I’ve finally had a write up from the NHS Rheum I saw back in October.
In his letter he explains to me basically what he said to me in my appointment, that he doesn’t believe I have any SLE issues (despite the blood work) but he does go on to list all of the symptoms I’ve told him, which I’m thankful for because at least now I have it in writing from a doctor and maybe now I don’t need to repeat myself.
Under diagnosis he has written
“Hip and Knee motor issues”
“No evidence of SLE”
“Non Specific Systemic Symptoms”
I’m not really sure how to feel about it.
On one hand he has said nothing at all is wrong with me but he’s also admitting that I do infact have systemic issues.. but hasn’t investigated further into it if he doesn’t think it’s Lupus..
Has anyone else experienced something like this? I feel like Im beating my head against a wall trying to get someone to listen to me.
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SadGirlRaceClub
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He does not state that nothing is wrong he states he does not see enough evidence to diagnosis SLE. Did you ask what might be the cause of your mobility and systemic issues for many differential diagnosis can cause those symptoms. Have you asked about other rheumatic and non rheumatic possibilities outside of lupus? You should.
He did say to me in person that there is nothing wrong with me, I think I posted about this on myinitial post which you also replied to
He simply suggested to me that “sometimes people are in pain and we have no idea why and they just have to deal with it because there is nothing we can do”
Ask for a second opinion and if the consensus is that there is not a rheumatic explanation ask about seeing an ortho clinic perhaps or a pain management clinic. Good luck.
I think that may be my next move. I had to request an x-ray from my GP, I told her that I’m not sure why no one has got me to have one before and she informed me that they only do X-rays if there is significant pain for a long time and I said is 8 years not a long time then? She didn’t have an answer haha x
Did you get a referral to neurology? If the rheumatologist doesn’t know then that possibly could be the next person to see, especially as your GP suggested it. Did the rheumatologist give any useful advice?
The rheumatologist didn’t suggest anything useful. Just that he doesn’t think it’s anything rheumatic and that there is nothing they can do for my pain, just going to see me again in a few months. Maybe I can ask to see a neurologist
It’s good that he hasn’t discharged you, which gives a slight glimmer of hope that he hasn’t totally given up. There’s no harm in asking if there’s anyone else who can help with what the actual cause is, so that you can get some relief from pain. Hope you get some answers soon. ❤️
A follow up in a few months is usually indicative of him believing something is going on or they want to retest antibodies to see if they were transient. Hopefully they will get to the bottom of what is causing your pain.
It is important to remember that lupus can take many years to diagnose. In some cases, lupus antibodies, dsDNA antibodies, do not show up on blood tests due to lower disease activity. You can find more information about this here:
It occurred to me that as you have a follow-up appointment with your rheumatologist, you might want to consider keeping a symptom diary between now and then, so that you can present a clear picture of what has been happening at your appointment.
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Still non the wiser 
Myositis - been wondering for a while if I’m experiencing symptoms of this 
Dreadful back pain, is this a symptom?
crazy symptoms and no diagnosis
