Well i still haven't been diagnosed, last time i saw my rhumy was june - now sent a letter saying he wont see me until november?! I am still being checked for lupus every time i see him. My gp said it does look like im very close to being diagnosed with it now.
But, I havent been very well since saturday/sunday. I have had diarrhea none stop since monday morning, i have threw up a few times monday - havent since with is a plus. But since monday afternoon I have been very uncomfortable (throbbing, aching and pains in my right side around my kidney) I do have alot of uti infections which develop into kidney infections I did only have water infection about 3 weeks ago, i went straight to drs yesterday morning and had protien in my wee, she thinks i just had stomach bug because i didnt have blood in my urine and sent me on my way.
But today i have went into work for one hour then got sent home, I have been in crippling pain with my lower back and still the aching throbbing pain in my right side of back (kidney area)
I have no clue what to do as my rhumy is on holiday all august so I am going to be emailing him today to get him to contact me as soon as his back.
Oh also, I have lost 5lb since monday which is quite worrying but my stomach is so bloated i keep going very dizzy, feel like i have water infection uncomfortable after i wee and feel like i need a wee all the time.
Im not sure if i should ask to see a lupus specalist again, or I have heard theres a hospital or some sort in London?
I feel your pain, so sorry your going through this too. I am from the US a,d I am new here. I have been sick since Monday seizures,had right side pain, blood in urine, fever and to add fuel to the fire I also have Trigeminal Neralgia a very very painful,nerve disease. Here in the states they a so reluctant to, treat people who have chronic pain. They think everyone is selling their drugs or are users. I've tried everything Botox, supplements ,and acupuncture ( which does work.) it won't cure our kidney infection but until antibiotics kick in acupuncture works for the pain. Get,well,soon!
I'm kind of coming from the perspective of someone who has a SLE diagnois for 34 years and have had two serious renal flares - along with a few minor ones here and there.
I'm sorry but I'm going to be blunt. My last flare - I lost 50% of my kidneys - and since then and up to this day - I do have protein in my urine - but never blood. If there's even the slightest suspicion that you have Lupus then you need to take the better safe than sorry approach and find another medical opinion without waiting one more minute.
The Doctor who sent you packing with the - "there's no blood in the urine - so your Kidneys are OK" - is....to put it as nicely as I can - a profound moron - (or rather - like a lot of GPs - just grabbing the simplest answer)
GPs are not very knowledgeable about Lupus. Over a life time I've had many who had to admit this to me.
Again - I apologize if I'm coming on a little too full on - and understand that urine/kidney/gut infections can be pretty horrifying in themselves. But the symptoms your'e describing also - pretty much to a tee - describe a fairly serious kidney problem.
Infections in themselves can attract SLE antibodies to a particular organ - especially the kidneys - so those uti's & kidney infections might actually be a pre-cursor to a renal flare.
The acidic (?) upset bowels, vomiting, frequent urination, bloating and kidney pain all add up to something I'm all too horribly familiar with. To be honest - my heart sank when I read your post.
But again you're absolutely right, it could just be an infection along with a million other benign things - But given your Rheumalogist's suspicions I think you still need to get yourself to an ER - (or get another Doctors opinion). Tell them of his opinion regarding suspected Lupus and tell them 'every' symptom you've been having - even if your'e not having them right now.
* Do not walk away until someone does a full spectrum of what are essentially - some pretty simple renal pathology tests.
Trust me - you don't want to live with the consequences of permanent renal damage because you're waiting for a Doctor to come back from holidays. An SLE renal flare can happen very quickly. Renal flares are time urgent.
Before my last renal flare diagnosis I felt really healthy some days too. I'd actually come back from a very happy walk thinking I was over the worst and everything was fine when I got the call from my (ex) specialist who was admitting me into hospital.
I know it must feel a bit over the top to present yourself to an emergency department - but its something Lupus patients have to do when we have the slightest suspicion that somethings amiss - even if it means being a little embarrassed and being turfed out.
I really think a better safe than sorry approach "right now' !!!
At the very least - it wouldn't hurt.
Preventative medicine is so important when trying to prevent long term grief.
Thank you for that, I dont think your being rude at all, some times we all need a kick up the arse, espically with our health.
I have felt abit better the past few days, but still getting the odd ache and pain in the back but nothing how i was last week.
