Second opinion?

[Littlemisssunshine87]

Hi

This is my first post so please bare with me.

Can anybody help me with symptoms I’m having and test results. I saw a rhuematologist yesterday who didn’t listen at all and completely dismissed my test results, diagnosed me with fibromyalgia within 5 mins - I’ve been unwell for over 3 years and seen many specialists that haven’t known what’s wrong, ongoing infections etc and then these bloods were done last month.

I was referred to Rhuematology following...

positive ANA

SS-A, SS-A60 was marked at 7.8AI (range <0.90AI) notes say ‘associated with SLE and/or sjorgens’

ESR 11mm/h (range 4-9mm/h)

Ferritin 427ng/ml (range 13-150ng/ml, all other iron studies normal)

Main symptoms

Fatigue - including post exercise fatigue

Light sensitivity - fluorescent lights makes symptoms worse, feel extremely unwell, had to leave my job

Feeling nauseous

Feeling hungover everyday/general feeling of unwell/flu type feeling

Eye problems - struggle to focus, dry, gritty, bloodshot, pressure behind eye

Headaches/migraines

Muscle aches

Swollen glands

Sore throat

Joint pains - hands wrist, fingers, left knee, feet - doesn’t last long, comes occasionally

Heat/sun intolerance - can’t sunbathe anymore makes symptoms worse

Raynauds

Chest pains, breathlessness, palpitations

Heartburn and acid reflux

Pins and needles occasionally in arms and legs

Increased thirst

Bloating, constipation, diarrhoea

Bruise easily on legs

Just to name a few!!

The rheumatologist was very dismissive, ruled out autoimmune disorders, basically said those results were meaningless because I don’t have a rash on my face and have no inflammmation in my body even though 2 bloods are showing signs of inflammation, she said because there wasn’t evidence in my joints on her physical examination that there’s non anywhere.

She wanted to prescribe me sleeping pills/anti depressants (I’m not depressed don’t need anything like that) offered me counselling, told me if I sleep and exercise I’ll feel better and sent me on my way. I was so shocked. It wasn’t the experience I thought it was going to be seeing as how they brought my appointment forward as they told me I needed to be seen sooner. My GP was so excited when these test results came back as we haven’t known what’s been causing me to be so unwell. I’m only 30 and my whole life has had to alter due to this, she’s the first consultant to basically say I’m depressed!

Family and friends are saying to get a second opinion, i may have to pay privately for this. I wanted to see if anyone on here could offer any advice please.

Thank you in advance and sorry this is so long I’ve even shortened it down 🙈

UPDATE 28/08/18.....

Managed to get in with my GP today she fully agreed I need a second opionion. She also agreed I don’t need pain killers or antidepressants. Feel very lucky to have a GP on side!

I spoke to her about going to see a specialist that works at the Kellgren centre in Manchester privately, she can get me in with a nhs appointment there for 18th October but I won’t know which consultant I will see.

My concern is that I won’t see who I would like and it will all go wrong again.

My GP’s concern is that if I go to a private consultant she feels they’re more inclined to diagnose something you may not necessarily have, but I don’t necessarily think that’s the case. I paid £300+ to see an endo at the start of all this and she happily just told me there was nothing she could help with.

So now I don’t know whether to just wait for this appointment or book private with who I want to see which is Dr Parker, he works half nhs half private at this hospital I’ve been referred to now but obvs I don’t know if I’d see him through my nhs referral.

I just don’t want to end up the same as this last appointment where I’m not listened to and fobbed off.

My GP said have a think and talk it over with people and let her know if I want to change to private.

[HedgeEnd]

Hi, sorry to hear you had a horrible appointment. I didn't feel I was listened to at my appointments with the rheumy either. First I was told fibro. This time he kept saying fibro the whole way through my appointment and even got me to fill in a fibro impact questionnaire and then, at the very end of the appointment, said he wanted to try me on hydroxy for 6 months for possible MCTD or possible mild lupus. I left feeling very confused. I have another appointment in December and if I come out feeling just as ignored and confused I am going to go private. Lots of people on here have gone private to get a diagnosis and have found the specialists far more knowledgeable and thorough. The problem is that some of the rheumys don't have much experience with lupus and the 'go to' diagnosis always seems to be fibro. I was put on anti-depressants for fibro too as it is one of the recognised drugs for fibro - don't think it made any difference.

