I have been having investigations for ANCA Vasculitis for the past 7 months, but been having ongoing health problems for the past 10 + years. (Untreated)
I was referred by my GP to a Vasculitis Specialist in Birmingham Queen Elizabeth hospital but yesterday's diagnosis of SLE was quite a shock.
My symptom list is exhaustive, & most of it tied in with Vasculitis, but what confuses me the most is I was tested for lupus to begin with. & all of my results were overlooked.
I paid for my extensive blood tests privately as my GP was neglectful, I was denied the lupus screening tests & decided to go ahead by myself. As I was sick & tired of feeling so poorly
I've had a positive ANA for 10 years & my doctor said it was nothing to worry about. My WBC has always been extremely low
Recent bloods from Feb 2017 were ANA Positive with speckled pattern titre 1.80
Positive Anti Ds DNA
Moderate/positive Anticardiolipin
I will share my first post that I put on on Vasculitis UK as I think some of you will understand my results more than I do.
So now I have SLE I'm due to see my GP on Monday the 5th August.
the Vasculitis specialist yesterday suggested that I should start treatment of Hydroxychloroquine.
Through out my whole ordeal with procedures & tests I've had no treatment. Just got by with paracetamol & GORD PPI's.
it's been an exhausting journey but I feel lucky to have a diagnosis its been a very long journey for me.. despite the 10 years of constant battles with my GP demanding for blood tests, being ignored & screaming to be heard, being denied of any help what so ever I spent the best years of my life suffering. No medication, no referrals to a rheumatologist, no scans, x rays. Just antibiotics.. that had no effect apart from hurting my tummy more
I had a gastroscopy on the 2nd August for GORD & excessive Gastric reflux, Stomach & intestinal issues also issues with my large bowel & unable to eat solid food without vomiting. Even drinking water hurt, So I am on a liquid diet as I am struggling with eating. I became full after a few bites & couldn't stomach anymore, I have lost so much weight & in a lot of pain when it comes to eating. It radiates from under my left rib cage and around to my back & had a dull ache in my left shoulder, I also get spasms in my stomach, really loud gurgling sounds & my stools have been different, orange with stringy mucus.
(Sorry it's disgusting)
I'm waking up at night chocking & unable to swallow, I've had GORD for 14 years was left untreated for many years & for the last 2 years I've been taking lansoprazol 30mg. Now 60mg due to the amount of acid. Feels like I have a lump in my throat, it's very distressing & painful I've had Dental issues with entire tooth erosion, restoration work to build up my teeth, TMD, multiple tooth abscesses. Erupted Wisdom teeth, throat lesions & now recently I have a large brown pigmentation patch on the surface of my mouth just where the main vein is under my tongue.
I'm waiting to hear from the oral facial surgeon for skin Biopsy.
I couldn't go through with the gastroscopy in the end, I had a terrible panic attack I was standardly sedated & had throat spray but I didn't react well & I just kept gagging, I was held down but I kept pulling the tube out, it took 6 goes before the endoscopist abandoned the procedure due to the safety of myself & the staff.. it was a terrible experience.
I was due to have Biopsies taken, but now my GP has to book it in at my hospital in Cheltenham & I need to be put under General anaesthetic as it will not go ahead again with just sedation & throat spray.
Other symptoms
Weight loss
Extreme fatigue
Skin rashes, multiple lesions on limbs
Lesion Ulceration on arms & legs
Joint AGONY knees hips shoulders & now elbows
I also have hyper-mobility in all of my joints.
Feel sick all the time
Asthma
Headaches /migraine
Chronic sinusitis
Tiny Multiple lung granulomas
Protein in urine
Night sweats very bad
Swollen legs & pain when walking eases with rest
DVT Doppler test result 860! Couldn't find the clot, but ended up having a suspected TIA.
Cardiac first degree heart block, episodes of AF resting heart rate is always above 120.. rapid heart palpations
Numbness in hands & feet big toe completely numb now
hair Loss & thinning doesn't grow
Metallic taste in my mouth like I've been sucking on a 2pence piece.
Weak tired & just not feeling human anymore.
Kidney stones
Reoccurring infections in my left kidney bronchitis & respiratory breathing problems
High blood pressure but always used to be low
The list in endless guys, but I hope when I start my treatment I can have a better quality of life.. because I've just been existing,
& hopefully I can have a better understanding now I know the name of my disease & I can educate myself & adapt to living with it.
Thank you for taking the time to read my post. Im sorry if I've rambled on to much, but it would be amazing to hear back from some of you who can relate to what I'm going through, it's a very scary place to be.. I'm in the unknown.. eeek ☹️❤️
Written by
LauraMk30
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Firstly sorry you are going through all that and for such a long time your symptoms sound awful! I can't believe how long you have had to suffer with so many symptoms.
