Apologies for the long post, I just need someone to talk to that understands this.
So you may or may not remember my last post, basically after surgery my surgeon expressed her concerns that I’m experiencing every single Lupus symptom, but not getting any treatment for it.
So I had bloods done, and after leaving Hospital was left in the dark for 2 months. I phoned a few times to be told the results of the blood test had been posted. No one could seem to tell me if my Lupus test was positive or negative.
I finally got a letter in last week, saying that I have been given a rheumatologist appointment for the 2nd of December. No test results. I phoned my Rheumatologist’s office, and 4 different people have answered and told me they would (in their words) “Prefer not to discuss this diagnosis over the phone and that your Doctor will explain everything.”
So I at least know there is a diagnosis, but no one seems to want to tell me what it is. Has anyone experienced this? I’ve spoken to a few Lupus patients on here and other medical forums, where I expressed my concerns that whatever it is I have, it is getting worse. My biggest concerns right now is severe stomach pains, pleurisy like symptoms, and something rather new.
I’m having quite severe, unprompted heart palpitations. GP tried to put it down to anxiety *sigh* but this is nothing like anxiety. These are happening even when I am at my most calm, I have been waking up in the middle of the night from an actually peaceful sleep and grasping at my chest because it feels like my heart is rubbing against my rib cage. My only relief from all these ‘Lupus’ symptoms has always been a lavender bubble bath, now even when I’m relaxing these heart palpitations are coming from absolutely nowhere.
I know we can’t give up, but I really feel close to it. I’m so unbelievably exhausted, and I’m constantly listening to family and doctors say “At least it’s not cancer.” But, the scary truth is, I’m sicker than my Father who is a Cancer patient. I’m only 20, and feel like a very very old and sick woman...
So honestly any advice, opinions, or thoughts are very gratefully welcomed here. Thank you for taking the time to read this.
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Wanheda242
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Thank you so so much. I actually phoned the rheumatologist office an hour ago, I’m not doing great at all today. Had a bit of a break down on the phone to my Rheumatologist’s secretary but again her answer was just along the same line of not wanting to say anything, and that the Rheumatologist would explain everything. I just feel so so ill and currently have half a mind to just go to AE but don’t want to be told I just have to wait yet again 😓 Thank you so so much again. Hope you’re doing as well as you can be xx
I don’t understand thetemtationtogotoA NE, but from my experience itdoesntdoanygood. You wait for hours,then they tell you to 1 go to your GP, 2 to wait for rheumatoid appointment.
Wow Wanheda, I am so sorry you are going through this, and so young. Patience is an attribute you definitely develop when going through this. The cogs turn slowly.
It would make me nervous that they are all saying it really don’t want to tell you over the phone’ except that if it were something that time was of the essence, I think they would get you in much quicker? Idk. But that part might be good news?
Please let us know the out come, and in the meantime you have all our best! You’ll be in our thoughts and prayers 🙏
Thank you so very much, I thought I was ‘used’ to being sick as I was born with PKD and have her endometriosis for 4 years. But this is just... another level.
I expressed my concern over the phone today that I’m being told over and over there is a diagnosis that no one will tell me about, but also being left until December. I cried at the Rheumatologist’s receptionist today in fact, as I’m in so much pain. She was a bit more sympathetic but again said she couldn’t say anything about ‘this diagnosis’ and that only my Rheumatologist could explain it to me.
I’m trying to remain positive but it is so very difficult when you’re in this much pain, and no one seems to be able to help you 😓
Wanheda, I feel so badly for your run around. Could you call and ask them to put you on a list to take any cancelled appts to get you in earlier? It is a lot for someone to have to deal with wondering about, esp during the holidays.
So sorry you are going through this. Secretaries can not tell you what the results are as they are not doctors and are not allowed to.
Have you gone to your GP and told them of your concerns? It may be possible for them to access something on line and if not help to put your mind at ease.
But please remember a secretary is not allowed to tell you of any diagnosis it's not their job and can get into a whole lot of trouble if they did.
We've all been in this position at some point and it's hell.
Good luck and try to keep as calm as you can, talk to your GP if you can.
My GP has unfortunately said the same thing, that’s what’s really worrying me if I’m being honest. I’m quite far away from my GP office so can’t actually go in person, just been having phon consults.
