Occipital neuralgia, memory fog, fatigue, positive biopsy for SLE - Rheumy says it's not SLE

[MadgeM]

Hi all, I have been suffering for 4.5 yrs now. Had extreme rashes caused by high levels of leukocytes - biopsy of active papule came back as SLE, severe occipital neuralgia (cluster headaches), extreme fatigue, short-term memory loss, forgetting everyday words, sleep for 18 hours at a time, photosensitive, huge weight gain, "hump" on my back (before weight gain!), muscles spasms, severe balance issues, my blood is full of insulin which causes me to black out if really bad.......you name it my body's got it! This ALL started about 4.5 yrs ago. Was sent to a dermatologist who biopsied an active papule during a flair - positive for SLE. HOWEVER dermatologist said he wasn't convinced, told me he thinks Lichen Planus!!! and wanted to send me for 3 light box treatments a week. My GP said No as I would have been hospitalised. GP has put me on a lifetime prescription of extremely strong anti-histamines to stop white cell over production - has calmed rashes but they still come back albeit in a smaller dose when I have a "flair". Dermatologist blocked me from seeing a rheumatologist (my GP told me that) I asked her to re-send request. Walked into the rheumy's office and his first words to me were "I've been asked to rule out LUPUS". My heart sank. I said that if he did I hoped he'd tell me what I DID have. Nope - nothing. Said as I was 50 was probably the menopause! I am still every 28 days and no sign of such! I complained about dermatologist I finally got a mtg 10 months later! during which the dermatologist stated that "...back home in Germany I am a bit of an expert in immunological diseases and I felt I could rule out LUPUS" I pointed out, with respect, that within NHS in the UK he was employed as a dermatologist not a rheumy. Upshot of complaint is, I have been authorised to contact my GP and get a referral to one of the 3 lupus experts within Scotland. Couldn't get an appointment with my GP for this referral request for 4.5 weeks but at least I am booked in. I have been diagnosed with separate things of migraines (it's not), occipital neuralgia (it is), osteoarthritis in my hands, calcium "stones" in my ear (it's not), menopause (it's not), nail bed capillary damage (no reasons provided to me of why it is there) and finally, my GP stated she was concerned that the Consultants will put ALL my symptoms down to depression and "imagination"! Seriously! I pointed to my wine coloured scars all over my arms and legs where the leukocyte rashes have been and said there was no way I was imagining that! Additionally, I have had to call her to my home twice recently to inject me after 3 days and nights of suicide headaches - I was practically feral with the pain. I am now suffering from almost daily palpitations which can and do waken me from sleep - not stressed. My symptoms are getting worse and I feel there is no-one taking me seriously nor helping me - the NHS is making me feel like a nuisance to them - I really feel there is something flagged in my notes saying not to help me. Has anyone else found that no-one will look at the symptoms as a whole, all the consultants look at one thing only?

[Paul_Howard Partner LUPUS UK]

Hi MadgeM ,

I'm sorry to hear that you have been experiencing so much trouble trying to get a diagnosis for your symptoms. I am glad to hear that you are looking at getting a referral to one of the lupus specialist consultants in Scotland. I hope that you won't have to wait too long. Hopefully they will be able to help you. Please keep us updated with how you are getting on.

[Hidden]

Hi. I live in Scotland too and have had a lot of trouble getting diagnosed with primary Sjogrens, having been previously diagnosed and treated for RA, then undiagnosed! I had quite an early menopause at 45, 8 years ago, and was fortunate to have certain things such as inflammation show up in my blood.

Even so I've had new GPs tell me I have health anxiety without reading my long notes properly, and have had stroke like episodes dismissed by a neurologist as "functional", have had a Fife based rheumatologist who supposedly has a special interest in Sjogrens, say that I categorically do not have Sjogrens, Lupus or Scleroderma, earlier this year.

I had an eminent dermatology professor take biopsies from the V of my neck for what he thought was discoid lupus or Vasculitis - turned out to be eczema! Then he diagnosed a severe follicular rash as Scurvy - and this one has stuck to my list of diagnosed conditions. Seriously???!

Then, in spring of this year I moved to another part of East Scotland and was referred to a new rheumy and neuro in a new hospital - where they hadn't got all my hospital notes - so started afresh.

Suddenly my blood showed up positive for ANA with a pattern more associated with Scleroderma. The new rheumatologist advised me to have a lip biopsy which I did and this showed very positive, and bingo! - I have a very decisive diagnosis of a connective tissue disease after all.

