LUPUS UK
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Quick update

Hi,

I had my second Rheumatologist appointment today with a different consultant and it was not great, I've been totally dismissed again. The doctor I saw first time round has retired and all that we had spoken about before seems to have been forgotten.

She told me she thinks I need to see a physiotherapist and all my problems are down to having a baby and exercising too much or depression. I tried to tell her the pain started before I started running again and the only pain I had during pregnancy was hip pain and digestive issues and I'm not depressed at the moment but she wouldn't listen. She then said I have muscle pain, don't get me wrong I have some muscle pain but the pain is predominantly felt in my joints. She said because all the scans and tests are clear there's no way I can have anything wrong and sometimes people never find out.

She has booked me in for an MRI on my hands and feet only because I kept asking her questions that she just couldn't answer, she seemed a bit stuck and embarrased. She said it's doubtful the results will show anything though. She said I might have fibromyalgia but only have a few symptoms of it, I asked her what I do about this and she said take paracetamol. They took some more bloods to check vitamin D.

I just feel like every time I see a good consultant that actually wants to monitor me and takes me seriously, I then get seen by a different one that is awful.

I'm seeing my GP on Saturday and I wondered if it's possible to ask her if I can get a second opinion? There is a Rheumatologist in Bristol that deals with Lupus and early signs of connective tissue disease specifically and I would really like to see him. Can I request to see a specific doctor, even if I have to go on a waiting list?

I'm feeling a little sad and disheartened and really don't want to have to go through the whole process of explaining the situation again. I also feel really cross because it's taken me a long time to get better after feeling deeply depressed and anxious and I am the happiest I've been in a long time. To have a doctor tell you it's stress or depression is really insulting. I feel like I'm hitting a brick wall over and over again.

Anyway sorry for the rant and thanks for reading.

Natalie.

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have you had your b12 tested?

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You can request a referral to where you wish if you are in England - not in Wales or Scotland though.

nhs.uk/chq/Pages/902.aspx?C...

nhs.uk/nhsengland/aboutnhss...

It is your legal right - if you are in England - so read the second link carefully if your GP gets iffy.

Either she is still a baby rheumy or she is discovering this maybe isn't the field she should have chosen - seems to happen a lot in rheumatology...

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She definitely didn't seem confident in what she was saying, which didn't fill me with confidence and she was very young.

She kept replying to my questions with nervous laughter which didn't help.

I know it might not definitely be lupus I just want to speak to someone that is confident in my diagnosis and what it can/can't be.

I have had my b12 levels checked and they were fine.

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It might not definitely be lupus - but it is something and you need someone with the confidence to rule things out properly. It really is pathetic to say "x, y, z is normal so there can't be anything wrong". I think the answer to that is "So you are insinuating it is all in my head?" - it happened to me, 5 years of pain and stiffness simply because my blood markers weren't raised.

The trouble with autoimmune disorders is there may not be an easy answer - but she didn't sound as if she was considering anything. I don't want the lab results treated - I want me as a patient considered.

You can ask for a referral where you like. Tell your GP that is what you would like please.

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Yes, obviously you can't tell what it is at this point (that's why you are seeing them), but you do know that it is not anxiety or depression. I so agree with you about how infuriating it is to get this response. Then I get agitated and start reeling off all the reasons why it isn't anxiety or depression, and I can see them sitting back and thinking, "Wow. He really *is* anxious!" Grrrr....just as i had to go through 3 months of incorrect treatment with ACE inhibitors and B blockers because my first consultant did not order a full range of investigations, you need to feel confident that your specialist is listening to your instincts and checking things out properly x

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It really is so frustrating, doctors convinced me last year that I was stressed and it was all in my head. It wasn't until I started to get lots better mentally and the symptoms were still persisting that my GP started to take me seriously.

