Prof Harper's response is completely different in this letter to what She told me in person..
I won't write the whole thing but she states:
In summary presently there is no objective evidence to support a diagnosis of a systemic disease beyond the ANA.
(So no Vasculitis & now no SLE) !
I am beside myself.. it's a good thing to not have it, but after all these years I thought I had a name to my illness! & a reason for all the suffering !
She told me that my ANA AntiDS DNA & Anticardiolipin were all positive & indicated towards lupus since the beginning, she discharged me back to my GP, with a lupus diagnosis & wanted me to start Hydroxychloroquine.
It says I suggest a trial of hydroxychloroquine may still be beneficial to see if this improves her multiple Symptoms. Which I am happy with.,? Umm If I haven't got a AI why give me the treatment..?
It annoys the hell out of me that I thought I found someone who understood me, A 14 year battle to get a definite diagnosis is just not gunna happen! i am back at square one & to be honest I WANT to give up now. I've had enough!
My life depends on Thursdays appointment with the private Gastroenterologist.
I don't know what to say.. 😞
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LauraMk30
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It may be worth contacting the hospital's PALS team to see if they can help resolve this confusion. You are getting two different messages from the same consultant so it would be good if they are able to clarify and justify the reason for their diagnosis/treatment (or lack thereof).
Do you have a copy of your blood test results? Could you ask your GP to refer you for a second opinion and take them with you?
Hang onto the fact that the consultant suggests a trial of Hydroxy . She wouldn't say that if she thought you weren't I'll. Paul is right you need to sort out the mixed messages from her and he's right to suggest you do this thru pals or your GP.
Good luck for Thursday. Hope it goes well. Thinking of you. X
Yes I'm going to, I'm thinking of getting a second opinion. From a private Rheumatologist. They seem to know what their doing. The lady I saw was a specialist in ANCA Vasculitis. As I was ANCA Positive for the past several months But I'm negative now.
Yes very mixed messages, that's probably why I'm feeling a little torn.
That sounds like a good idea, since the beginning of this year It started with lupus investigations and then that was stopped when I was admitted to Acute care unit for possible Vasculitis- & a confirmed blood clot, and that's when all the investigations began. It just seems like I've come to a halt.
Yes I have a copy, and thinking of definitely getting a second opinion. It's just not sitting right with me. I know I have major gastro issues, but all of my symptoms are the same If not worse.. I'm a shadow of the person I used to be
Hang on in there Laura. I'm so sorry I really hoped prof ****** would be able to give you a diagnosis. It must be confusing and frustrating. Good luck with your gastro consultant apt. Look forward to hearing how it goes.
Me too, but I think because I haven't got Vasculitis I was quickly discharged. It's a shame that I wasn't referred to a Rheumatologist there. Everyone's blood levels go up and down, I just feel like I've been dismissed because of it.
I'm just in a bad place at the moment I guess. Physically! But also emotionally with all this confusion.
I'm praying tomorrow appointment goes well. My dad is coming with me
I haven't ate a full meal in what seems like forever!
I just really want to get better now Ludo, I've pushed myself to the max the last few days & I feel numb.. even though I have caught a cold virus & it's gone straight to my chest, wheezing, exhausted 😩 & just simply I don't know... not good.
But as you said I have to hang on in there I'm doing my best
I'll let you know how I get on tomorrow, thanks 🙏🏼 so much for staying in touch with me. I long to give you some good news! Hate being the barer of the bad x
I Long to hear some good news for you too Laura. Let's hope tomorrow's appointment brings you some idea with what's going on with your weight loss etc.
Will be thinking of you. I'm at Birmingham tomorrow should get the results of my Head MRI scan re my headaches and eye pain. I'm Hoping for some answers too. The nurse specialist there asked if I wanted to see a psychologist so I guess they think it's all in my head. Ha ha. I was inwardly annoyed. Pain is pain and you know when something's going on. See what tomorrow brings for both of us! Good luck x
💙 goooood luck for tomorrow Hun ! I'll say a prayer for you tonight too.
I truly hope it goes well & you get some answers. I'm not so pleased to hear " psychologist label. I would be annoyed too. Of course you do I'll bodies never lie. & jeez who would want to be ill! I sure as hell don't! I've had no one to really express to lately, so I called the Samaritans last night.. " despair" but feel okish today just hoping tomorrow goes well. I have faith.