All i do is hassle with Rhumy to get in touch with me or call him very upset but he never responds, my GP's are not any help at all so i find it a massive waste of time going back, i do have an appointment to see another gp on the 14th August to re do my urine sample but this dr is very rude and always seems to laugh at me when i speak to him about my health.
I have spoke to my gp to see if i could get reffered to a different rhumotologist but she thinks it will be a waste of time and I will be waiting a long time. My parents are thinking about going back private again but this time to the lupus hospital in London but its very expensive.
I always do seem to get water infections which give me horrible pains and feeling uncomfortable in my back and ask for a scan or ultasound just to be safe but always get declined.
I did email my rhumy last week as he should be back in office this week, so unfortunately all i can do is wait - I have been to a&e numerous of times in extreme pain connected to do with my health but all they do is drug me up and say im still being investigated and send me on my way. I have been to a&e at least 10 times this year already but always get sent away... So all i think i should do is hassle my rhumy who doesnt get back to me and wait...
I'm from Australia but I get the impression your medical system is pretty much the same as here. A bit easier to jump GPs here I believe ?
Try not to take the rude GP your going to see too personally. Just make sure he does his job. Lupus patients -especially undiagnosed ones seem to cop a lot of contempt. You're not alone there.
I've recently learnt that our public health system that's meant to look after everybody isn't what it seems. I was recently blocked from treatment from a very senior Professor - but fortunately a 'fill in' GP was decent enough to inform me that things aren't as fair as they used to be - and to get a top specialists attention - or to even speak to them over the phone when its urgent - I really needed to be a private patient. Here - if things are urgent you can pay for a one off appointment and perhaps gain a little more respect - at least temporarily.
It seems to be a consistent horror show when trying to get a Lupus diagnosis - and I'm hoping once you get some kind of diagnosis this nasty ride your'e going through will stop.
In my experience - when I've been in a similar situation to you - quite often the problem ends up being the opinion of a specialist - or sometimes an over mighty GP. GPs are like zombies - they read a letter and obey whatever half baked ideas any specialist or colleague has. eg. Its very common for Doctors - if they don't know whats going on - to blame the patient and come up with some social or psychiatric label - or just say your 'anxious' - its enough to create a spiral of discrimination.
And make no mistake. It is discrimination.
Funny how you get anxious when you're sick and cant find help. When this happened recently - I became so traumatized I couldn't string two words together - thus compounding the 'its anxiety' fob off.
I'm really hoping your Rheumatologist has something to offer you - but if there's no joy - it might be worth asking for copies of all his and other specialists letters to actually see who your dealing with.
I was recently very ill and suffered from both public patient - and blame the victim syndrome. This seems to be a plague for Lupus patients. We have to be hyper-vigilant but get kicked in the teeth for it. And of course its our fault if a Doctor doesn't know what he's doing.
When I found out my recent specialist was making discriminatory assumptions about me (looked at her letters) I went on a search for a new specialist. I just rang around and spoke to some receptionists about certain potential specialists at different hospitals, then bounced the names off - the 'fill in' GP - who knew some of the Doctors and warned me off the bad - or hard to see ones.
When I was about to go private with one of the specialists - I rang a receptionist at the hospital department I was leaping from to cancel my next appointment - she'd happened to be a witness to my desperation at my last appointment - (I'd actually broken down and cried in a very public waiting room - I'd been very weak and ill for about a year at this point and the aforementioned Professor just wouldn't take the time to listen and then somehow managed to blame me for not doing her job). This receptionist knew all too well the personality of the horrible wretched individual I was dealing with and was shocked to hear that I didn't get some much needed follow up that was promiced. The receptionist herself directed my referral to a decent and more competent - and more junior public Doctor at the same department. I'm now slowly getting better.
This was sheer bloody luck. But it only takes (one good receptionist) and one good Doctor to treat you with validation and respect - despite the pack nasties out there.
I'd actually talk to one of the administrators here at this site - they might be able to direct you to a good Specialist if your Rheumatologist turns out to be of no help. But I'm really hoping he has some answers for you. They also might be able to help you gain access to a decent Doctor immediately ?
Perhaps approach a social worker at one of the hospitals - see if they can help or provide you with a medical advocate to go with you to appointments. During my recent ordeal I actually had an anti-discrimination lawyer sitting waiting on a perch to swoop in if things became more desperate - but I held off because doing stuff like that can cause doctors to totally scatter.
It also might be worth re-posting for some British advice as to how to navigate the system there.
You might just have to gently tell this obnoxious GP you're going to see to run a full batch of renal tests.
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