Feeling Frustrated!

[ScottishGirlGla]

Had my Rheumatology appointment today.

Went well prepared with lots of back up information but felt fobbed off before even half way though appointment.

Symptoms to date: -

Extreme lethargy

Joint pain (hips, knees, and right shoulder, lower back) and muscle aches – Left Hip replacement April 2019

Extreme sun sensitivity – leg patches [3 episodes – 2014 and 2015, 2019)

Occasional chest pains – mainly left sided (a/e visit – September 2018)

Frequent Nasal sores

Persistent headaches (nearly 4 ½ years)

Hair loss and Scalp pain

Overheating (not flushes)

? Malar rash October 2019

Abdominal discomfort

Asthma diagnosis (mild) – 2013 – get worsening symptoms in winter

Coughing up blood - 4 days (April 2019)

- xray showed inflammation

Weight Loss – ½ stone since April 2019

All this and with history of :-

Previous CT of sinuses showed chronic inflammation

Costochondritis ( raised incidence with those with autoimmiune)

Haemangioma on liver ( raised incidence with those with autoimmiune)

Two kids with ASD ( raised incidence with mothers with autoimmiune)

Also known precursors to autoimmune are :-

Teenage Glandular fever

Early pregnancy loss x 3 (all prior to 6 weeks)

Menstrual cycle problems [ Endometriosis for 15 years)

Family history of immune system illness [ parent with inflammatory bowel disease and who is diabetic)

Even if not LUPUS there must be something!!!

Last Bloods: -

Anti cardio lipin antibody +ve [ diagnosed 2016) – on aspirin

ANA + - 1:40 (v. mild)

She did do lots of bloods, urine screen, chest xray and has also referred me to ENT as getting lots of nasal sores with possibility of a vasculitis .

No followup UNLESS bloods are markedly different from before.

Am I crazy to just want an answer to why I feel crap most of the time??!!!!

[Staceylouise90]

Hey, you are not crazy whatsoever...

I’ve been going through a similar thing but seem to be on the right track 3 GPS and a phone call to rheumatology has said SLE based on my symptoms and a positive ANA ( raised ) and a positive dsDNA raised.

I am awaiting for my first appointment and reading this scares me I don’t get anywhere even tho every health professional I’ve seen this week says it can’t be anything else as I’m having issues with my left lung and think the scarring and thickening is the lupus attacking that along with everything else.

Have you had the dsDNA test done alongside your ANA?

I feel you pain, keep your chin up xx

[ScottishGirlGla in reply to Staceylouise90]

I had about 7 vials of blood, urine and chest xray taken today. Bloods have always been taken when am not having increase in symptoms ie. possible flares. When I had probable malar rash, see one of my last posts GP wouldn't do bloods as had had them done in August, they said was too soon.

That made ZERO sense to me as blood chemistry can be affected day to day by a dozen different factors.

When I had surgery in April I brought up blood from chest for 4 days which they now say was inflammation not infection as i was told SO have inflammation in lung, inflammation in sinuses and ALL symptoms like above YET bloods let me down. There must be something but will have to wait and see.

Thanks for your reply and support, hope you get some sort of resolution/diagnosis soon x

[Staceylouise90 in reply to ScottishGirlGla]

Bless you, sounds like you’ve been on a journey to get here.

I’m new this SLE/Lupus joined this week whilst I’m having a flare up as I’ve been told, so I’m trying to get my head around it all myself.

What is the rheumatologist next step, wait and do more bloods etc?

I’m guessing that the levels must changed depending if you’re having a flare, thankfully when mine was taken that was my last period I was poorly which is why mine was increased.

I don’t know how these tests work but the doctor I saw in hospital last night, said that if you test Postive for ANA and dsDNA double stranded that’s pretty much it, but what I’ve read online I think you have to meet so many criteria to get a diagnosis for example certain bloods and symptoms, have you got to go back and see them ?

Thank you xx

[ScottishGirlGla in reply to Staceylouise90]

I have a positive ANA but it is a weak one so they pretty much seem to treat it as negative. I also have a positive anticardiolipin antibody ( sticky blood)

Its pretty much been same for 4/5 years.

My symptoms have been worsening since 2014 and this last summer has been worse, just feel constantly unwell since July.

If you look on the lupus website and then look at my symptoms, pre dsposing factors, and previous medical history from my previous post on paper I am a walking checklist.

But doctors see Bloods and NOTHING ELSE

[Staceylouise90 in reply to ScottishGirlGla]

Yeah and again i think because you must of not been displaying symptoms at that point that maybe why it wasn’t raised enough!

I think you just have to keep pushing, mines been going on since a teenager, a lot worst this year, so many gp visits and tests and nothing has really come of it, and was made to feel it’s in my head.