I have been lucky as my diagnosis came less than a year after symptoms I have quite a few but I'm lucky that there is currently no organ involvement but my lungs are currently been monitored.
I take Methotrexate and Hydroxy. I too am recently diagnosed, Lupus can have so many over overlapping conditions which I'm sure many will be able to relate to on here.
I hope you have some improovment in your health soon. Take care. This forum is a good place to chat and find support as well as advice.
I have probably spent the past 2 months reading all about Lupus, lupus uk offer a membership for 10 pounds for the year or you can buy information booklets dvds very cheaply which they post out. There's is also a download booklet you can print or request for free through the website.
Keep us updated how your GP appointment goes. Best wishes x
Thanks ever so much for taking the time to message me. I was quite nervous posting.
It's been a long time but I feel much comfort knowing it has a name. That's really good that it didn't take long for you to get a diagnosis, that bought a smile to my face because you begin to loose hope after years of waiting & it's amazing to hear a positive timescale.
I know I described quite a few of my symptoms. They've been stable & ongoing for many years so I thought I would just list them. I'm glad to hear you don't have organ involvement. & im glad there being monitored 💛
How did you get on with the Hydroxy at the beginning? Are the tablets big ? As I cannot swallow tablets due to gag reflux & plus my swallowing isn't very good at all these days.
I've heard about that it can overlap, I'm intrigued to have a better understanding. I know I need tests for APS too.
I hope to talk to more lovely people who can relate & advise & just talk to.
I feel a bit lost at the moment.
The membership sounds great I might go ahead with that. & I also put my address down for a booklet about Lupus.
No problem! I'm still fairly new to it all but it is sinking in now and I was quite nervous posting for the first time but once you see how nice everyone is it makes you stick around.
Yeah you have defo been through the wars haven't You, I'd say my worse symptom has to be the joint pain and inflammation my hands and feet look like balloons at times and I've lost a lot of function in them so I'm always dropping things but I did that pre lupus anyway haha.
It can be so scarey I hope you get some good consultants it makes a difference I can't praise mine enough I feel well looked after, if anything the first few months seem overwhelming as lots of tests and monitoring. I'm sure it will all calm down soon once we adjust and settle with medication.
The hydroxy are around the same size a circle paracetamol, they are easy enough to break up though. Maybe mention to GP as i do think it's possible to have it as an Injection.
Funny i have gone the complete opposite, many mention this weight loss, but I have gained a good stone since feb and the tablets have increased not decreased my appetite maybe they will do the same for you x
Welcome to this forum, which I can honestly say has been a lifesaver for me since my diagnosis 18 months ago. With such a muddle of symptoms and confusing test results like you have it is very difficult to find people in ordinary life - including medical professionals - who can help us make sense of what is going on and feel less isolated.
I really identify with your feelings about gastroscopy too! I managed to tolerate mine but only just! Last time it was suggested, I said, "Ummm...possibly, I would rather die" and I was only half-joking!
One other thought is I wonder if you would find it useful to get some coaching in techniques for reducing anxiety ? Most GPs can refer you for CBT for this. x
Thank you all for having me, these forums are truly wonderful, I'm
The only one in my family who has a AI disease... 's. & it gets rather lonely in my world.
How have you been coping In the last 18 months? I hope to be more balanced in a year, more knowledgable & educated of my disease I'm taking it slow because it's been a rough old time. & I'm exhausted mentally & physically at the moment.
I'm glad you can relate to Confusing test results, & you are so RIGHT!! I struggle with people around me at the moment because they say at least it's not Vasculitis? Lupus isn't as life threatening? Come on buck up! Those leading an ordinary life fail to understand mine. Quite isolating.
Jeez I take my hat off to you ! As soon as they gave me the sedation I was fighting them! I'm a quite a placid timid person so that's quite shocking. Haha ! I would of said the same !
I think I do need a bit of counselling. I've tried CBT for a few months but it didn't seem to ease.
But I have asked to be referred for EDMR therapy.
I also suffer from PTSD.
So due to some past experiences it's not what I dread will happen it's what's already happened. I had a horrible endoscopy procedure back in 2004 & it put me off for life ! So when it was mentioned that I needed an urgent one o was like.... please put me to sleep. It was denied, so now they can empathise why.
I don't really know where to start. I'm not often lost for words. But I am totally horrified by your tale and so sorry you've had to endure all this for so long. I think we all appreciate that lupus is grossly misunderstood by most of the medical profession but your GP sounds guilty of gross misconduct??? The average diagnosis takes 7 years but you've obviously been a lot longer than that. Far too long. When you have the time and energy I would consider making an official complaint. You should have been referred for further specialist investigations a long time ago. That alone must feel like such a blow!
Anyway, that aside, I'm so glad you are here. This site has been invaluable to me, for information and emotional support. I hope you find it reassuring being here with us. Welcome.