She is on my side (most of the time) but I do wonder how much she can do and if she will get to a point where she will say she can't do anymore x

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I guess we all come to that point eventually i.e. there's a point where we have exhausted our own knowledge, so I don't mind if my doctor says that. The mark of a good doctor is that they admit it, and then say, "OK, so what do *you* think *we* need to consider next?" My respirologist was very good at making me feel that we were engaged in a joint effort to get to the bottom of what was going on. But most doctors seem to struggle with this - for them, patients are definitely not equal partners and they have a sort of "That's what I think - take it or leave it " attitude. x

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Did she at least have the grace to admit it?

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That's terrible, I hope things are better for you now. Did you get a second opinion?

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You can ask for a second opinion, but it's doubtful if you could be sure of seeing the actual person you mention - you could just see one of his team.I'm afraid the only way to be certain to see just him would be with a Private referral. I have done this in the past & have found it very beneficial, as even if the answer is the same, he will have time to explain why there is no further treatment needed right now.

But don't get too down down, we've all had Naff doctors at some point in our treatment,& sometimes if they don't see anything on their tests they let it go fora while....then reassess everything at your next appointment.

Hope it all works out for you.

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Thank you.

The person I would like to see is based in a different hospital, I think I would be happy seeing anyone other than the doctor I saw yesterday to be honest. Is it a lot of money to see a private consultant and can you then use the NHS once getting a diagnosis?

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Yes...tell your GP you'd like a Private referral to doctor you want to see. Then get the phone number of his secretary, at his Private Practice....& explain your position ..(she probably hears it very often)

She will give you some idea of cost....if you are in London it is considerably more than outside, but as a ball park figure it would probably cost£250/300....but prices can differ widely.

If there are any particular blood tests you want...ask your GP if you can get them+ results on NHS to take to a Private consultation..Blood tests can be expensive.

Once you have seen him....if more needs doing ask if you can transfer to his Rheumatology. Team on NHS.

Good Luck!

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Second opinion of course. Why do some rheumys just appear to know little, find patients a nuisance, or just tell you you're imagining things?

While being bi polar is not fun, I can at least give them a steely look and say my shrink has it well controlled. They have to think harder then.

I'm so sorry you're going through all this x

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Thanks Lupiknits. I went through a period when I felt like it was all in my head and went on anti depressants, had psychotherapy etc. It wasn't until being mentally well and having the depression under control that doctors would take me seriously. What they fail to understand also was I felt depressed and anxious because I didn't know what was happening to my body, it was scary and nobody could give me answers (they still can't). My gp calls me a medical mystery!

I'm glad you have the bi-polar well controlled and I hope you are well x

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Thank you. Sometimes with our health conditions depression can be "chicken or egg" but there is no excuse for dismissing anyone for something being "all in the head". Oh, except my ex who is an incredible hypochondriac. He always thinks he has something extremely rare. His GP has step marched him into therapy for it.

I do hope the rotters get you some decent help x

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You've had all your autoimmune panels run, correct? And your doctors went through the diagnostic criteria, ya? If they haven't, they should. Lupus is hard to diagnose. Can take years and each doctor deals with it in a different way.

As for the stress and depression - there is nothing saying that you aren't those as well. But, having those doesn't mean you don't have other issues. I hate it when doctors are "one but not the other."

IMHO - maybe you could take that step and talk to a psychiatrist. If you are having depression that will only negatively impact your immune system. I know it does mine and so many others. Sometimes to get to where we need to be you have to take an unexpected stop along the way.

For encouragement, the person who "caught" my autoimmune disease wasn't a Rheumy. It was a neurologist, which I was seeing for a compacted nerve issue. we got to talking, I opened up and she immediately got me to the right person. The other person was an orthopedist. So, you never know who might have the best insight! I say talk to whatever doc you can. someone is bound to figure it out.

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Thanks katidid.

Yes I have had ANA testing and Rheumatoid factor but I've never had a run through of diagnostic criteria. I've had higher than normal CRP tests on two occasions.

I do suffer with anxiety and depression but have it well controlled, I saw a psychotherapist last year and really look after myself. I'm in a really good place at the moment.

I have seen my dentist about mouth ulcers and I have spoken to him about my symptoms and the first thing he said was have you heard of SLE. He also got in touch with a friend of his who is an immunologist, who also suggested the same thing. I don't think I can go by the opinion of my dentist though, I feel a bit silly bringing that up with doctors. Hopefully someone will figure it out for me.