How is your pain ? & symptoms? It's a lot to cope with isn't it..
safe travels & please let me know how it goes. Will be thinking of you xx
Sorry to hear about the confusions you are experiencing. I can understand how frustrating it is for you. Hopefully you get prescribed the hydroxychloroquine and if your symptoms get better. In the mean time I think it is definitely worth seeing a private rheumatologist just so that you can get to the bottom of things quicker and get answers quicker. Take care
It's nice to hear when someone can understand, i have a mixture of feelings.
I'm just really confused..
I didn't think they would still give me the treatment if I didn't have a disease!? Most of my recent bloods show that something is going on, I actually look as terrible as I feel. I think where my parents have been doing comparison pictures of me, it's made me feel low, silently angry, upset & lost as I am trying to get back to being that woman they loved so much, the person I once was., but I'm also trying to adjust to this new me, who's extremely tired all the time, bones of a 80 year old, treated like a leper because of my rashes, even my mum has decided to have her own cup.
Sorry 😐 I'm moaning & I shouldn't. A second opinion is definitely on the cards because I need some answers, I couldn't spend the next 10 years like this actually I won't spend the next 2 or 5 years like this.. 14 years is more than enough without treatment.
I am praying for you as well Laura. I have had a pretty rough journey in terms of health as well. I too was suffering without a diagnosis for roughly 5 years. I have been misdiagnosed and mistreated multiple times as well so I definitely understand your frustrations. It was just recently where I got my diagnosis of lupus and began treatment and things are starting to look up day by day. I know you must be feeling awful inside out but don't loose hope and don't let this illness get the best of you. I am sure you are still a beautiful woman and will always be but right now the health is probably messing with you always and making you feel so low. We are all here for you. Stay strong and don't loose hope or give up.
Laura, I can imagine your utter dismay and frustration. I have been dogged by symptoms for a couple of decades. Although I have definitive diagnosis of sarcoidosis, fibromyalgia and carpal tunnel on both hands; the malar rash I exhibited, inconveniently made its appearance inbetween doctors appointments.
I saw a doctor last Friday at the rheumatology dept. She began her assessment on autopilot. She made a sweeping diagnosis to her trainee doctor who was taking notes beside her that I have fibromyalgia! I tried to tell her I was diagnosed 20 years ago with that when she was poking me in various places. .
So she shifted her diagnosis to sarcoidosis I told her it didn't have the same signature as the flares I have had in the past with sarcoidosis and the lung ct was clear and no granulomas on skin.
When I asked about the blood tests being high in areas pointedly for Lupus she said she felt it was too early to diagnose that.
I asked her why her colleague another doctor in rheumatology had seen me recently when I was taken in to hospital via A&E had diagnosed a Lupus flare based on blood tests, my go description of the rashes and other symptoms I was displaying.
Her answer? She will take more blood tests.
I asked for a second opinion before seeing her as I guessed the clinic at my local hospital might not be helpful. Especially as on my discharge from a week's stay in the hospital undergoing numerous tests after A&E I was told by the respiration team I has asthma and a chest infection despite the sputum tests showing there was no infection, and the rheumatology doc that I was testing positive for Lupus. Such a mess.
So my experience is similar to yours one doctor in the same department gives me a diagnosis based on bloods and symptoms his colleague doesn't think it is.
As an aside The lady doctor above told me that the rash I had on my face might not be a malar rash. Even though it was exactly like all the pictures and descriptions. The rash was also onmy neck in parts but more so on my upper chest. The doctor said that my GP hadn't seen it. Why didn't I take a photograph then it would prove it.
I was stunned. I told her that my immediate thought was to see my doctor who did see the rash on my neck and chest and he was concerned enough to get bloods taken for a test for Lupus. Whilst waiting for the results I had the rash on my face which lasted three days at its peak then started diminishing over the week. I didn't go back to the GP as he was doing his best getting the blood test there was nothing more to do in my mind re the rash on my face. I still had the chest " infection"as it was thought to be at the time and taking antibiotics.
I did take a photo to send to my friend but thought afterwards that It was a bit OTT and I am not one to take selfies of cuts bruises or fancy dinners ! I deleted it after sending. I never thought for one moment I might have to rely on this as definitive diagnosis. To accompany positive blood results.
