Hello Everyone, I hope you’re all as well as you can be.
So I finally have my Rheumatologist appointment tomorrow, which means I finally get the diagnosis that even my GP said he couldn’t tell me what ‘it’ is.
I didn’t feel nervous at all, until I was at my Nephrologist on Monday. I also have Polycystic Kidney Disease. I explained to him how two surgeons expressed their concern that I have exhibited severe lupus symptoms after both surgeries. He basically scoffed and said “you don’t have lupus.” I kinda just ignored him, he’s not exactly the best Doctor if I’m being honest...
Anyway, I went on to explain I have all the symptoms of Lupus, really quite severely too and they’re just getting worse. I’m only 20, and unable to work or go to Uni because of how severe all my symptoms are. I’m constantly in pain. He listened to my symptoms and went “Well, considering all of that, I highly doubt you’ll get a Rheumatology appointment, there’s no need for one.” !!??!!
When I told him I had one for exactly a week, he finally began looking at my notes and found my Rheumatology appointment. He sat for quite a while in silence just looking at the computer, then looked to me again and said “it won’t be Lupus.”
I asked him if there was a diagnosis in the letter and if he could at least give that to me, and again I was met with “No, the Rheumatologist will give it to you on Monday.”
So, now, I’m honestly quit terrified that it won’t be Lupus after all and I will again be left with all these symptoms that are destroying my life...💔
I have absolutely every single Lupus symptom now, with the relatively new addition of my right leg now so painful I can barely walk for long. The heart palpitations are new too, and they are quite honestly getting worse which is terrifying. I stil haven’t mentioned the mental symptoms that are now presenting themselves too. I’ve been hallucinating terribly, almost every night now and the mood swings are leaving me completely exhausted.
I’m just terrified that I’ll go tomorrow and they’ll say it’s not Lupus, and I’ll be left to suffer for another 2 years. I don’t think I can go on living like this... I’m basically watching my life go right past me, while being stuck in bed...
Sorry for the massive vent, I just don’t know who else to talk to. Any words of advice, experience, or wisdom would be massively appreciated.
I’m sending all my love.
Kim xxx
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Wanheda242
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Hi Kim, I am so sorry that you are going through this especially since you’re meant to be going uni. Unfortunately being shrugged off and disregarded is part of the process. I’ve never personally been told by a doctor that it’s not lupus but I’ve seen people’s experience where they have. My symptoms were ignored and it wasn’t until I had to be admitted into hospital 3 years after I knew that something was wrong when I had swollen lymph nodes and constantly getting ill which then muscle pain were added and fatigue and so on. I will admit that before I was admitted from a&e I had an amazing doctor who had suspected it and I had a rheumatologist appointment lined up, I just got worse before it.
What I advise is make sure you think your doctor is doing the best for you. If for whatever reason you don’t like them, get another one or at least ask for a second opinion. I cannot stress how important it was. Had one of the other doctors taken me seriously earlier, I may not have developed other secondary conditions.
Also, I know it hurts believe me but do your best to do a bit of stretching. I have found that it helps with the pain and I was told to by my doctor. I was at a point where I could barely get out of bed but stretching and exercise has at the very least allowed me to walk.
My last advice is that you know something is wrong, push for action and tell them everything. When I was disregarded I did give up a little and believed them even though deep down I knew something was very wrong. You know your body better than anyone, remember that!
I hope you do get some answers and if it is lupus that they will be able to manage it for you as quickly as possible. Make sure they do blood tests because they need to do those also to help with the diagnosis.
You sound nervous and that is understandable given what you are going through. What tests has your GP run? What symptoms are you concerned about? What did the surgeons notice?
You are young and want to feel better. I hope you get answers.
My GP hadn’t done any tests unfortunately. It was actually my second surgeon, because the symptoms I presented with after surgery were just awful. I woke up with a severe malar rash, rash also covering my arms and legs, my hands and feet were purple, very high fever, and an intense sensitivity to light. I was kept in a dark room for 2 days until they began to pass, it was my surgeon who actually done a blood test for Lupus. Since then, I’ve heard nothing and every time I’ve phoned my GP for the results of the test, he has said he can’t give this diagnosis and the Rheumatologist will explain everything.