I think I'd been suffering from lupus since the birth of my third child in January 2008 and was wrongly diagnosed with SCLE in November 2013, so I was 5 1/2 years to diagnosis. Finally got the correct diagnosis of SLE in April thus year. And a new treatment plan.
To be honest, I was relieved when diagnosed in 2013. I finally felt that I knew what I had, it made sense of most of my symptoms and I felt that I would finally get the care and treatment I needed. So it was a "phew, I'll be taken seriously now" feeling and I won't be made to feel like a hypochondriac any more.
It didn't turn out to be that simple for me. Local care hasn't been good. I've been refused 5 requests out of area to see various doctors, lupus specialists and the Lupus Centre of Excellence in Bath. So I ended up complaining to my MP and attending a meeting with two senior health officials from my local health board trust. Anyway, I've posted about my bumpy lupus ride. I'm not the only one who has struggled, unfortunately.
I have struggled due to the fact that my bloods haven't really reflected my symptoms. I've only ever had 2 positive ANA results. My anti DS DNA has only ever been low, not considered a positive. My Rheumy didn't seem to want to believe anything other than the bloods. But a good Rheumy / Lupus specialist will diagnose on symptoms, just as much as bloods.
Back to you. Like you I joined here immediately. I joined Lupus UK. I ordered books on Lupus. I googled. I read. I searched posts here. Read lupus UK information sheets. Read their website. I wanted to know as much as possible about lupus. I have been told that pro active patients have the best outcome, health wise, in the long term.
Did you say you were in Cheltenham area? I'm not great at geography, but does that mean you could be referred to the Lupus Centre of Excellence in Bath? Might be worth travelling for the peace of mind? It's the least your GP could do in the circumstances!
Anyway, that's enough for now. Please keep in touch. Post questions and concerns. We're happy to help. Most of us are not medically trained (a few are former nurses, health care workers) but just by sharing our own experiences it does help and you won't feel alone.
Best wishes
Wendy
PS - Please look into changing GPs or GPs surgery!!!!!!!!! Surely you've lost all faith.
Ive been doing my research & apparently my doctors surgery has been ranked one of the best, maybe it's a personal Vendetta. I have no other explanation as to why they have treated me so badly. It is horrifying because I've spent the last 10+ years floating through my life, & they could of helped me. I get the same patronising look, & the same unresponsive reaction each & every time. & when I was at my most desperate stage I found health unlocked, I was at the point of no return & it literally saved my life.
It's been such a long drawn out ordeal & now I've been discharged from Birmingham & now back in the hands of my GP with a definite diagnosis of lupus, I feel weary. I have so much evidence now that they cannot not help me.
Since the beginning I've contemplated long & hard about taking my surgery to court for medical negligence. & as soon as I had a diagnosis I was going to start proceedings.
I don't know why they have left me this long, it took me 6 months to get a referral to a specialist in Birmingham. They were convinced I was healthy so that's why I paid a lot of money for private bloods.
It's terrible & a massive blow,
Aww thank you it's great to be here, & excepted, it's nice to of had such a warm welcome. It really has put my fears at ease, & even though my parents are a little unconvinced that lupus isn't as bad as Vasculitis, I've made them aware that a disease in itself is bad enough, & I don't really need anymore negativity as I have to learn to adapt & live with it.
Emotional support is vital & im glad to hear you can receive that here, it's lovely to apart of a lupus family
What is SCLE? I'm glad to hear you had the correct diagnosis this year. & treatment. How are you dealing/coping with the treatment ? I've heard that due to different severities of lupus you can be offered a strong immunosuppressant? I just hope my treatment is tailored properly & I don't get fobbed off.
I've been out today for an hour & I've just got back into bed. My dad thinks I'm suffering Malnutrition, he's probably right as I haven't eaten a decent full meal in a while. I just feel lethargic & weak.
Oh to hear someone else like you say the same sort of thing I am thinking. " I'll be taken seriously now" is something I felt when I saw the specialist for the first time. I have to stop thinking I'm back at square one because I'm not after 10 years & more I finally have a diagnosis but leaving it in the hands of those that dismissed me, discriminated against me, belittled & patronised me is kinda scary.
Jeez! I'm sorry to hear you've had a really tough time with local care too! Crikey! What an ordeal to be heard! It's so frustrating isn't it! & being misunderstood, is a rough ride. We're all unique though, so are bloods are bound to change at some point. Mine have always stayed the same or got higher I'm sure that was enough evidence for my GP to warrant an intrusive investigation. It's terrible to be denied just because your symptoms didn't match the bloods or visa Versa.
That's good then because if we all put our lives in the hands of a rheumo or GP that had no understanding we'd all be like a needle in haystack.. waiting to be found heard & helped. I've felt like the little pin lost in A mound of hay.
