Brick wall is bigger than ever

[BabyOleg]

I feel completely deflated. Seeing my rheumatologist gave me so much hope that I was going to find out what’s going on and start looking forward to some answers and possible some treatment to stop me feeling so awful. And now I have had it all blow up in my face. My rheumatologist was almost certain I have lupus/ connective tissue disease. Which although I don’t want it, gave me hope that there was some answers.

He was lovely. Very thorough, he said he will be keeping me under his eye as he feels my symtoms definatly lean towards an auto immune.

I waited for my results and letter from him only to read DIAGNOSIS: uncertain. - under investigation but reassuring results so far.

These were my symptoms - what he noticed along with photos of symptoms over time

Facial rashes,Eye swelling, mouth sores, dry eyes, hair thinning on top of head, hand swelling, joint pain, fatigue, weakness on right side of body. (I never noticed this)

My kidney function is now 60% so can no longer take naproxen or any other NSAIDS

my bloods have “returned” to normal limits.

Blood pressure on exam was : 141/101 - I’m normally around 118/70 - maybe I’m just overly stressed. Who knows.

So now I don’t no what to do. They want me to keep taking photos and report back to my gp as soon as I have any symptoms flare up so they can do more bloods.

I just don’t no if I can keep going on like this. Taking photos calling my gp having bloods only to find out my kidneys are crap and nothing else changed. Yeh my bloods go up and down but they never change enough for them to be concerned... so does this mean it’s all in my head. There’s nothing actually wrong?

I feel so trapped in my horrible body

Also.. the other day I was rushed up to a and e with a fixed and dilated pupil. It just happened. I couldn’t barely see through that eye and it scared me half to death. I was diagnosed with a brain virus affecting my optic nerve.... I’m fine now, except I kept getting ptosis (loss of function in my eye lid) - has anyone experienced anything similar and if it really was a virus why did they seem so unconcerned it had reached my optic nerve...

In all honesty I’m scared to death of what the next thing is going to be...

I uploaded a photo of my pupils just for you to see ... as you can probably tell from the photo I am exhausted!

[KayHimm]

Definitely not in your head!! A good rheumatologist can have a sense based on experience that someone is leaning towards autoimmune disease. Unfortunately, these diseases don’t always happen overnight. They progress. The rheumatologist noted things of concern in exam but has to watch for further symptoms.

I really feel for you. I was in this position and had no idea - pre-internet - what they were “watching.” He really does want you to report new symptoms to the GP. After a particular rash and fever, I was diagnosed with UCTD.

Just come here when you feel discouraged. In order to be properly diagnosed you do need to let the doctors know of new symptoms. They matter.

xk

[BabyOleg in reply to KayHimm]

I wrote to my gp on Friday, asking if they would call me to go through my letter. And ask them why my kidneys are only functioning at 60%, and whether I should be concerned, but they haven’t. I’m still waiting now....

I’m worried I am going to be forgotten now and left to suffer with all these symtoms alone. What if my bloods never show anything - I had pneumonia a few years ago and my bloods never showed any raised infection markers and I worry my bloods will never show anything this time round too... I live as a medical mystery permanently but I’m tired of it now

[lupus-support1 Administrator]

First, many apologies for not responding sooner but I have had no internet all day. Most of us have been where you are now: no formal diagnosis. Many woman don’t have a diagnosis for 20 years. I know this isn’t helping but you also know, you aren’t alone.

You have a good rheumatologist. It might not seem like it. To give a WRONG diagnosis is devastating. Your rheumatologist isn’t saying there isn’t a problem. Often, people have to wait if a patient has a lupus variant condition, the doctor will “watch & wait”. I saw 6 rheumatologists until I saw Dr Graham Hughes, who is the top lupus specialist but he didn’t diagnose me for 18 months of watch & see!

It’s hard. I know! I understand you want a diagnosis, but to be given a wrong diagnosis isn’t what you need.

The most important thing is whether you are getting treatment for your conditions, which is what a good rheumatologist will do. Many patients have “normal blood tests” & healthy people can have a positive ANA!

We are here to help you deal with all of this by talking. You need understanding and support & I promise you I am here for you.

I know you feel a variety of emotions & it’s good to let them out!

Please contact me any time! Once again apologies for not responding sooner.

With good wishes,

Ros

[BabyOleg]

Hi Ros, thanks for the reply, don’t worry about the time it’s fine x

It’s true what you say it would be awful to have a wrong diagnosis. I completely get that, and agree fully. I think for me i just thought that after 12 months of back and forth to the gp online (not once was it face to face) with photos, having bloods done, more photos more bloods, tablets to help me sleep, tablets to stop me itching, tablets to help the pain and multiple prescriptions later I thought finally after seeing the rheumatologist the cycle might be over. But it just seems to have started all over again.

More photos more bloods. Haha. Got to laugh really I guess I had such high expectations I really set myself up for failure.

The only difference now is because my egfr is 60 they have told me to stop all NSAIDS .. which unfortunately naproxen was the only thing keeping me reasonably pain free.

So I’m stuck. - I do wonder why they are not concerned over an egfr of 60 at the age of 31. That’s probably the only bloods to come back abnormal and they don’t care about that one haha.

I’m so sorry I’m totally blabbering.

Just wondered if lupus can affect your folate levels? I had levels of 1.8 - they gave me folic acid for 3 months (which gave me a little boost) levels are now 12. So there’s a positive.

Anyway. Hope you have a lovely day! Sorry for the small essay x

[RoseFlowerDew]

Hi,I wanted to say thank you for this post. I’ve stopped by from pernicious anaemia community and this sounds like my situation.I’m really sorry to hear that it’s not just me this is happening to.

Like you October last year I had hopes that a hard fought for appointment with a rheumatologist would finally get me answers. Unfortunately for me I have symptoms, take photographs, etc but except for several years ago, all my blood tests have been low or negative. Unfortunately I’m not even in the ‘uncertain’ so when I report things like hives on sun exposure, painful joints, chronic cough, inflammed eyes etc. to GP I get told I’m imagining it. In response I tell them that’s gaslighting. So frustration, despair and anger are companions whenever I try to get medical help.

But I’m really lost now because I’ve even paid for a private consultant with a pulmonologist for my 4 year chronic chest pain and he said it’s rheumatological but my GP won’t help. I am passed back and forth like a ping pong ball between chest and rheumatology with no answers. Just pain, coughing, etc continuing with GP being unhelpful and at times there are bad days. I’m even having a flare now with my eyes acting up but I won’t speak to the GP anymore. I’m trying to find a private consultant to help but don’t know who’s good.

So I really understand when you say you’re wondering when a name will come for what is going on. I’m desperate too for a proper diagnosis so I can finally move past the stupidity of GPs saying nothing is wrong when my symptoms most definitely are not only present but really bad sometimes and home remedies on some days seem like they won’t be effective answer forever.