      He really listened to everything.He said the positive anca result did not show lupus because i had a negative pr3 and mpo.

      He then examined me,and pushed on points of my body which caused pain.

      He then said i am 100% convinced you have fibromalgia.

      He took all my notes and test results and i have made an appointment with him in two weeks,which he asked me to do,after he had read everything,and spoke to the consultant who mis diagnoised me with chronic pancreatitis.

      I think i was convinced it was lupus and if i am honest,i still do think it,but i have read a little bit about it,going to read more,and it does explain the pain when trying to eat.Its just the ct results showing water heart and lungs,but i think i can do that too.

      He has everything to read,and i need to trust what he said.

      I would be grateful for your thoughts as my partner and i have been bouncing thoughts off each other.

             Thankyou Debbie

  • Posted

    Hi Debbie

    Your visit to the haematologist sounds very typical.  Some are really good on following up on the blood tests for lupus - it is not conclusive that you do not have lupus if the blood test is negative - it is often negative.  In fact, in my case, it was negative for about 8 years but the first consultant I saw at St Thomas Hospital in London, Graham Hughes, also tested me for Sjogrens Syndrome, which is associated with lupus.  I proved positive for Sjogrens and negative for lupus at that time.  He was convinced I had lupus and treated me appropriately and I am very grateful for that diagnosis because it stopped all the other tests and possibilities which can be so tiring.  

    I have also been diagnosed with 100% fibromyalgia but be careful about accepting this as the reason why you have so many different problems.  Once this is registered on your records, in my experience, if you are admitted to hospital, as I have been on several occasions in the past two years, for attacks of extreme pain, in my ribcage and abdomen, the doctors will assume it is fibromyalgia.  One A&E consultant told me that it is a condition that they just use to stop any other investigations and it is a bit of a cop out.  I would not accept the fact that I was in so much pain - almost like a heart attack - so often and that it was fibromyalgia that is a tissue disease.  When I stuck out for further investigations, including a CT scan, it showed that I had a lung problem and a diseased gall bladder that was more than likely causing the pain.  I am about to have my gall bladder removed which I am hoping will stop these attacks.

    It is hard having lupus.  No one really wants to admit that you have it and when you are diagnosed there are no cures, just medicines which aren't always helpful as they have their own side effects.  It is really up to you to find a good way to deal with the different symptoms that you have and find a healthy way to eat and keep fit.  Because we feel so weak and our muscles and joints hurt it is difficult to keep as healthy as we need to be.  I found yoga good for relaxing and expanding the muscles and joints.  Swimming is good too because it allows you to exercise gently.  I also like cycling because my feet and legs hurt so much that it takes away the strain of walking.  With regards to food, I have found I am now intolerant to many, many foods.  I avoid potatoes, pasta and ordinary bread.  I make my own sour dough or soda bread.  I cannot eat cereal.  I find ordinary milk and yoghurt give me a stomach ache so I am now drinking coconut milk and I make a smoothie with it with fresh berries.  As I have continual diarrhea, I avoid too many fruits and fibre. 

    It sounds like a nightmare doesn't it!  I have just developed a way of living with this horrible disease over a period of nearly 15 years that works for me.  I am in pain every day and I feel unwell every day but I don't let it stop me doing anything I really want to do, I just sometimes have to change what I do and make sure I REST.  Rest is the key.  Don't fight the tiredness, you will only feel worse.

    I hope I have helped.

    Good luck


  • Posted

    We both think the same,that it is still lupus.Just because of all the inflammation,that has showed,the water around the heart and water and thickening to the lungs.The inflammation in the stool test and the elastase,bulky pancreas but within normal limits,surely that alone shows,something is happening internal.

    What you describe the pain in your chest,is what i have had when eating solid food,and the diarrohea unbelieveable,while would anyone stop eating if it was not so bad,they could not take another day of it.The nutibullet has been my lifesaver,as has liquid food.It seems anything that requires,the stomach and bowel to work,swell is too much,where liquid can slip through not cause pain and gentle through my system.

    I gave up bread cereals etc years ago,and had a diet of chicken and salad,but then slowly,slowly could not take this.A liquid diet is all that works,and still i have trips to the toilet 5/6 times a day,and pain,but it is not on the level it was so i can function.

    I loved my yoga and i worked to advance level,but after my last baby five years ago,is when my health really went downhill,so i have not done any,however,when he was testing me yesterday,i seemed to be still quite flexible to my surprise.So i think i should start gently trying again.

    I am my own worst enemy for not giving in,and i need to.

    My sister is a reki healer,and into meditation too,i am going to go down that route 100%

    What i am hoping for is that he has took away with him all results,and my list of symptoms which i wrote.He said he wanted to look at it all and talk to the other doctor who mis diagnoised me with chronic pancreatitis,that he is then going to come back with maybe lupus,so the inflammation can be kept an eye on.

    But he said it was not because he would expect to see,anemia,raised esr and crp.

    I find it odd if you have to have over 4 of the 11,taking them away i still have 5.

    I will have to see what he says in two weeks,but i think i have come to a dead end now,and this is going to cost me alot of money,because its private.

    Thankyou for your support,i know some days are just really bad 

                                           Debbie x


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