As much as I was certain I had lupus years ago I did do a little research then. & now I know I actually do have it it seems more surreal. Actually it is well and truly real. So I'm gunna be doing the same as you just so I can fully understand everything. What does pro active patients mean? Actually I'll google it as I'm full of questions & don't want to burden you with them.
Yes I live in Cheltenham
Yes bath is closer to us, once I see my doctor Monday I'll have a list of questions & will request a referral. I know I'll get the (rolling of the eyes) & your so frigging right it is the least they can do.
Thanks ever so much, your a star. I've enjoyed writing to you & hopefully we can talk again sometime soon. Please keep me posted with your progress & I'll be sure to do the same.
Quick reply - you MUST change GPs. You deserve better. You don't need more battles. You need someone who supports you. Who understands you. Someone who might not get lupus 100% but understands it's serious and you need looking after. I don't want to scare you, but from your reading you must know that lupus takes us all in very different routes. It must be well managed. Your life and quality of life depends on it. In the 1950s, if my memory is correct?!?! the majority of people with an SLE diagnosis died within 5-10 years. Thank goodness things have changed. Our life expectancy now is virtually the same as Joe public. But it can still be life threatening and life limiting. Change GPs. Get a referral to Bath. No more wasting time or energy. Out of interest, how can you be diagnosed with SLE in Birmingham and be discharged back to your incompetent GP? No one with SLE should be discharged??? I'll reply to the other points you raised later.
I feel as if I do have another battle on my hands but I hope it's gunna be less stress on me & more of a battle for them to earn my trust Definitely need the right doctors who have the right approach.
Hi Lauren, I like yourself had to battle get for years. He said I had an anxiety disorder and kept sending me away. Symptoms were joint pains, rashes, fatigue, hair loss, haemorrhaging on skin. Seizures (but still nobody believes me that I have these as neurological tests negative), they last about 4 hours so definitely not a panic attack. Nerve pain, abdominal pain, blurred vision, dry eyes, sun sensitivity, uveitis, ocular hypertension and reynauds. Parts of my body go numb and twitching and I get spaced out. Also syncope. I had haemorrhaging in my retina and nearly went blind and my eye consultant spotted that I had a connective tissue disease and did the tests my ANA was 1.160 speckled. Even then my GP said I'd diagnosed myself and made me wait 3 months to be seen. I had my diagnosis and he said "you can see it now your older and you've a long road ahead!" I have been told that I probably gave an overlap with a few as often lupus brings others to the party! I have centromere b antibodies as well so scleroderma seems to be one of them. My daughter now 11 going through the same since age 6, her ANA was 1.80 speckled, recurrent infections mostly kidney , hair loss, joint pains, mouth ulcers,anaemia, fatigue,malar rash. Circulation problems. She was sent away by numerous Dr's and rhuemy as ANA was low until I kept a dairy and photos of everything and demanded a referral to Alder Hey. They are keeping a very close eye on her and now admit that something is wrong. She also has scans at Salford as they specialise in scleroderma as well and she has reynauds. My mum ill since childhood partial lobectomy, Gerd, eosopogitis, glaucoma, chronic bronchitiasis requiring hospital treatment, recurrent pneumonia, joint pains, mouth ulcers hair loss, retinal haemorrhages, malar rash. She is nearly blind now and can hardly breathe. She had a negative ANA 3 times so nobody would listen. She came back from Spain covered on erythemus legions so I took her back to the gp and demanded another ANA was 1.640 homogeneous. Referred to Manchester and diagnosed straight away in February this year so around 50 to diagnose.May she got severe vasculitis and kidney damage. My 8 year old girl is now coeliac and my son aged 5 is having problems. I know how you must feel I've been fighting for years and have had a battle everytime as unfortunately "anxiety" on your notes gets you labelled at every turn. So far I've proved them all wrong! I'm now on hydroxychloraquine and it has really helped me. I hope you get treatment soon and start to feel some improvement. Always be your own advocate as you know if something is wrong. Sorry about the long post it's been epic tbh x
Extreme fatigue, skin rashes, hair loss and joints/muscles aches and pains are all common symptoms associated with lupus. To find out more about symptoms associated with lupus, you can download or request our free information pack here: lupusuk.org.uk/request-info...
We published an article on our blog about ‘Coping with Hair Loss’ which you may like to read here: lupusuk.org.uk/coping-with-...
We also published a blog article on ‘Pain Management’ and ‘Managing Fatigue’ which you can read here:
If you would like someone to speak to, we can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a local contact to speak to, you can email me at chanpreet@lupusuk.org.uk .
Have you spoken to your GP or rheumatologist about the numbness you are experiencing in your hands and feet?
Good luck for your upcoming surgery, please let us know how you get on.
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