He’s absolutely amazing, first Doctor in 3 years that actually took me seriously. But even when I asked him about my diagnosis, he said that he was sorry but he couldn’t give me my diagnosis. It’s really really weird being told that by a GP, I think this is where most of my worry is coming from. I’ve never had such a vague phone call from him, I asked him too why exactly no one could tell me what ‘this’ diagnosis was. Again I was given “Your Rheumatologist will explain all of this, I’m sorry I can’t tell you more.” It’s really odd...
I know it’s only less than a month away until my Rheumatologist appointment now, but it just seems so very far away when I’m so sick.
Thank you so so so much for your comment again, I hope you’re doing as okay as you can be♥️
Think of it this way the consultant has a diagnosis of what is going on and is going to see you in a few weeks to tell you not days. If it was days I would freak out but weeks may seem like a long time but at least it's not years.
Try to avoid thinking about it, which is hard I know but all you will be doing is making yourself feel worse.
Yes the hardest part is the not knowing but now they have a diagnosis so hang on for a few weeks longer and think of it this way some are going through the process for years not knowing and feeling ill but are nowhere near a diagnosis.
I do understand how you are feeling it's scary and all you want to know is what they have to say. I'm one of the worst people as I'm definitely not a patient patient but there again I've been like that about most things. A bit like when I was a child and hated the run up to Christmas and not knowing what is in the parcel. Then as an adult being pregnant and not knowing if it's a girl or boy, at least now that's one suprise we don't have to wait 9 months for.
Please keep in touch with us we are with you every step of the way.
I feel so much for you being left to worry like this. I know that diagnoses, if known, can’t be shared with you other than by the Rheumatologist. My GPS are straight out about saying they know too little about our conditions and they need to be advised by a specialist.
Is there a chance your GP has a letter that hasn’t been copied to you? If so, you can ask for a copy.
Other than that, I can only suggest, as others have, is to speak to the bookings clerk and say you are available for a cancelled appointment before December.
This sounds so frustrating I'm so sorry you're having to go through this.
As Boudica says, secretaries and receptions can not reveal anything, this is why you are getting the "rheumatologist will discuss it with you " line. As for the GP I have no idea why he / she can't.
It must be so hard mot to jump to conclusions and assumptions, which is always a worry. You could ask for all letters, results and correspondence to be copied to you in the future, but this doesn't help now. Or even copies of you medical records, but that takes ages - your appointment will come first.
I guess the good news is that you have a diagnosis and this will hopefully lead to treatment and the right support.
My hosp has a rheumotology helpline. This goes through secretaries first but within 24hrs nurses or consultants will call back. Can you try that?
Hello lovely. It’s awful to have to wait with all your symptoms but please try to keep calm. Stress is a massive no no for lupus and will only make you more sick if that is what they find you have. You’ve waited so long already which is part of the lupus game too. I have lupus and suffered from endometriosis for 30 years, that too is worsened with stress. The receptionists are simply not allowed to disclose your results as they are not qualified and could give you the wrong information. Not long now and all being well you will be looked after appropriately. Keep smiling ! 😊x
My heart goes out to you Wanheda. No one should be experiencing this at your age. And no one should have to listen to people rolling out platitudes like 'At least it's not cancer'. My one piece of advice to you with regards to comments like that is to try to let them wash over you. Believe me, I know that won't be easy, but I've found it's the best way to deal with them and with people who seem to think it's a competition to see who's suffering most. I wish you all the luck in the world xx
I am so sorry that you feel so poorly and seem to be getting fobbed off. The sudden onset of palpitations is frightening. When I first experienced it I thought I was having a heart attack. It felt as if my heart was coming out of my throat. I put a smart watch on and saw my heartbeat race and drop. I rang my GP who said it was the morphine I was on?? I had been on it for years. I went for a pre op assessment and the nurse doing the ECG was concerned and called for a doctor. Three more times they took a reading before they said I was not fit for surgery. I was referred to a cardiologist, had an Echo, angiogram, and overnight ECG. They found nothing wrong. They gave me an under tongue spray and discharged me. I still get it but at least I now know that it is not going to kill me. I tell you this in the hope that it helps you because I know how scared I was. I truly hope that you get the help you need as soon as possible. You are so young bless you xx
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