Thoughts please on my list of symptoms

I am new here and so far undiagnosed. I am just feeling my way in this surreal medical world. This is going to be a long post so if someone can bear with me long enough to give some advice it would be much appreciated.

First, some history...I was diagnosed in 2004 with severe ITP (platelet level was 5). I was treated with prednisone for 2 years plus a bit before this returned to normal. Increasingly over the years since then I have been feeling just unwell and fatigued. I would have days here and there where I would feel what I called 'dropsy'. (this has nothing to do with the medical condition by this name, it's just that my arms and legs would lose strength and 'drop' and it was the only way I could describe it to my husband!) This has been happening more and more frequently and got to the point where my husband would pester me about going to get checked out. I just passed it off as tiredness (I have had 4 children in the last 8 years and that can make a person tired - surely all mums felt like this!!) About 4 years ago I had a weird thing happen with my eyes, one pupil would dilate while the other stayed normal. I had to keep my eyes closed till it passed, sometimes this was up to ten minutes but it would happen pretty much every day. I went to the optometrist and he said there was nothing wrong with my eye but he could see that the blood flow was restricted and to go to a GP (busy mum never did). When I was pregnant with my last I started getting weird adrenaline rush attacks out of the blue, my heart would thump I would go all sweaty and faint. My OB put me on beta blockers because "things like this happen when your pregnant". My baby is 16 months old and I came off the beta blockers but it is still happening though not as bad as it used to.

Last November...We moved house. It was one of those rushed moves 'all in a day style' on a Friday. The following Monday I had this terrible pain down below. I thought I had pulled a pelvic floor muscle during the move. I could barely walk, the pain was extreme on the right side. After a day and a half of this the pain subsided and settled as a dull pain in my groin on the same side. Never another thought until the Friday of the same week I woke at 5am from a deep sleep feeling like I was going to vomit. I rushed to the toilet and sat there for 5 minutes waiting for it to happen but nothing and after half an hour it subsided to just a strong nausea feeling (which I still have 10 months later). I went to the GP because it was a bit unusual. He suggested grumbling appendicitis, if it doesn't settle down in three days come back. In three days there was no difference so went back but had to see a different GP at the same practice. She immediately did blood and urine tests which showed up a UTI somewhere (but I had no UTI symptoms - no burning or difficulty urinating etc) and 1+ protein. She put me on a course of antibiotics which did nothing. She next checked my thyroid etc and everything was fine except a slightly elevated parathyroid with no obvious cause.

Over the months I have had blood test after blood test and urine test after urine test, mostly showing nothing significant. The UTI has disappeared but the protein has been intermittently absent or trace over about 6 tests (including a 24 hour collection). There has also been a consistently low WCC and Neutrophil count. The pain has evolved, still in the groin but spreading upwards up my right side to just at the base of my rib cage (usually just a dull achy pain) and in the last two months I have been getting terrible stabbing attack pain in my right rib cage sort of behind my right breast ( so bad I can barely breath when it hits). With all of this the fatigue has got worse, some days I cannot get out of my chair I am too weak. Baby brain from the last baby has not gone away like it should have, I cannot be relied on to remember anything (brain fog?) I have developed a slight stutter and am always getting my words mixed up. I get times where I am dizzy and 'jet lagged' and feel like I'm going to faint. I have a bumpy hives rash that comes just below my elbows. It used to come on my knees but it gradually changed in to elbows (?). Each time it comes it is slightly bigger than the last time and it comes every couple of months lasting about 3 weeks. I get swollen hands at night, sometimes when I get up in the morning I can barely move them.

I had my appendix out in April in the hopes that it would magically fix my pain issue. No luck. I have since been tested for all sorts of things (coeliac, crohn's, UC, allergies, etc) everything is coming back normal. Two weeks ago I had all the tests done for lupus. Everything came back negative or normal except for the ANA which was positive at 1:80 speckled. The doctor ruled out lupus based on the fact that it was too low and there were no other blood manifestations. I had a gastroscopy done this past weekend which showed duodenitis with no obvious cause.

I am not entirely convinced!!

I know this an extremely long post but I wanted to get thoughts from people who have lupus to know whether to accept the doctors decision and look into other things or to go back and push this point. Does it sound like lupus or not???

Help please...

14 Replies

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  • And forgot to include lymphadenopathy. When the surgeon did my appendectomy he also did diagnostic laparoscopy and found the groin lymph nodes were slightly enlarged. Nothing else out of place. The lymph nodes in my neck intermittently become sore and hard without getting a sore throat or anything else and sometimes the skin directly over the area is extremely itchy with no rash.

    Endometriosis, ovarian cysts, gallbladder problems have been ruled out. Kidney and liver function tests all normal (slightly fatty liver).