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Here are the criteria:

Serositis

Oral ulcers

Arthritis

Photosensitivity

Blood disorders

Renal involvement

Antinuclear antibodies

Immunologic phenomena (eg, dsDNA; anti-Smith [Sm] antibodies)

Neurologic disorder

Malar rash

Discoid rash

Next time you see your doc, just walk through it with him/her. It's the foundation on which all SLE diagnosis should be done and it doesn't take much time. All can be tested for with (1) blood work of imaging and (2) a physical exam and self report of symptoms.

Remember: you only have to meet 4 of the above to to get a working diagnosis of SLE. Also, I would factor in the psychological issues. I haven't yet met anyone online or in my support groups with Lupus that *doesn't* have depression and anxiety. My doc says he considers that part of the syndrome, unless there is another known cause.

Best of luck!

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Yes u can request to see whoever u want and the gp can refer you. I live up north now (used to work in Bristol) but I travel 1 1/2 to my consultant rather than see the useless local one!

In lupus X-rays show nothing! Lupus generally doesn't cause any joint damage! This is what annoys me the gps say oh well ur X-rays are fine and ur crp is fine so must be ok!

But my lupus specialist says that's how lupus is!! No point keep checking the crp as it generally isn't raised with lupus! All these X-rays and MRI tests can be normal but he says that doesn't mean that u don't have lupus! My bloods are positive and I have terrible joint pain esp hands and elbows (typical of lupus) but my hand X-rays are ok. But like he says that doesn't mean that nothing's wrong.

Just keep going and ask to see whoever u want x

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Thanks Sara, I will definitely be asking my GP tomorrow for a second opinion. I think the problem is because I'm getting negative blood tests as well they don't want to carry on seeing me, I might ask my GP if she can do some more blood tests too x

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You don't need to pay privately u have the right to see a dr at any hospital u like. U can pay privately for an initial consultation if u want to be seen quicker and then maybe they will continue ur care as an NHS patient.

Have u had the autoimmune and all the antibodies tested?

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Yes I have had all of the blood tests done. I saw my gp today and she said she wants to wait until I have had my MRI done and then she will refer me to the specialist I have asked for.

She agreed with me about the Rheumy I saw Thursday and is really trying to fight my corner which is something.

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Where do u go now which hospital? If u are wanting to go to Bristol? I used to live in Gloucester .

That's half the battle getting a gp that will help and take u seriously!

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It's good to have a gp that is taking me seriously, I know it would be really difficult if that wasn't the case.

I go to Cossham hospital in Bristol but the other Rheumatologist I would like to see is in Southmead.

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Yeah u can ask to go to southmead. I used to go opposite the eye hospital is that cossham?? It was so long ago!

Then I was seen by dr hickey in glos hospital who was good x

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Hi there, I was in a similar position. I couldn't get past a succession of GPs for 26 years and just coped with no support or medication for pretty much all of that time, apart from the times I was put on antidepressants, beta blockers, CBT... None of these ever worked yet every GP was so pig headed they still stuck to their belief it was all in my head! Last year I looked awful. Weight dropped off me (and I've always been slim so I looked anorexic) and I looked really ill. Was persuaded to go to GP who reluctantly ordered bloods and by some fluke also ordered the hla b27 test. I was positive. From this I (with a fight!) Got a referral. All other bloods were normal other than vit d. Even rheumy from the letters she wrote to my GP didn't think she would find anything. MRI of pelvis showed masses of inflammation - I have ankylosing spondylitis. I had actually gone to the GP with joint pain in knees, hands and feet - I didn't say anything about my back! I mention as you say you had a lot of hip pain during pregnancy and so did I. I am on this board as so many if my symptoms fitted lupus. However all the auto immune diseases seem to overlap hence difficulty in diagnosing. There also seems to be rather a lot of AI diseases!

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I'm sorry to hear what you've been through, it seems like a battle to get a diagnosis for a lot of people.

