Mixed Connective Tissue Disease and sometimes mother DOES know best…

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My mother has been harassing me for months to go see her GP.  It has been constant nagging.  Six months or more of nagging.  Because her GP has RA and Lupus and she ‘can help me’.

Yeah, right.  Just because she has these diseases doesn’t mean she can cure them.

But she was relentless. I often say I’m the most stubborn woman in the universe.  But no. I’m not. My mother is.  And she was driving me nuts.  So finally I gave in.

I saw this doctor last week.  I brought my records and copies of scans and labs and I was ready to tell her the whole story.  From the beginning.  Which is hard work!  I hate seeing new doctors, and starting over and talking about all the stuff again.  It’s difficult. Its emotional.  It involves remembering a lot of things I’d rather forget.

And it’s exhausting.

I needn’t have worried, I barely got a word in edgewise. My mother had told her all about me. And my mother’s best friend, who also happens to have lupus, and also happens to see this doctor, had also told her all about me.  Anyone here heard of patient confidentiality? No?  Nevermind…

I listed my medications, she asked a few more questions, to which she didn’t appear to listen to the answers and then told me she was going to start from scratch and ordered a truckload of labs.

Ok.  Fine.

She told me to go to the hospital immediately, and get the bloodwork done NOW.  And then come back in one week.

It’s a good indication of my pain and fatigue levels lately that I did exactly as she said.

She called me two more times that afternoon, to confirm answers to the questions that I didn’t think she’d listened to.  Then she told me to go back to the hospital and get more blood drawn.

I’ll admit, I wasn’t thrilled.  But I did as she asked.

Again. Desperate.  Loads of pain.  If somebody wants to help, I’m going to help them help me.

I saw her this morning and got some of the results.

And wonder of wonders, I’m seropositive this month!  A positive RF.  That’s only the second time in 10 years, I think.

Also ANA positive, speckled pattern.  Very suggestive of Lupus. Along with the Raynaud’s, Malar rash, poor kidney function, arthritis, esophagitis and all the rest of it, SLE (systemic Lupus Erythematosis) is a gimme.  Then you add the neurological signs, peripheral neuropathy and low white cell count and things get more interesting.

She got on the phone and got the head of Immunology at Canberra Hospital on the phone for a chat about me.  Just like that.  I started to get a little impressed.

They chatted and ran through my bloodwork.  They accessed all my previous scans and labs.  They discussed scleroderma.  My doctor asked the head of Immunology if I were HER patient, what would she do.

Run more bloods.  And get a high contrast chest CT.

I’ve had pneumonia several times.  Twice I had it and didn’t even know it.  Once it was really bad.  I had a collapsed lung.  I have some scarring on my lungs.

I have been breathless for a few months now.  I always feel like I’m not getting enough air.  I regularly need to take ‘catch up’ breaths.  Walking up a flight of stairs leaves me gasping.  I haven’t got the stamina or fitness I once had.  It’s more than rheumatoid arthritis fatigue.

And I was a very fit person, regardless of the arthritis.  Spin classes are zero impact, easy on the joints, and very good for cardiovascular fitness.

But I’m not fit anymore.

My kidney function has been poor for many years. It’s not critical, but it’s not great.

My blood pressure is high.

All my usual doctors just ignore these things. They are just used to them. They are just ‘normal’ for me.

But some of them are serious.  This doctor listened to my chest and told me the sounds she is hearing are NOT asthma.  She’s hearing crackles and she told me to get the CT tomorrow.

She’s like that though – do it NOW seems to be her catch phrase.  I kind of like that though. She makes phone calls and gets things done.  Even though she’s not that forthcoming with what she thinks is going on.

I did hear her say to the Head of Immunology that she agrees, and her diagnosis is Mixed Connective Tissue Disease.  And the head of Immunology said I am a very complicated case. And she is interested in me.  Frankly, that’s a doubled edged sword.  I’m looking on the upside though.  Heads if departments taking an interest is more a good thing than bad.

And Mixed Connective Tissue Disease is my original diagnosis.  My first rheumatologist diagnosed me with MCTD back when I didn’t fully meet the criteria for RA.  It’s a crossover disease of rheumatoid arthritis, Lupus, Scleroderma and Polymyositis.  And for me, there’s Sjogren’s in there as well.  I also have Hashimoto’s Thyroiditis, and while that’s another autoimmune disease, it’s not directly related.

As the years have gone on, I have had more and more organ involvement and damage.  More and more co-morbidities.  More and more complications.  And I don’t respond to the traditional RA treatments.  And not a whole lot of joint deformities or erosions.  Just swelling and severe PAIN.

This doctor said that’s because I don’t ‘just’ have RA.  There’s a whole lot more going on.  I knew this. So when she came to the ‘correct’ diagnosis, I realized my mother is right.  (Damn it! I hate when that happens!)

So does know her stuff.

So I guess I trust her.

She prescribed me meloxicam (Mobic). I have taken it before. It didn’t do much for me.  I filled the prescription, but my gastroenterologist told me no more NSAIDs. Ever.

So I’m not sure what to do about that.  Meh.  I’m inclined to follow this new doctor’s treatment plan.  And I’ll go back and see her next week for the next round of test results.

2 COMMENTS

  1. That sounds like a very thorough MOT ! My new rheumy is like that – she’s cut through all the bs and tested, diagnosed and treated things that I’ve been ‘putting up with’ for years. Def a keeper – I’ve had a ‘query MCTD’ ‘diagnosis too – not too sure where we’re with that at the moment but it makes a huge difference to my confidence to have a new rheumy who ‘gets it’. My old rheumy was good but I had three locums in the two yes after he left and everything went to pot with my health:-( I hope this marks an upturn in your treatment and day to day health, you certainly deserve to catch a break! x

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