Also, they do like to tell us we are depressed. I would definitely consider a second opinion as you have lots of symptoms and some abnormal bloods. Oh, and not everyone with lupus has a rash on their face (I think it's about 50%) which she really should have known.

Good luck x

[Littlemisssunshine87 in reply to HedgeEnd]

Thank you for your response. Sorry you are going through this as well it’s awful it’s happening to so many. I’m not surprised you left your recent appointment confused, it’s a positive that he’s maybe thinking of other diagnosis’ at least and I hope he has more helpful things to say in December. Has he done any further blood tests? Mine did do some more bloods but then said she’d see me again in 6 months to see how I’m doing so I don’t think she’s counting on anything coming back. She couldn’t answer a lot of my questions, some of it was just laughable. I have an appointment with my GP on 7th sept so will see what she says, hope she’s still going to be on side.

Good luck to you also x

[AgedCrone in reply to Littlemisssunshine87]

As your GP sounds to be sympathetic why don't you ask for a referral to one of the Lupus centres of excellence?

I am presuming you are in UK..there are centres in a lot of areas in England ......including London, Manchester,Bath,Birmingham,Cambridge.

For your peace of mind & if you could manage the journey it would be worth a long journey to get a diagnosis.

As HedgeEnd says a lot of people do resort to a Private referral, but if you could get to one of the Lupus Centres you may be able to get your treatment on the NHS.

Good Luck.

[Littlemisssunshine87 in reply to AgedCrone]

Thank you this is what I was thinking. Thankfully I live near Manchester and the journey wouldn’t be far at all. I’ve never had to ask for a second opinion before so I’m just not sure how the GP will respond, I hope she doesn’t just side with the consultant because she assumes she will know best but we shall see.

Thank you x

[AgedCrone in reply to Littlemisssunshine87]

Just calmly say you would just like to make sure......after all left untreated Lupus is no laughing matter.

In MancHester the Lupus Centre is the Keligren Centre. At Manchester Royal Infirmary...I got these details from Wendy39's letter to the Welsh NHS.

Good Luck Little Missy! Let us know how you get on.

AC

[Littlemisssunshine87 in reply to AgedCrone]

Thank you so much, will definitely update when I’ve seen my GP

X

[whisperit]

Welcome Littlemisssunshine87

We're not really in a position to make clinical judgements here. However, on the basis of what you report here, I would strongly urge you to get further clarification. On the face of it, you would seem to have clear signs of a systemic auto-immune disorder - for example, as you rightly highlight, SS-A [Ro] antibodies occur in several auto-immune disorders, including Sjogren's Syndrome and SLE, and the raised ESR suggests inflammation. If your ANA is significantly positive (say, a ratio of at least 1 in 80) that would be a further indicator. Raynaud's is in itself an auto-immune disorder, so in addition to the symptoms of chronic fatigue and joint pains, it would seem to require quite some explaining to rule out autoimmunity at this stage.

As a second set of questions, I would question whether you have been fully assessed for depression - that too should not be seen as a 'default' diagnosis and in any case may be secondary to an auto-immune problem.

Perhaps this rheumy had good reasons to exclude the apparently obvious, but she clearly did not satisfy you. That in itself should be enough to require a more careful and sensitive consultation. My inclination would be to make sure you see the letter that this rheumy sends to your GP as a result of her assessment, and book an appointment at the earliest opportunity so that s/he can go over it with you. If you remain dissatisfied, then you'd be fully justified in seeking a second opinion. Please don't feel b ad about this, or unusual either! most of us here have struggled before finding the correct diagnosis - SLE and all the related conditions are devilishly difficult to pin down. Courage! X

[Littlemisssunshine87 in reply to whisperit]

Thanks for your response.

I don’t know my ratio for my ANA I have every other result with numbers and info but all that one says is positive, I shall ask my GP when I see her on the 7th sept. I certainly don’t feel I’m depressed... frustrated definitely, but I’ve kept pretty positive throughout this whole journey. Yoga and meditation have helped with that also. I was so hopeful for this appointment and it was a big let down. But on with the fight. Never give up x

[Lisalou19]

Same story, different person 😔 sorry you have entered this battlefield.