Dont get yourself down too much, I know it’s easier said than done I’ve been like it all week. There is clearly something not right and your tests are displaying that and your symptoms. NHS I think we are grateful but they tend to long things out more than they need to be. This week I have never been so firm with all the doctors I’ve seen and spoke to, because this is your health and even to get help or medication is all you need. I hope you do get somewhere. Sooner than later... I really do x

[ScottishGirlGla in reply to Staceylouise90]

Yeah, and with regards to ongoing headaches which have been an issue for more than 4 years she said your CT was OK when they did it. My reply was a lot can change in 4 years

[Staceylouise90 in reply to ScottishGirlGla]

Exactly 4 years anything can happen, what I’d suggest is hold out on the repeat bloods untill you next have a flare up when everything seems to hitting you at once. That way you know that’s when your at your worst point and hopfully the bloods will be able to detect that. I mean few people said about going privately and if this isn’t resolved for my by after Christmas I will be saving the money and doing that if I can, maybe another option if you get no joy. I know it’s draining but any new symptoms or if you get bad keep going back to your GP because that’s your back up when you go back to see them and I think personally it will come to light it just will take right timing for the bloods to show and the right doctor. You know your body and I think if anything I’ve learnt this week is, health professionals and people make out your going mental and it’s in your head. It’s not, don’t ever think that xx

[ScottishGirlGla in reply to Staceylouise90]

Next time I flare totally demanding it as I've had enough. It is said that the median wait for a lupus/immune issue diagnosis is 7 years, I am at year 5 so maybe soon. Hopefully soon for you too

[Staceylouise90 in reply to ScottishGirlGla]

I would definitely do that, as soon as you get a strong they really can’t ignore it by more! Well atleast I think not anyway, I know it’s so bad I’ve been reading stories and researching this week and it’s crazy how long it takes for a diagnosis and how many people aren’t aware of it. Thank you fingers crossed if you ever need a chat drop me a message xx

[ScottishGirlGla in reply to Staceylouise90]

Also unless bloods come back abnormal no followup

[KayHimm in reply to Staceylouise90]

Your situation is clearer, I suspect, I suspect that with your lung issues and other symptoms, your GP suspected autoimmune disease. When your ANA and anti-DNA tests were positive, it makes lupus very likely.

Yes, there are criteria a person should meet. But they aren’t all equal. I am not surprised that the doctor you saw explained it in this way.

It is very complicated. Your doctors sound attuned and ready to move forward. It must be hard not knowing what was wrong with you and now getting a diagnosis of a chronic illness.

You have been very brave all these years.

XK

[KayHimm]

I know you are frustrated with all this, having been sick for so long. Wait until your tests come back. It sounds like the rheumatologist was eager to rule out some things.

Did he give an explanation for your positive ANA and anti-cardiolipin antibodies?

Take photos of rashes and document your temperature. It would be good to see your GP when you have symptoms.

Keep us posted about your labs. As others have said, they do change.

K

[ScottishGirlGla in reply to KayHimm]

The consultant said my last ANA was a weak positive and they don't really take that into consideration at that titre so as good as negative.

For my anticardiolipin antibody she said that may account for headaches and I am on Aspirin for that ( since 2016).

When came out in facial rash ? malar last month and had leg rash, different from previous GP wouldn't do bloods as had had some done in August.

I always take a pic of my rashes, took pics from as far back as 2014 today to appointment, symptom list, a diary of how I have been feeling in terms of flares over last 4 months, medical history in terms of precursors to autoimmune ie glandular fever as child, gynaecological issues, parent with IBD ( autoimmune related).

I also took copies of studies that show people that have haemangioma ( benign liver mass) are more prevalent if you have autoimmune.

Also the fact that both my kids have ASD - study to show that mothers that have auto immune are more likely to have autistic kids.

Even with all that it comes down to BLOODS and they aren't high enough.

Today had about 7 vials of blood taken, urine specimen, chest x ray and have been referred to ENT too as have constant nasal ulcers ( another autoimmune symptom) BUT she still says it doesn't sound like LUPUS.

[baba in reply to ScottishGirlGla]

"For my anticardiolipin antibody she said that may account for headaches and I am on Aspirin for that ( since 2016)."

You may need an anticoagulant e.g. warfarin, as well as the aspirin. For further information see

healthunlocked.com/hughes-s...

ghic.world/

[ScottishGirlGla in reply to baba]

Not had any actual clots. I was coughing up blood in April but that was put down to inflammation, no clot on scan so they want to continue on aspirin.