I tell you all this to convey just how wrong some doctors can be. I have learned to trust my instincts now - so please trust yours and seek a Lupus expert. If your ANA is negative you probably won't get a diagnosis in Scotland as they are very adamant about the EULAR criteria for Lupus here - but I'm proof that our immunology can change. Mind you I was still on steroids last year when my autoantibodies were tested and was very clear of steroids when it all turned positive this summer.

But seeing as your skin biopsy was positive then Lupus seems a strong contender still. But there are other autoimmune diseases that can cause migraine and rashes or you might have an overlap of connective tissue diseases. Whatever you do just don't give up!

[Hippykar]

Madge, I feel for you. I'm in the same situation but maybe further tests will reveal things for you x

[Freckle1000]

Yes. I've had an SLE diagnosis for 33 years and I still get the - Its anxiety and depression - bull****

Get yourself to a good Lupus Specialist AND a Generalist Specialist and a Neurologist. Please don't leave out a good General specialist. (one with a multiple degree is always handy) Sometimes I think they are more usefull than most other Doctors. Forget about Rheumatologists right now. Personally I don't have much time for them.

There is a good deal of discrimination and sexism out there for SLE patients with a diagnosis - let alone a potential pre-diagnosis. Don't be put off by the bigotry escalating as you escalate your justified demand for treatment.

Scapegoating the patient when Doctors are lazy and clueless does happen, and it happens much more than you would expect in this day and age. A real vortex of nasty attitudes can occur. How dare she contradict our arrogant stupidity.

I was bullied out of my last GP practice for upping demands for help after being called hysterical by both them and my Professor Rheumatologist. (I was only hurtling toward renal failure)

p.s. Also - this may seem odd. But please make sure someone checks out your B12 levels. I know this sounds a little lame, but some years ago my SLE attacked the lining of my stomach and this destroyed my ability to absorb B12. This can lead to peripheral neurological damage.

Fatigue, headaches, balance issues, graduating to palpitations - sounds horribly horribly familiar. Might be a long shot, but it wouldn't hurt to get it checked.

Also spooky ditto ? At this same (B12 deficiency) time I was actually misdiagnosed with early onset menopause and when I asked "what about the period I'm having now" they said it was a last gasp ovulation. I was actually sucked into this one for a little while as I was put on strong HRT that stopped what would have been healthy periods. Glad you have more wits about you than I did. I still feel like a real moron over that one.

xox

[MadgeM]

Hi All, apologies for the gap in information......my Dad was terminally ill with cancer and died just after Xmas.........my health, quite rightly, took a back seat. I called my GP a few days ago as I had not received a LUPUS expert referral, request was originally supposed to have gone through at beginning of October from my GP.......to say I was shocked by her answer is an understatement. She said that the referral to Dr A in Edinburgh (LUPUS) had to come from the dermatologist whom I had a formal complaint against (see my original post), this is in contraduiction to the Minutes of that meeting which state the GP would make the referral. He apparently requested a consultation (but who am I to say what was said between the two - remember, had the expert confirmed I have LUPUS then where would that leave the dermatologist and the NHS Trust?) but the GP advised that Dr A had refused my request because my blood results didn't fit. However, GP stated there was at least one outstanding blood test I hadn't yet had. I asked GP why I have a positive biopsy - STILL no answer from anyone as to how this can be wrong, I then asked what I do now, GP advised that, with my permission, she would speak to the other GPs in the surgery to see if anyone could "....work it out". Having had yet another flare-up over the past 4 days I am at the end of my tether. GP has been watching what is going on with me as she knew my father had died (he's with a different practice!) and knew I'd "been stressed". I almost NEVER get a flareup when I am stressed and have said this from the start. GP advised that no other LUPUS expert would agree to see me. Not only is my health suffering (ongoing hellish symptoms and I feel I may be getting depressed), my worklife, social life (split from my partner of 3 years due to me NEVER being well), everything is suffering. I sold my house with a view to buying nearer my parents in 2015. I then got the positive LUPUS biopsy diagnosis - knocked back for every mortgage I tried to get. My house "profit" monies have now gone on extortionate private rent. The Council won't help as they say I don't have full confirmation of a disability so would not get on their housing list. I am truly in limbo. I had expected the LUPUS expert to either confirm or definitively rule out LUPUS and, if ruled out, then perhaps I could be seen again for someone to finally diagnose what exactly is wrong with me. Does anyone know where I can get the help I need. I am truly lost.