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I think it's just that so many of these diseases mimic each other and are hard to diagnose. It is frustrating when your bloods continually come back as normal but you know you feel anything but normal! Getting further tests is nearly impossible when the bloods come back normal. My inflammatory bloods are only very slightly elevated yet the MRI scans show masses of inflammation - so you may have to try to get tests to cover a wide range of diseases as it could be any of the AI conditions. It is annoying when they keep insisting it is depression / anxiety etc. and this is the main challenge. Even though I never scored highly on their silly score sheet the GPs would just ignore that and plough on regardless. Funny how they can't ignore normal bloods and think sero-negative isn't it?! But then I suppose that would go against their ingrained way of thinking!! Have you tried taking vitamin D and an NSAID for the joint pain? If you respond to the NSAID it shows there is inflammation (I got a bollocking from my rheumy for not taking the NSAID she prescribed as she said they were going to help her with the diagnosis - oops). When I did take them (I'm on naproxen) the effect was overnight. Wore off, but we upped the dose next time I saw the rheumy and so far it is going OK - off days sometimes but I now know that is because I am flaring then. My rheumy also didn't think she would see anything on the MRI (it was for completeness and because she was at a loss to explain my symptoms she told my GP) so don't be disheartened by that comment from your rheumy.

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Thanks for the reply jnmmum, it's the waiting that seems to be difficult. I feel like I'm getting somewhere then I'm pushed straight back to the beginning.

I haven't tried vitamin D or NSAID's but it's worth a go, thank you.

My doctor said on Saturday that not everyone goes by the rule book and there are people out there with negative blood tests so that's reassuring.

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Hi, sorry to hear that you had a bad appointment. The first appointment I had was with the infectious disease unit at a local hospital, my bloods were all abnormal, I went every month to be shown the blood tests on the screen all showing red. At that time I hadn't a clue what they meant, I don't think the doc did either. A year later, they said it was prob a new virus and hopefully it won't come back. Those blood tests have been lost in the system, I've moved twice to different regions. I just think if I'd been sent to a rheumy doc, they might have held maybe the info she required. They have tried tracking them down, but no success. Needless to say my mystery virus?? Showed its ugly head in a diff form a few months later, hence it has taken me 6 years for a diagnosis of MCTD. It's not the easiest of diseases to detect. Just keep a diary of all the things that happen to you as it will be useful throughout the journey. Stay well xx

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Thanks Lizard I will start to keep a diary, I have been meaning to do that.

That must have been so frustrating to have your blood tests lost. Did you have more blood tests done after those? xx

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Yes dozens, I just felt that maybe if they saw the first blood tests, maybe I would have got diagnosed sooner, I had them done every month and none of them were right, hence it took a year to discharge me from that department. I guess they were looking for different things. Was the second illness that my esr and crp were very very high and I have an excessively high RA factor in my bloods but I didn't have pain then so it was all a bit confusing for them. Wish I had a diary then as I had to do it through memory when I eventually got a good consultant to listen to me. I was in hospital at the time with a different problem. I seem to have been fast tracked everywhere all due to my respiratory consultant who wanted to know what was wrong with me. Can't thank him enough, I'm still attending him.

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That is part of the problem remembering everything at every appointment, I feel like I've explained my symptoms about 100 times!

That's great news about your respiratory consultant though, it's really nice to have a consultant that is willing to listen to you. I've met a couple of those but seem to be passed back to the ones that don't want to listen. It was actually my dentist that suggested lupus after telling him about the mouth sores and other bits he got in contact with an immunologist he knows and that is what was suggested.

I'm sure I'll get there eventually!

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I have been coping with symptoms for a very long time...I never really addressed them because although painful, I didn't consider Lupus...I honestly thought I was too old...if not for my rash..the worst one I have had in years(I do not get the butterfly rash) I had it biopsied and for some odd(to me) reason the nurse I saw did a lot of bloodwork...ANA VERY high 1:1280....skin biopsy showed Skin Lupus......Drs will listen to me now... I am so sorry you had such a dismissive appointment Hope you do follow through with a second opinion

my best xx

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Thank you leslie xx

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