I have put myself through counselling, I’m still unwell . Have tried anti Depressants, did not experience a good day on then, I become flat line, no ability to laugh or cry. On my good days, I have really good days.

Although I’ve deep down known I didn’t need much of this, I have done it, also went for a mental health assessment. They didn’t cure my illness but they are things I can tick off the list. I guess I can also say I’ve attempted methods of self help.

Unfortunately if an auto immune disease is present, they are very difficult to diagnose. I’ve sat in front of a doctor covered in rashes and snore on my nostril and he stilled seemed baffled.

What I have learnt is just how rare these diseases are and many doctors do not have the experience, not through lack of interest, the lack of patients that they come across to further gain knowledge.

I think with this mindset, you could possibly seek a referral to a specialist.

X

[Littlemisssunshine87 in reply to Lisalou19]

Hi Lisalou19 and thanks for your response. It’s crazy how many people this is happening to as well. Totally get you doing things to get them ticked off so you can say you’ve tried them and they can concentrate on getting closer to the right thing.

I’ve tried amitriptyline before, it really didn’t suit me, I think I lasted about a week on it, i was in so much pain on it, was awful. Thankfully got told to come off it and it’s been marked on my records as a bad reaction. I also tried 5-htp to see if that be a more gentle natural approach but that didn’t agree with me either. My body must not like my serotonin levels being increased.

It has definitely felt like a battlefield throughout my illness. Asking for help and no one can. You’re put in a one size fits all treatment plan instead of going off your individual symptoms...I have horrible light sensitivity and she wanted to put me in a gym environment and exercise (sigh) it be like a form of torture for me.

Keep fighting x

[Shorthouse]

Pissed of and depressed are completely different drs don’t understand auto immune illness at all I believe they are overwhelmed So many of us out there. Become a boring heath freak it all helps good luck x

[Littlemisssunshine87 in reply to Shorthouse]

Definitely frustrated. You show any form of emotion like that and you get ‘ohh I think you’re a bit down at the moment aren’t you’ no I’m annoyed! I once said to a consultant, if someone tells me I’m depressed I’m going to hit them, it got a laugh at least. I’m on the health freak train already, can’t drink even if I wanted to makes me feel worse, juicing, better diet, supplements, yoga, all that jazz!

Namaste x

[HedgeEnd in reply to Shorthouse]

I love the way you put it and totally agree!

[Hidden]

There is no laws to fine doctors, who knew someone had AID but dismissed to cut the cost., currently...

[jimbo1605]

Hi, Get referred to or self refer to a specialist in autoimmune disorders. I can personally commend Dr Kaul at London lupus centre london bridge hospital. Within the first consultation they should be able to diagnose and produce a plan and prescribe. Lots of other folk are available - depends on where you live.Good luck keep up the fight.

[jane1964]

Hello I just want to say if you feel your doctor isn't helping you enough then don't give up keep asking for someone to listen. I nearly did, it took me 4 referrals from my GP and 5 rheumatologists over a number of years to get anywhere near diagnosis despite already having a proven autoimmune disease of the liver.I was also told at one point it was fybromyalgia which I was never convinced by. I finally found a consultant to help me about 6 months ago by which time I was really quite unwell I turned out to have sjogrens and also vasculitis but my symptoms were unusual and that led to doctors not beIng sure what was wrong.I needed to find a doctor who was confident enough in their abilities to order more tests which then found antibodies missed before, damaged and enlarged lymph and salivary glands.I am now on immunosuppressants and feel so much better.Its so hard to keep fighting when you feel ill but hopefully you will get someone who will listen.I found taking photos of rashes, and sores as well as symptoms diary chart helped as doctors seem to give more weight to objective proof than what patients say (a mistake in my opinion.)I hope you get answers more quickly than I did.Its hard but hopefully you will get there in the end .Jane.

[Littlemisssunshine87 in reply to jane1964]

Thank you Jane. Definitely not giving up and will keep fighting for this. I’m glad you finally found a good dr who could diagnose you properly and that the treatment is helping, it’s just a shame that it took all that time.