The symptoms I have pretty constantly and intensely are:-
-Terribly painful joints. My left wrist and fingers often completely seize up and are agonising.
-Malar rash, and a rash that appears everywhere on my body in patches.
-Intense fatigue, I’ve been given sleeping pills, vitamins, and changed my diet. I remain exhausted, no matter how much sleep I do or don’t get.
-The Pain I have when breathing is probably the worst thing. I actually feel afraid to breathe sometimes, because it’s an awful awful pain.
-My hands and feet go cold and purple almost everyday.
-Worsening clumsiness, not normal clumsiness at all, I have smashed almost every single glass in my Mum’s cupboard because I lose control of my hands.
-Heart palpitations that are getting worse.
-Mood swings and hallucinations I’ve never experienced before.
Thank you so so much for your comment I appreciate it so very much xxxx
Good luck tomorrow. Hopefully you’ll get some answers that fit with your symptoms and most importantly some treatment and feel much better soon.
Not impressed with your nephrologist, a scoffing dr is one to be avoided. Can you ask for a different one?
Hopefully your rheumatologist will be kind AND knowledgeable.
Have you told any of the drs about the hallucinations? It’s hard to mention sometimes but very much a part of active lupus for some of us and warrants quick treatment. Mine come in my worst flares but go away very quickly on high dose steroids and the other lupus treatments.
If your rheumatologist is just focused on certain blood tests and you don’t have the expected ones, politely point out not everyone does, especially with the neurological side of lupus (much less likely to have positive dsDNA unlike those with lupus nephritis who more often have high autoantibodies when the disease is active and that’s what some less knowledgeable rheumys base their diagnosis on sometimes).
Good luck, let us know how it goes and if the answer/ diagnosis you’re given doesn’t fit with what you think is happening, ask them to explain why they have made that decision and how all your symptoms fit. Sometimes (often) it takes a while to piece everything together but it’s important they’re nice and caring and try and help even if diagnosis is not definite for a while. If not, never be afraid to seek another opinion x
Thank you so so so much for this message, I needed it more than you could ever know.
Unfortunately if I ask to go to another Nephrologist it’s incredibly hard to get to the next nearest Hospital without a car, and I can’t drive because of how severe my symptoms are. So I’m pretty much stuck with him, even though he really doesn’t seem to care at all.
I haven’t told any of my Doctors about the hallucinations, they’re my newest symptom along with the mood swings and honestly I’ve been too afraid to mention them. My Nephrologist sent me to a Psychiatrist when my symptoms first started because they were “all in my head.” 😣 So I’ve been far too afraid to mention the mental symptoms but I’m going to tell the Rheumatologist tomorrow. They are so very awful, I go into an almost haze like state, and things I’m completely convinced have happened haven’t happened at all. I never know where I am anymore. The mood swings are also so severe it’s effecting my relationships and leaving me exhausted... it’s awful.
I will be sure to let you all know what happens tomorrow, I feel a bit more confident now thanks to you.
Make sure to write down your symptoms and take any photos. Since the surgeons mentioned lupus to you, you could just tell the doctor straight out that you are concerned and never got the results from lab tests.
You are clearly not well. I hope the rheumatologist can shed some light on this.
When I first saw the rheumatologist,they ordered loads more blood tests.
Everything seems to take ages.
The rheumatologist asked loads of questions I couldn’t see the point of some of the questions,but im not an expert.
Stretching exercises are a really good idea.they help retain muscle tone and are good for your joints.
You don’t have to do too much,start gradually.
I do exercises for my back daily.
I go the gym twice a week.
Sometimes I don’t want to go,but make myself.it gives me a feeling of achievement.im currently on morphineand immunosuppressants ,so feel pretty cra* some days.
Can you bring someone you trust with you to your appointment. ? Maybe your mum or a close friend.
