Confused by Rheumy appointment and everything else. Please advise? At my wits end 😓

[Nat1291]

Hi everyone.

It's been a while since I posted last. Alot has went on so I'll recap quickly:

- Positive Ana, Ena, C reactive protein, Ro and elevated platelets in Dec 16. Referral to Rheumatology. 33 weeks wait until appointment.

- Overactive thyroid discovered in June 17 when I got viral meningitis.

- Potential prolapsed disc in back. Referral to physio Sep 17. MRI denied.

So, I got refered to Endocrinology for the thyroid, I've had an ultrasound where they said the whole thyroid is affected. Then had uptake scan with radioactive Iodine. They've sent no results to my gp so I'm unmedicated. I called today and they can't find my results in the system. What a joke.

I went to Rheumatology, they took note of my symptoms and the consultant came and looked at me when I showed them photos of my butterfly rash and my medical diary. The result was that " While your blood tests are positive, they aren't positive enough so we'll redo the bloods and come back in 4 months. Take Amatryptalin in the meantime for the pain"/ " We'll refer you to dermatology incase it's rosacea on your face" / " You don't want a rheumatologocial disease, trust me".

I am completely crushed. The pain has been horrific and I'm having to go part time at work due to continual absence. I've been in hospital more times than I've had hot dinners recently and now I have another 4 months of agony to get through and no hope they'll help when I go back.

So I went to the Dermatologist, he had all my notes and did a very thorough examination. He told me I don't have rosacea but he suspects I have psoriatic arthritis due to the pain in my feet. However- He said this wouldn't account for my odd blood work and he suspects I most likely have Lupus too. He gave me creams and shampoo for my psoriasis and sent me home. I've got an appointment in November to start on Methotrexate.

I was in hospital two weeks ago with the agonising back pain, loss of bladder control and numbness in my buttock. I was promised an urgent MRI and admitted. The bladder control was new, but the terrible pain and numbness has been constant and unrelenting. I have paraesthesia in my legs and toes too. The consultant came and it was decided, without even so much as an examination that I must have a continually prolapsing disk. He said it will fix itself even though I've had this pain for 2 years and no pain relief has worked so far. He cancelled the MRI and I was sent home with the promised of physio (wait list of 16 weeks) and a weeks supply of tramadol. I call bullshit on this. It's disgusting as Prolapsed disks should heal within 3 months.

I've been put on Lyrica, Gabapentin, Dihyrocodeine, Tramadol and Amatryptalin. The only one that has worked to any degree is the Tramadol and that's all I've got for pain now. I've been told ive been refered to the pain management clinic. I've been waiting over 2 months and no word.

I already do physio exercises, massage and back rolling. Nothing takes this God awful pain away.

My memory is like a sieve too. I can't concentrate on anything and I'm constantly dizzy.

I feel like I keep hitting up against walls and I am so low. I honestly don't know what to make of it all.

Clearly something is very wrong but I just get pills thrown at me and sent home to wait months to be told to wait more.

When will this end? I have no life anymore and pain consumes every waking moment. The system let's me down constantly and I have very little hope of a proper diagnosis and the help i need.

Nurses and the Dermatologist are baffled as to the whole " Not positive enough" outlook Rheumy had.

Any thoughts? X

[SjogiBear]

Just a quick thought . . .

With the blood results - especially anti- Ro + - and in the absence of anti-dsDNA has the subject of Sjogrens Syndrome ever come up for you? nhs.uk/Conditions/Sjogrens-...

If this has not already been ruled out, then it would be worth having a chat with your doctor about it. Sjogrens is not just dry eyes and mouth!

[Nat1291 in reply to SjogiBear]

I think I have Sjorgens Sjogi Bear!

I just haven't wanted to mention it as I don't want them to think I'm a hypochondriac and wanting labels.

But I have every symptom of Sjorgens including the dry eyes ( optician has told me to get drops) and constantly dry mouth. Not to mention the blood work.

Should I mention it at my next Rheumy appointment?

While I may well have Psoriatic Arthritis I am 1000% sure I have an overlapping illness such as Lupus and/or Sjorgens.

I just want to get this managed as best as I can so I can have my life back. Without a proper diagnosis I don't have that hope.

Thank you for your reply x

[SjogiBear in reply to Nat1291]

Please do mention it at your next appointment as it's something that is often overlooked and a disease that can take many years to diagnose. If you don't mind a bit of medical jargon, this article will be useful as it lists the kind of criteria they look for in making a diagnosis - from what you have written, you do seem to fulfill those I'm afraid: academic.oup.com/rheumatolo...

Best of luck in getting a diagnosis. Lots of us on here are members of Lupus UK with a diagnosis of Sjogrens with or without the accompanying lupus so you will be in good company

[Nat1291]

Thank you so much ❤

This is exactly what I needed to get some more knowledge to back me up before I go back.

Fingers crossed it gets results x

[25clai]

After a long journey to diagnosis, I got diagnosed with positive RO antibodies, my first rheumatologist wanted to disregard the result saying my ESR levels were not raised, and ANA only weakly positive. I was like you , in total pain with significant gynae, bladder and hip pain. I would wake in the night with the pain in my hips, side and what felt like arthritis in my hands and arms. I waited ages for pain management clinic, when it came about they offered me a 2 week residential course ( I turned it down) , they told me to do yoga, exercise and take nortriptiline to sleep. The nortriptiline worked , but nothing changed. I managed to get a second opinion , by which time my kidney function was deteriorating.