I broke out in a body rash just under a year into this, I was told this was pityrisis rosea though. I have always been susceptible to heat rashes as I have very fair skin and I’m blonde, although since all this I’ve come out in more painful lump type rash that needed hydrocortisone, which I do have pictures of. Living in the north west of England you get a lot of cloud, although we have had a nice summer up until this month. I’ve kept out of it this year as know how rubbish it makes me feel and have worn a higher factor suncream for when I was in it. I used to be able to lay in the sun all day before this even though I am fair, never had a problem with light of any kind before this. I’m like a zombie if I’m in it now, sucks the life out of me.

X

[panda2]

Hello, and welcome,

I would get a second opinion on this. You've got way too many obvious symptoms. You have all my markers and even one more with the ESR inflammation, which I don't have. Yet I am diagnosed with Connective Tissue Disease (UCTD) and I am being treated with immunosuppressants fairly successfully. It's made all the difference with the light sensitivity. I'm ANA positive 1:640 (considered high), SSA/Ro+ and very symptomatic. The sudden sun and the sudden digestion issues being the worst for lifestyle. I also began to get rashes, but they are on my forearms, no butterfly rash or anything on my face either.

I saw 2 consultants. First a Neurologist because it was in my nerves with tingling and 2 episodes of feeling as if I was burning alive from inside. My GP suggested private referral. Turns out, it should have been a Rheumatologist, but I was most grateful for the consult nonetheless. The Neurologist confirmed there was definitely something wrong based on those blood results and that he believed I either had Lupus or Vasculitis or both. When I did see a Rheumatologist back on the NHS months later, all of the other blood tests and nerve testing had already been done by the Neurologist, so we were able to jump right in where he left off.

I'm frankly surprised that your Rheumatologist would dismiss clear blood markers. Also, my Rheum told me that SSA/Ro+ antibodies can be very specific for uv light all alone, even if there are not enough Lupus or Sjogrens markers. And if it's SSA/Ro+ all alone causing the symptom chaos, that can still be treated with Hydroxychloroquine and potentially stronger immunosuppressants. Thereby giving you your life back.

I do truly hope you are able to see someone else. It's a definite yes from me. : )

Panda x

[Littlemisssunshine87 in reply to panda2]

Wow Panda thank you so much for that info on the UV light. That certainly would make a lot of sense. My light sensitivity is one of my worst symptoms as it’s so life changing, dictates where I can go etc makes me feel so unwell. I’ve always said throughout this that if something could help with that I’d be able to do so much more. Do you mind me asking who is it that you see? X

[panda2 in reply to Littlemisssunshine87]

I'm so glad that these words were a little help.

I couldn't agree more that sun sensitivity is one of the worst symptoms, because of exactly what you say -- it is life changing. Suddenly last summer I couldn't be in sunlight outside, even with clothes covering every bit of me as the sun was creating a burning sensation right through. I eventually found some 'utensils' though to get me through the waiting time until the meds began to kick in. Then I could not actually believe that the immunosuppressants actually worked! I had to take both the Hydroxychloroquine and now Mycophenolate in order to feel a marked difference. The Hydroxy did not work on its own. However, I was ecstatic when the Mycophenolate Mofetil did, since I had started to believe I was going to be resigned to using a child's uva/b umbrella and stupid expensive uva/b blocking clothing and hats for the rest of my life. The sun coming through the glass on seating in our sitting room was torture, so I used the umbrella inside as well. Looks silly, but it worked and my friends and family soon got used to me. I have driving gloves by Coolibar. They take the edge off if you're in a hot car for any length of time and have to be the driver. Once on meds (if you are prescribed some), you will still have to be extremely careful in the sun because it's more dangerous if you're on immunosuppressants on top of it being dangerous for anyone with CTD, but covering up and using sun screen for that reason is way way better, in my opinion, than the burning sensation and what the light does to me symptomwise.

If you live anywhere near Cornwall, just PM me and I'll give you my Rheumatologist's info. Otherwise, a Lupus centre of excellence like one jimbo1605 suggested might be an idea? And do take pictures and time-lines of everything with you as Jane1964 mentioned.