We are almost encouraged through lack of support, to become our own sleuths, which in turn could be construed as us becoming self absorbed and hypochondriacs.
So asking for second opinions is the only way one can move forwards and try to remain focussed on finding someone who has an interest in this illusive and very problematic disease.
I now thankfully have an appointment at University College Hospital London first week in September.
I do wish you well in your search for a sympathetic second opinion and that you will find an answer to your continued ill health.
By the way I was also asked if I had taken Hydroxychloroquine before and it was suggested that I take it. She said she will send a letter to my GP. I told her I prefer not to take it if I do not have a definitive diagnosis there is no point in my mind to take umpteen prescriptions some of which may cause a drug induced Lupus reaction. Then no amount of photography will be useful if it's simply a drug reaction.
Gosh! I feel for anyone who has been in my position! It's horrible, Glad to hear that you have now got a definite diagnosis! How long may I ask did it take you? I've started researching SLE and I fit the bill. At the start- test for lupus- Vasculitis- lupus lupus lupus! Now I'm like... what the hell!
I had a rash on my neck 2 days ago, I took some pictures to add to the rest. To show them " hey hello I'm not crazy I'm not a hypercondriac I am genuinely suffering here" yes do send photos, keep a log, I've learnt that If your symptoms decide to hide itself at your appointments it's good to have some evidence ie pictures. Nothing is OTT when it's you that has to go through it. 💛
I don't think doctors at the hospital have any sort of a clue. Throwing me from pillar to post. It's this it's that. Never agreeing on one specific thing. You sound like your on the same page as me, both poorly & miss understood. I had tiny multiple granulomas on both of my lungs... they are still there. But why?
I have asthma but it's been under control for years, but since Feb this year I've gone down hill. GP put me on a steroid inhaler with atomiser. But I get out of breath when walking short distances. Or going up the stairs.
I'm suffering with malnutrition on top of everything as well severe gastric issues. I can't remember the last time I enjoyed a full home cooked meal.
My urine is telling me something is wrong again! I'm having pains in my side/back. Foaming urine, ammonia rancid odour. Coffee coloured. I'm using a hot water bottle to ease the burn in my back. & I get up every night and go to the toilet 4 or more times.
I've only just spoke to my GP I've had this for 3 in a half weeks. I keep getting infection & infection & then when ive taken god knows how many antibiotics I'm full of inflammation spots i.e. Bladder.
I'm a walking nightmare.., & no one seems to want to help me.. but hopefully I will find someone who will.
I'm happy to hear you have an appointment in sept. & I hope & pray all your suffering comes to an end, Please please please keep me posted on how you get on. X
Do you know-- This is an eye opener to me. I have similar symptoms especially a pain in my right side bottom of my ribs going right in and round the back- I wondered if it was anything to do with my kidneys or liver. No one has taken any notice.
The granulomas on the lungs are indicative of sarcoidosis too, thats what I had but it's now in remission - unless it is flaring again. The test for sarcoid - well one of them, is ACE test.
Same as me re asthma especially walking or even chatting.
I am fat. Have some of mine willingly! I have loaded on weight which might be a side effect of the steroids they put me on which now thankfully i am not taking. I wish my appetite was not so high, seems like because I feel so tired it triggers hunger almost like i need food to fuel my body - which obviously I don't!
Re insect bites - that is a source of amusement at home as I react so badly I had to walk with a stick once when i was bitten by a horse fly on my ankle. Another time i saw the horsefly on my leg above my knee and flicked it off when i felt it bite me (so I knew what type of fly it was) the infection grew into a huge round bulls eye type wheal. I took myself off to A&E I was concerned it was Limes - they looked on line and came back to me and said no it was hives and in any case you can't get Limes disease from a horse fly!!!. What rubbish its not only tics that carry it. I later became very unwell fevers etc and a red line was sneaking up my leg. I went to my GP and I was immediately attended to by the nurse with intravenous antibiotics and follow ups.
The urine thing is very important you get sorted. You should not have to suffer this and it should be addressed urgently. My goodness, I am stunned you poor thing. Please find the energy to make a big noise about your current health issues and ask loudly to be referred by your GP to a cente of excellence for LUPUS. Guys and St Thomas's are just that along with UCHL. there are others. But I go annually to the Brompton re my sarcoidosis check ups and have found hospitals don't talk to each other. It is as well if you can ask for copies of your tests to take with you. I assumed they all were in contact with each other but they are not always.