I don't think this will change unless I develop clots

[Hidden]

Hi am so sorry your not being taken seriously and honestly how many more symptoms do you need before you get a diagnosis. I have many but not all of your symptoms so I know how upsetting it is when your not getting a diagnosis and are being fobbed off. I have been with my rheumatology for almost 2 years and to say he’s useless is an understatement. When you go for your next appointment go to reception ask them to print out all symptoms of Lupus, Scleroderma and Sjögrens, fibromyalgia, CFS and MS if you think any other of these that could be the reason why your so unwell. Then you tick everything on that list. every symptom you have ever had then you hand it in with the rheumatologist and you ask could you have a Referal to an immunologist. Get back to your drs and tell them how unhappy you are and feel your not getting the right treatment nor a diagnosis and are struggling to cope. You keep a diary and you get all copies of every medical department. It can take up to 40 working days but I got my drs reports in 12 days. If they ask why you need them. Just say your memory is bad and they can be handed into any consultants and they will then have every thing on you and it will help future consultants. I did it and found all sorts of information and even 2 illnesses, that I was never told I had. You want everything in paper form so it’s easy to photocopy or a disk if it’s easier for you to store and print out. Also look at private hospitals with good reviews and look up consultants with a good reputation. If your not getting the help you need then it’s all about looking elsewhere. I have had similar experiences and got nowhere for so long and finally making some headway. Sadly they wait till your really I’ll and if your fighting to get heard it’s enough to make anyone have a complete nervous breakdown. I have looked also at alternative medicine which really worked for me. Have you thought of Chinese herbal medication and also looking at diet I suggest the Jason vale diet as it’s an excellent one. I have tried it with success and then started to get unwell when I couldn’t keep it up. something is making your immune system go into hyper drive so it can’t be left and the health care professional should do something about that. I really hope you get the care you need. They have a duty of care. Also with the drs try a trainee as they are more thorough and more eager it worked wonders for me as I now have a Referal to an immunologist. Also look up all the conditions on the internet as I have learnt so much from Dr Google and the lovely people on this site. Wishing you the best of luck. Please keep us updated on your progress. Take care. J😀

[ScottishGirlGla]

Even with taking my symptom list, loads of photos, a diary and 2 studies that correlate auto immune with haemangioma and having kids with ASD still didn't make her think autoimmune.

Sure - lots of people without auto immune have kids with ASD but I have 2 combined with all my symptoms which is like the lupus website checklist, endometriosis and glandular fever as child as precursors to autoimmune. Its just all feels TOO MUCH to be all co-incidental.

Also I don't get another appt at rheumatology unless my bloods do something. Its bad to want your bloods to be abnormal BUT I have had this drama too long for it to be fobbed off.

Thank you for your support, its appreciated x

[Melba1]

Sorry you've got so much going on and no answers. Like you say, can take years and sometimes (often) it's a case of finding the right Dr who knows enough and properly listens to all your symptoms, full history, photos etc. Bloods are only one small part and you already have a positive test that can be highly related to lupus. Whatever the eventual diagnosis, you can't live with all these symptoms without medical help and it does seems too many are connected to be coincidence.

Can you ask GPs to refer you somewhere different to rheumatology? Or go privately if you can afford it? If you put where you live, then people here can tell you rheumatologists/hospitals who might be able to help more - or at least try to help and not discharge you with no answers!

Good luck and keep searching x

[ScottishGirlGla in reply to Melba1]

Yeah but bloods seem to be the only thing they obsess over and it's taken long enough for my GP to refer me to rheumatologist to be fobbed off. However need to wait for all the tests to come through before make a plan

[Lizziequink]

You're definitely not crazy. I've experienced the same treatment from my consultant and now have an appointment in January with a different one at a different hospital and hoping this time they'll listen. As with Jeromicus, I have a large number of the symptoms you've mentioned and several additional ones including bouts of total confusion to the extent I don't know who or where I am when it happens. Keep fighting and good luck with it all.

[ScottishGirlGla in reply to Lizziequink]

Thank you, it's just frustrating that so may of us have to fight so hard to be taken seriously

[Lizziequink]

I have to say I totally sympathise having experienced the same response from 2 consultants who showed either lack of interest in or dismissal of the information about symptoms, family history or GP's opinions. Second consultant was only interested in information provided by the first which kind of defeated the point of a second opinion. I even had to request blood tests as none had been done since 3 months previously which showed ESR reading of 69. Keep fighting to be listened too. xx

[ScottishGirlGla in reply to Lizziequink]

Thanks, one of the appointments I am being sent to in ENT re; nasal ulcers has a waiting list of July and I was seen in November. Makes getting things like insurance tricky when you have to wait forever for tests

[Lizziequink in reply to ScottishGirlGla]

Hi again. I just realised that I'd mentioned my problems with my consultant in a previous reply to you. The January I referred to then was the 2nd consultant I mentioned as the appointment was changed to December. Take good care of yourself, from one Scottish girl to another xx