I'm glad I did, as the second opinion confirmed severe Sjorgens . It was so great to have someone take me seriously, not look at me as an attention seeking hyperchondriac. (I also had a few operations which helped the pain too). Drug treatment has resulted in my pain decreasing, and I am have a better quality of life now. I advise you to seek another rheumatologist .

Good luck

[Hidden]

I seem to keep reading posts here and on other HU communities where Sjögren's just shouts out across my iPhone screen at me. It gets embarrassing to keep suggesting it - I keep wondering if it's just me perhaps?

So I'm very thankful to find that Sjogibear and 25clai have said it all first.

However I feel so distressed that many seem to be allowed to become so horribly unwell, facing this awful uncertainty. Or get misdiagnosed with RA or Lupus when Sjögren's is just as serious, is a progressive autoimmune disease that can destroy the thyroid and involve other organs and needs regular monitoring as a stand alone disease.

It also often needs the right specialist input from opthamologists, neurologists, endocrinologists, gastroenterologists, respiratory doctors, audiologists, oral medicine consultants, liver specialists, urologists, gynaecologists and ENTs.

And after all you have the antibodies and the symptoms for a diagnosis of a serious rheumatic disease called Sjögren's so why on earth are they taking this course of wait and see?

It's only when Sjögren's is put properly on the map and sufferers are diagnosed much sooner that proper research will actually take place. It's still the poor relation to other rheumatic diseases in terms of research and targeted treatments. And because effective treatments are sadly lacking they often don't bother investigating people for it.

I had an awful year with pneumonia and two lots of sepsis, drug induced pancreatitis and excruciating pain from small fibre neuropathy in 2015.

I was diagnosed at the time but with the wrong disease (RA) and was unable to tolerate the drugs (a common feature of Sjögren's I now know). But, unlike you, I didn't have the antibodies, although my ANA was a clear positive and my lip biopsy was 100% positive for Sjögren's last year. So it took five years to be diagnosed with the correct disease.

Rheumy no.2 discounted Sjögren's early last year because of normal Schirmers and salivary function. But I had been on steroids for six months and was using lacrilube and Hyloforte drops already. He simply shrugged about the neuropathy and autonomic symptoms because my ENA was negative. He tested me for Behcets several times. Yet Behcets is very rare but Sjögren's isn't?! Meanwhile widespread small fibre neuropathy, Sicca, inflammatory arthritis, liver problems, Raynaud's, Pancreatitis - a legacy of terrible teeth, GERD, Gastritis, paired bands in my spinal fluid, white matter on my brain - what about Sjögren's wasn't staring him in the face exactly when I walked into his consulting room?!

Thankfully rheumy no.3 in my third hospital was a very wise and experienced rheumatologist and requested a lip biopsy, CT and another brain MRI. Bingo - what a star!

I do hope that you can find his equivalent. X

[Nat1291]

This is so disgraceful! It makes me so angry hearing that people have waited for long, in agonising pain, while their bodies have disintegrated around them. Help could have been provided so much earlier!!

I have suffered with gastric issues since a teen- got a duodenal ulcer at 14, they told me it was appendicitis. At 17 it ruptured and I was very lucky I got to the hospital straight away. I now have a deformed duodenum and significant scar tissue. I now have a hiatus hernia and take the max dose of Lansoprazole every day so I can eat. I've had oesophagitis, gastritis and been on morphine for internal bleeding and grade B acid burns.

I have periodonitis of the lower gums and they have receeded very badly.

The thirst drives me mad, my mouth is so parched my tongue sticks to the roof of my mouth and I drink LITRES of water every day.

I have dry eyes and the optician was the one that spotted it- I thought it was eyelash irritation.

Renal profile has come back abnormal twice but then been fine when retested.

I have severe vitamin D deficiency that has never been addressed either.

I also had pneumonia and Pleurisy this year.

Not to mention the mental and sensory issues. I have it all well documented going back 2 years in a medical diary.

I'm 26 and feel like the crypt creeper 🤣

It's so disheartening when you know something is very wrong and you can't get help.

I'm glad that you have all found help eventually.

Should I tell them in January that I'm sure I have Sjorgens or do I speak to my gp now? Unsure on how to go about it.

Thank you so much for the replies. I feel less alone xx

[Hidden in reply to Nat1291]

Well now you say that you are 26 I'm even less surprised but more dismayed for you. I don't think Sjögren's is on the medical profession's radar for people under 40 or men - although all the Sjögren's forums are full of this age group and plenty of men too.

There is a young former Olympic judo player who spoke of her very gastric presentation of Sjögren's - and the shock the doctors had when, by complete chance, they found the antibodies in her blood.

She spoke about this diagnosis and her symptoms and self management a few months ago on radio 5 live - Sjogibear posted about it here I think. Can't recall her name but if you can find it and print off info about her for your GP then I think you might get the ball rolling by hopefully enlisting their support? Also the BSSA helpline would be useful if you haven't already tried them - number on the homepage of their website. They will be able to advise you how best to convey this to your doctors and hopefully send you info related to younger Sjögren's sufferers.

Hope this helps.

TX

[Hidden in reply to Hidden]

Sjögren's syndrome: 'I had the same illness as Venus Williams'

telegraph.co.uk › body › s...

17 Jul 2017 - Sjögren's syndrome: 'I had the same illness as Venus Williams' ... Emma Fletcher, 30, was a judo champion for Great Britain until ...