My recent visit to rheumatologyIpswich proves that, they had to write on my file that info should be shared with The Brompton, The Respiratory Clinic Ipswich and my GP and from them to each other. How silly when a life could depend on access to health files.
There is another thought that Limes disease also causes lots of spurious ailments, but one supposes that the raft of blood tests being done would pinpoint Limes if that was the case. For any of us?
Take heart, I know people say you are not alone but when you feel so low and life is an abject misery at times it is so hard not to feel you don't care about the army of fellow sufferers clamouring behind you because at that time when you are ill all you care about your own health for survival. A basic survival instinct.
I wish you success in sorting out your health I send my very best wishes.
I have been diagnosed with SLE for 14 years by a private rheumatologist after a stay in hospital for symptoms
Yet my rheumatologist who I have seen regularly since and who I have always said how lucky I was to have her has now told me I do not have Lupus and she can do no more for me but put me on a course of hydrochloquine and referred me back to my GP and also suggested a course of anti depressants as she thought I was depressed. Needless to say I rejected that option and she was then very offhand with me
I made an appointment with the original private rheumatologist and he confirmed that I really did still have Lupus so now I do not know what to do
I still have all the symptoms, fatigue, aching in every joint etc and every day is a struggle to get through
Hope you get your diagnosis soon and send you Hugs as it seems we are in the same boat
After reading all your replies, it seems as though rheumatologists might be receiving pressure from above that patients must satisfy certain criteria in order to justify the expense of hospital appointments and treatment. Every patient discharged creates space for a new patient to be seen which is good for targets. These are purely my ruminations. Clearly I'm becoming very cynical in my old age ....
If you are going to go privately, I would suggest you request a copy of your hospital notes (about £50, I think) and copies of your blood tests from your GP take with you.
I'm sorry that you're going through this. Good luck tomorrow xx
Sorry for late reply I've been in a lot of pain this eve with my back, diabolical if I'm honest. I can relate to the radiating rib cage back pain. I've had a few kidney infections this year. Please get it checked, things lay dormant. I don't think I've heard of sarcoidosis before so I will look that up. I haven't had a ACE test. Hmm 🤔
I've heard steroids can make you put on weight.. how u blatantly said "your fat" 😱 & have some of yours willingly.. 😏. I wish I could put on some weight! I used to love my curves !
Jeez! Well I was stung by a scorpion on my butt cheek of all places ! The sting was still I my bum when I flew home from Spain. I was rushed straight to hospital & in theatre. The sting had become imbedded caused a poisonous abscess that needed to be drained but they literally cut a large chunk out of my cheek, I also had a red line & septicaemia. I was in hospital for a little while, then had a nurse visit me everyday to clean and pack the huge hole with seaweed! It was like a mini volcano just pouring out with blood. I had that done for 4 months whilst on morphine & every painkiller going. Imagine a apple corer on a rather large scale that's how deep they removed the skin tissue etc., I have a huge scar now & cringe if I brush it with my hand ! Ewwww! Lucky I survived!
Omg horse flies hurt like hell!!
I had one on my back.. turned into a large blister, & popped & ended up becoming infected so that had to be packed too! Jeeezus! I can so relate to this !!! They never seem to take it seriously enough, Lyme's is so bad! Have you been tested ? Gosh what a horrible unfortunate event you went through ! Scary too !
I'll be roaring, at my GP soon. I'm filled with wrath! I actually got the chance to speak to my doctor today & I have a kidney infection ! But they've ran out of the antibiotics I need & a order can take months so I'm yet again feeling 😡! Have to call the doctor again as the pharmacist said the antibiotic prescribed to me has been non existent for months & should of gave me a different one as all doctors were made aware of the shortage..
I've been tested for Lyme's & im negative but it bites & stings lay dormant in your System for weeks months or years so a test should always be taken,. Who knows what that bug was carrying ?!
I can't help but feel really alone at the moment. And I totally get what your saying. I do care a lot for others but I just feel so lost on this long journey towards the light at the end of the tunnel.. just seems to me that I'm further away than I first thought. It's crap. Survival instinct for sure !
I wish you all the best too, your so very kind. Take care of you. Thank you xx
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