  • Hi 1985 mum, reads like you've had a lot of ongoing symptoms to deal with. Are you under the care of a Rheumatologist or Haematologist? Unfortunately it can take a lot of testing before Lupus is detected as can lay dormant. Regular blood tests should uncover the mysteries of your symptoms. I'm not a med pro so I wouldn't like to diagnose your symptoms as Lupus. There are a lot of autoimmune illnesses that affect our systems so best to continue with medical care, write & refer symptoms so the right results are given & solutions are offered. Eating healthily, meditating, taking care of self (giving self time out to relax) & taking a no of meds (for last 2yrs) has helped me deal with the pain. I pray you have support during difficult times. Raising 4 children with your ongoing symptoms is no easy task. Listen to your body & pls continue to request pro care. When my Lupus became active, I thought I had flu & chest infections (GPs diagnosis) but I had Pneumonia & ended up in hospital for 3 wks. You may have to be more assertive to demand the care you need. Research any meds or possible diagnosis. We can't just rely on med pros, we have to empower ourselves by taking some control over our lifestyles. Life stresses can strain our bodies so we need to find positive coping strategies that work for us as individuals. Glad you found us. Pls try to stay positive! best wishes to you!

  • Thank you magSLE. I have so far been seen by 3 GPs, a gastro, an endo, a haemo, a colorectal surgeon and a specialist radiologist. All are scratching their heads!! None of them have suggested referring me to a rheumy yet. If they do I wonder if anyone knows a good lupus doctor in Melbourne? But what I have noticed is that none of them is interested in taking the list of symptoms as one whole but rather treating them all as separate instances and concentrating on their specialist area. That's why I'm just after a bit of advice whether it is worth pushing to get lupus looked at when there is very little blood manifestation with antibodies etc.

    And yes I try my best to be positive, I have an extremely supportive husband.

  • Hi, at the moment I'm under medical investigation. I had minor Gastro surgery in June, after requesting the results, I only got the negative results last wk. At least other options can be looked at now. I can relate to the not knowing can cause distress esp when the symptoms creep up & cause pain. Hopefully, another on this forum has had the same symptoms & can advise you. Great to read you have a supportive husband, the whole thing is confusing enough.

  • Hi 1985mum

    What a battle with health problems you are having as well as bringing up four kids. No easy task!.

    As your ANA came back positive and speckled you need to push for a Rheumy referral as it shows something is going on . It's not specific for Lupus but shows you may have something auto- immune wrong. There are many different illnesses in this category and the Rheumy will do specialist blood tests to try to give a diagnosis and treatment.could well explain your different symptoms.

    Good luck and keep us postedX

  • Also, great idea asking for a Lupus doctor in Melbourne info. This as a post topic might help you get details quicker. I'm in London England so I don't have those answers for you

  • Hi 1985mum,

    Welcome the the community here on HealthUnlocked.

    Would you like one of our free information packs? Just let me know your address by either sending me a private message or an email and i will pop one in the post for you. hayley@lupusuk.org.uk

    Best wishes,

    Hayley

    LUPUS UK

  • Thanks misty14, that information is helpful. Thanks for taking the time to read and reply.

  • I would say definitely push for a rheumatologist referral. It may not be lupus but there are other autoimmune things it could be. Have you been tested for antiphospholipid syndrome? They may have ruled it out because you have four kids, but I have three and I have it! Confusingly one of the tests is Lupus Anticoagulant, but it is nothing to do with lupus! Write everything down, no matter how small and bullet point your history. Good luck xx

  • minnime63, I have had all my immunoglobulins tested. Don't know if this is what you mean? Nobody has ever suggested that syndrome to me. Looks like I need to do some more research!!

  • In addition to the suggestions to see a rheumatologist perhaps an appointment with a neurologist to rule out brain related issues. Some of your symptoms might be unrelated to each other, as what turned out for me. ...your unequal pupils, 'dropsy' feeling, and confusion seem concerning to me. As I also am not a medical person I wouldn't presume to suggest a diagnosis. Good luck, the medical world is confusing.

  • I was diagnosed after a case of severe ITP as well (count 1). Unlike you, all my blood work kept coming back positive. I also have days like you say drop arms and legs....just a lack of energy. I am back on steroids at the minute because two lupus drugs not agreed with me. If you feel something is wrong keep fighting. I wish you luck.

  • Thank you everyone for your replies. This has given me the little extra confidence boost I need to push for a diagnosis. I just didn't know whether I would be justified asking to see a rheumy or whether I am just being over-concerned.

  • Just a minor update for those who took the time to reply to my post...On friday I saw my gp and asked him for a referral to a rheumy. He argued that I didn't need one because there was no evidence that I had lupus. He said he would need to see blood evidence and kidney involvement before considering lupus!!! I wasn't happy and in the end demanded the referral. I'm not normally an assertive person so a big thing for me!

    I saw my colorectal surgeon today and I asked his opinion (not his area of expertise I know) and he said it was sensible to follow up with a rheumy based on clinical evidence. I was relieved to hear him say that, so it's not just my over concerned mind.

    Another thing that happened yesterday...I have never had butterfly rash but yesterday I was outside for a couple of hours, it was 25C sunny day and when I came in I noticed I had a distinct butterfly shaped blush across my nose and cheeks. More evidence?

    I'm also taking advice and starting a new thread to try to find a good lupus rheumy in melbourne...I tried to find an aussie lupus forum to ask this question but no luck.

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