Hope you get some help as quickly as possible.

Panda x

[Littlemisssunshine87 in reply to panda2]

Goodness, that really does sound awful, I’m very lucky compared to you I don’t get that horrible burning pain, I just feel really weak, fatigued, achey and just generally sick and unwell from it. Fluroscents and even just bright bulbs can affect me and have prob been worse for me, don’t know if that’s because I’ve been exposed to them more, I.e not much sun where I live. Can manage about 10 mins in a supermarket with sunglasses and hat before feeling extremely ill and needing to leave. Never had any sort of reaction from any form of lighting in my life before this. Used to sunbathe all day on holidays with absolutely no problemd. Not now tho. I live near Manchester so will ask if I can go to the lupus centre of excellence there for a second opinion X

[panda2 in reply to Littlemisssunshine87]

Yours sounds equally awful! Not being able to manage the light in shops! And it also sounds suspiciously similar to how many report their sun/light sensitivity and that it creates unwellness after. It was definitely strange when it came on for me too, as I also had no problem with the sun or heat before either.

Good luck in Manchester!

x

[eekt]

Similar story - I refused the anti-depressants that my GP was still trying to force me to take even after a postive dsDNA.

The lab usually automatically does the dsDNA if the ANA is positive (in the UK): the lab comment on my dsDNA result is 'postive dsDNA is highly predictive of SLE'.

If the dsDNA hasn't been done then auto-immune illness hasn't been completely ruled out. Doctors are supposed rule out ALL organic illness before resorting to the lazy, default 'depression' diagnosis.

I think GPs can order the dsDNA - definitely worth asking about to narrow things down.

Looking on the bright side, you seem to have had the misfortune to see one of the less enlightened rheumatologists, so do ask if you can see a different one!

Keep us posted, and stay strong! 💪 There's lots of support here on this forum! xxx

[Littlemisssunshine87 in reply to eekt]

Yeah that test was on with a list of others that the lab automatically did once my ANA was positive. It came back negative. Would that be why the Rheum dismissed the others?

Everyone is so lovely on here I feel so much better from everyone’s responses I’m so grateful. I’m really glad I posted I was a bit apprehensive. It’s nice to have this support. Will definitely be updating everyone.

X

[eekt in reply to Littlemisssunshine87]

Negative dsDNA only makes SLE less likely - does not rule out all auto-immune illnesses! There are 100+! But the Rheumy you saw seems to be a duffer..

Stay strong xxx

[Melcw]

I went private when I was having the investigations for my liver and it was a total waste of time he tried to tell me I was taking too much lansoprazole and nothing else was wrong and charged me £160 for the privilege thankfully after some research I was referred by my gp to a hospital with specialist interest and came away with a very distinct diagnosis of 2 autoimmune liver diseases

A second opinion definitely worked for me trust the nhs and look for the specialists that understand the conditions that way they can categorically say yes or no and you’ve got less chance of being misdiagnosed

Good luck xx

[Littlemisssunshine87 in reply to Melcw]

Thank you. May I ask how long it took to get your appointment on a second opinion? From what I’ve read it can be quite a long wait as you’ve already been seen.

X

[Melcw in reply to Littlemisssunshine87]

It all started in January and I’m still not done with all appointments yet unfortunately it does take time but persevere with it xx

[KayHimm]

There is a good article titled « Tired, Aching, ANA-positive: Do you have lupus or fibromyalgia? It explains the many factors that rheumatologists take into account when diagnosing. Patients do change. But a low positive ANA without certain signs of inflammation would not be considered lupus at this point. Do not minimize the diagnosis of fibromyalgia. It is known to be life-altering.

[Kristyhunt]

Hi Helen

Please do not ever let the personality traits of some specialists get to you. I would definitely get a second opinion. As a family we had to travel interstate for our daughter to gain the correct diagnosis (Lupus Cerebritis) and we had undertaken and received similar frustrations to you. Sydney were able to identify on brain scans joined with bloods and symptoms within weeks. Please definitely continue seeking opinions from different specialists until you are satisfied. You know your body better than anyone. Don’t doubt yourself- as with any profession, you just need to find the right specialist. Unfortunately there will be some doctors along the journey who do not possess the knowledge to help you - so keep looking. Take care.

