HELP please

[Numptybrain]

Hi

I’m ANA negative was suspected of having sle lupus after a molar rash in my 40’s but rheumatologist diagnosed mechanical joint pain and fibromyalgia but from late teens onwards muscular skeleton pain. Now bilateral pleural effusion and pericarditis, respiratory have diagnosed Serositis. I have spinal and all joints arthritis and early osteoporosis, I’ve also had a subarachnoid haemorrhage which they put down to a venous bleed as no cause found, recently I’ve had swelling of my knuckles but my knees and ankles have swollen before. I’m due to see rheumatologist again 27/3 any advice on what I should say etc

Ps

Hysterectomy 29yrs due to uncontrolled bleeding

Thank you

Wendy xx

[Stills]

I have no answers for you but wanted to say hello. Each day is different, we’re all different but we are all here for each other

[Numptybrain in reply to Stills]

Thank you

[MusicalFurbaby]

Hi Numptybrain, my only advice is to take in a list of symptoms to your rheumy so you don’t leave anything out. Include even the smallest of symptoms; you never know what will be relevant to a rheumy. Also take any recent bloods etc., but be aware your rheumy may well want to repeat some of that testing too. Write down all your concerns and questions, and make sure you raise them. Your rheumy may not be able to address them all, but once they know your questions, they can work with you toward answers. All the best and please let us know how you go 🌻🌈💚

[Numptybrain in reply to MusicalFurbaby]

Thanks, it’s been years of waiting and knowing something just isn’t right.

[MusicalFurbaby in reply to Numptybrain]

I know, it took me eight years to get a diagnosis. Hoping it won’t take you that long! 🤞

[Numptybrain in reply to MusicalFurbaby]

It’s taken over 30 years now but hopefully with modern science and more issues I might finally get there.

Thank you

Wendy x

[MusicalFurbaby in reply to Numptybrain]

Oh Wendy, 30 years! That sucks 🫠 I can only imagine what you’ve been through in that time. Isn’t it horrible that we often have to get worse before they find anything, or believe us, or finally give us a diagnosis? I hope that is the case for you. Hang in there, let us know how it goes 🌻🌈

[Numptybrain in reply to MusicalFurbaby]

I know, I’ve had the facial rash swollen feet that felt like walking on broken bones, swollen knees, frozen shoulders, spinal issues cervical and lumbar, hand and wrist problems, a venous bleed on the brain, gut issues and now fluid and inflammation of the pleura of my lungs and heart. Absolutely crazy, 6 respiratory consultants have all said connective tissue disease and most likely cause sle due to Serositis. But, I’m Ana negative, surely this must happen? There must be sereonegative sle?

Wendy x

[MusicalFurbaby in reply to Numptybrain]

I haven’t experienced that, but I believe others here on the forum have seronegative lupus. A good rheumy should think of that, and should repeat testing too—false negatives can happen—but I’m sure you already know that! Bloods shouldn’t be the whole story, there’s so much more to disease than test results!

[dg70]

Funnily enough I had a SAH 12 years ago (age 41). No cause found but small amount of blood found in the spine. They thought it was meningitis for over a day. I have joint hypermobility, sjogrens and Lupus but at the time was undiagnosed. I often think did one of these conditions spark off the SAH, why was no bleed found yet all the symptoms occurred, crushing headache for 20 mins, vomiting, light sensitivity for weeks, neck pain for months, slurred speech, constant headaches, 3 weeks in a brain ward. I often worry if it will happen again but I confess I have paid for a brain MRI 5 years ago just to put my mind at rest. Mine came out of nowhere, I was resting on the bed. I was undiagnosed with anything at the time so I was just a mystery, I'm sure they thought I was a drug addict or drinker and didn't believe me when I said I don't do either. They mentioned venous bleed to me too. Can't be coincidence. I now know even if they checked for autoimmune at the time, I come up negative for all bloods except dsdna. At that time I guess they didn't do the dsdna blood test on me. It's tough having that crazy SAH brain and autoimmune. Don't give up on trying to get a definitive diagnosis. Took me 9 years after the SAH to get diagnosed with many consultant visits to many specialities before I hit the right one. Then you know you're not making things up even though GPs and doctors try to make you think you are. It's not just after effects of the SAH entirely. It's not ME or Fibromyalgia because it's a convenient box to put you in and put you away on a shelf somewhere gathering dust with no follow ups and next to no medication. I see you may have Rheumatoid arthritis which is a connective tissue disorder which causes inflammation throughout the body. That at least has follow ups and medication. I saw a talk recently from a Rheumatologist in Oxford and he said its hard to give definitive diagnosis sometimes, it may be that you just need to wait for more symptoms to appear before eventually getting a proper diagnosis. Sometimes its a waiting game. Took me over 15 years to get diagnosed from stronger symptoms appearing, mine increased with peri menopause then menopause. I really feel your particular journey and lovely to hear from a fellow 'SAH no aneurysm found' survivor. There are not many of us and we are so lucky we are still alive. Let us know how you go. Take care

[Numptybrain in reply to dg70]

Thank you, yes we are very lucky after a SAH to still be here, I take topiramate permanently to stop migraines now due to it but I have been diagnosed with Serositis with pericarditis and bilateral pleural effusion apparently it’s part of diagnosis for sle so it’s the waiting game till I see rheumatologist . Nice to meet you though, we are very rare.

Take care

Wendy xx

[dg70 in reply to Numptybrain]

nice to meet you too. I have hypertension tablets 8mg as I have high blood pressure anyway and they are known as being good for persistent headaches and migraines. I will say they do work pretty well. I hope you get a diagnosis soon. Keep a diary of symptoms.

[Numptybrain in reply to dg70]

Thank you

Wendy x