It’s hard to take in all the information sometimes and another pair of ears could be helpful.. Also moral support for you and company in the waiting room.
Make a list of all your symptoms so you don’t forget anything.
Photos of rashes if you have any.
A list of any medications you are taking.
If you don’t understand anything ask them to explain.
If they say it’s not Lupus ( it may not be), ask what it is. Something is causing the symptoms.
If they say your blood tests are normal , what have they tested?
Blood tests are only ever part of the picture.
Most importantly good luck and I hope you have a good and kind consultant.
Your nephrologist doesn’t sound very helpful or professional.
My heart goes out to you Wanheda. At your age you should be looking forward to the future with hope and positivity. Instead you're having to live with horrendous pain and uncertainty about what the future holds for you. Unfortunately so many of the professionals we see are very well trained but have never actually experienced the issues we experience with AI conditions. I hope you get the answers you need at your appointment. Even if they're not what you want to hear, at least then you can start to move forward with the treatment you need. Much love x
Hello....I’m so sorry to read about your situation. It is very worrying when you don’t have an explanation or diagnosis for your symptoms.
Unfortunately it can be a long journey towards a lupus diagnosis. It has taken me 2 years to finally get a diagnosis from my Rheumy team.
Don’t give up! If you don’t get the answers you need keep pushing for answers. Get a second opinion if you need one. I got rid of my first rheumatologist because he was useless and completely unconcerned about my health.
Take photographs to your appointment - this is so important because you won’t display every symptom on the day. I started a photo record of every rash, ulcer and swelling. It really helps my doctors.
Keep a detailed record of your appointments and outcomes. Sometimes you will come across a specialist who cannot access your notes for whatever reason. Have them to hand so you don’t have a wasted appointment.
Make a note of everything you want to ask before you go to an appointment. Otherwise you may forget to ask.
Don’t get too hung up about a lupus diagnosis. What you want to know is if it’s an autoimmune condition that is causing your symptoms. If it is there are many weird and wonderful AI diseases with similar and overlapping symptoms. It may take time for you to find the diagnosis.
What is most important is getting the right treatment. Your rheumatologist can proscribe appropriate medicines to treat your AI condition but you need to work with your GP to get on top of your pain treatment.
I hope you get all the help you need. Keep smiling, though. You can get through this x
I just wish to say "Good Luck🍀 for your Rheumatologist Appointment". Hopef, he/she will fully listen to all the health issues that you gave been suffering with and be able to run more blood tests or even a Biopsy to aid diagnosis of your condition.
Like all these Auto Immune diseases they are very difficult to decipher, as they all have symptoms that are similar to many out there.
I can relate to lots of what you are going through, and I have Dermatomyositis.
I agree with other members comments, take photos and record how you feel on a day to day basis. If you can take someone with you to give support and he/she will take in info that may just go straight out of your head.
All the Best.
Please keep us all posted, our thoughts are with you.
You have my sympathies and sorry I have no words of wisdom or expertise, I’m on a journey too , for a fitting diAgnosis , but wish you well for your appointment
I've had neuropsychiatric symptoms with SLE flares - and to be honest- it's hard to hide this when the brain gets a bit blippy. I attempted to hide my psychological symptoms that were a direct result of my flare - but I was on the receiving end of
amoung other things - chronic and repeated diagnostic overshadowing - and this was with a pre - existing lupus diagnosis.
My strong advice to you is - if you don't get any sort of satisfaction with you're Rheumatologist appointment - acess a medical advocate - or go even higher with the knowledge that you're possibly being suptly bullied and discriminated against against because of the pschological state you're in.
I'm mostly recovered from my last flare - and I'm just now gaining the umph - to get structured help from the Human rights Commission ( I'm from Australia ) to ensure I have an advocate behind me - next time I become unwell.
Don't give up until you have an answer - no matter what - and as many people have said - get a supportive and assertive person sitting next to you in these appointments.
( also - just a thought - but some of those symptoms sound like a B12 deficiency ) - Doctors often don't think to test for it.
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