[nanleighh]

Hi Little Miss sunshine, Is she really a rheumatologist? Because if she is she should know that a small percentage of people with lupus have the rash on their face. True, it does take a long time to diagnose. It took them 10 years to diagnose me, but you have multiple lupus symptoms. I have pretty much all the symptoms you have except for ranauds I do not have that. A little background on me, I am a retired nurse in the US. I have been around physicians long enough to know that they are human beings that make lots of mistakes. Some of them are very good, some mediocre, and some think they are infallible and very arrogant in their diagnoses. It is the great physician that can say I don’t know, let’s watch it and see, or let’s do more testing, or even better, Let’s send you for a second opinion. I am sorry you are having to go through this. Many of us have walked in your shoes. My advice would be to keep a list of all your symptoms, pictures of any rashes. Go to lupus UK website and see all the information and pamphlets, they are very good. And I wish you the very best of luck. XO, Nan

[Littlemisssunshine87 in reply to nanleighh]

Hi Nan,

Yeah I would much rather a dr say they don’t know, it’s beyond their expertise rather than just guess something for the sake of it. Thank you for your kind words and well wishes x

[Heather77619]

I have NEVER had butterfly rash, but positive for lupus by testing multiple times.. I have to donate blood every 8 weeks to avoid blood thinners, secondary to SLE. I have same symptoms daily and sometimes worse. I would DEFINITELY get a second opinion. I choose not to take medication as much as possible, which I would suggest to others as well honestly. Eat clean, exercise, I do take CBD oil for pain and heating pad, tens unit. I have also been a nurse for 18 years and have seen too many side effects of meds.. so, I am just trying to help. Feel free to reach out to me, I'll tell you the horrible way I was diagnosed.

[Josieswolf]

Sorry your experience was so bad. She sounds like a moron. You definitely need a second opinion. Good luck hugs sent to you. Don’t give up. Xx

[Chanpreet_Walia LUPUS UK]

Hi Littlemisssunshine87,

Welcome to the LUPUS UK HealthUnlocked Community!

I am sorry to hear that your appointment with the rheumatologist was not how you imagined, as you are not satisfied with your rheumatologist, you are entitled to ask for a second opinion. We published a blog article which has a section discussing how to change your consultant, you can read this at lupusuk.org.uk/getting-the-...

As I am not medically trained, I cannot comment on your blood test results. Your symptoms do resemble those associated with lupus. Especially: light sensitivity, flu-like symptoms, extreme fatigue and muscle/joint aches and pains. There are certain criteria and tests that need to be met in order to make a diagnosis of lupus, to find out what they are click here lupusuk.org.uk/getting-diag...

Below, I have included some information links which I hope you find useful:

Raynaud’s phenomenon: lupusuk.org.uk/coping-with-...

Managing Fatigue: lupusuk.org.uk/managing-fat...

Joints/muscles: lupusuk.org.uk/pain-managem...

Light-sensitivity: lupusuk.org.uk/coping-with-...

Please keep us updated, wishing you all the best.

[Littlemisssunshine87]

Update for everyone, not sure if this is how I’m meant to do it so will edit my post as well to include it...

Managed to get in with my GP today she fully agreed I need a second opionion. She also agreed I don’t need pain killers or antidepressants. Feel very lucky to have a GP on side!

I spoke to her about going to see a specialist that works at the Kellgren centre in Manchester privately, she can get me in with a nhs appointment there for 18th October but I won’t know which consultant I will see.

My concern is that I won’t see who I would like and it will all go wrong again.

My GP’s concern is that if I go to a private consultant she feels they’re more inclined to diagnose something you may not necessarily have, but I don’t necessarily think that’s the case. I paid £300+ to see an endo at the start of all this and she happily just told me there was nothing she could help with.

So now I don’t know whether to just wait for this appointment or book private with who I want to see which is Dr Parker, he works half nhs half private at this hospital I’ve been referred to now but obvs I don’t know if I’d see him through

my nhs referral.

I just don’t want to end up the same as this last appointment where I’m not listened to and fobbed off.

My GP said have a think and talk it over with people and let her know if I want to change to private.