Tuesday, September 27, 2016

Dr. House, to the Inconclusive Room, Please

Hey, All,

So, it's been a while and that while, has been a whirl.

Since I last wrote, there have been not one, but 2 MRI's and another meeting with the prescribing bone specialist of those, the 14 x-rays and the array of blood tests.

I'll start positive, with the MPA-related GEM, as I have not seen this reading since June '13.

The reading?  A NEGATIVE ANCA titer!   (These are the blood tests used to monitor MPA activity.)

This is a beautiful thing and I'm still rather floored by it.

That typed, and to quote the Professor, "one can still have Vasculitis symptoms with a negative blood titer."

This new, lovely low, coupled with the stability of the kidneys, is a real good thing, MPA-wise.

Hoping hard that ye ole GFR continues to head back towards the 40's again.

Now, onto the many apparently non-MPA-related issues:

As mentioned in my last blog,  all of the recent bloodwork came back wonderfully normal, (aside from the usual, kidney-related never-normal levels, along with still too high uric acid and one other odd reading.)

I was tested right down to the HLA-B27 level, (a protein in the genes found in 80-90% of patients with certain forms of spinal arthritis.)

While all that is indeed quite awesome, the MRI's shed some light on something that until now, I had only known by the burning pain in the mid-spine which, as the day goes by branches out into many other joints, large and small, taking my chi with it and rendering me most days, firmly on the heating pad in bed by 7pm.

Now it's visible:
Basically, inflammation in thoracic and lumbar areas and lumbar disc degeneration was the MRI verdict, ruling out Ankylosing Spondylitis.

So--if I don't have AS, like the bone specialist says, why the daily grind?  And these long and weird-ass weeks when things for some reason amplify into even more intense spine pain, often femur aches, sciatic-like thigh-twangs and pelvic pain and increased aches in many other joints--often with all that, scream-out-loud Crohn's-like problems and strange bouts of extreme weakness, resulting in even more fatigue than usual.

But never any redness nor swelling in said joints.

In those times, the mini-dose of tramadol I can handle barely touches it.

I still wonder if I'm just at an early stage of that condition, (or some yet unamed similar one?)--as I have so many symtoms that line-up with it; the mid-day start to daily spine pain, which is now in to year-three, the cyclic IBD-ish problems, skin issues too.

My last meeting with the specialist ended with a frustrating medi-talk version of basically, I don't know, with him asking me to keep in touch and directing me back to the doc who sent me to him in the first place.

*dead air*

*some swearing followed by sighs*

*later, renewed meditation habits*

So, to sum up, after all the poking, scans and dipsticks, I still don't know the cause of these quality-of-life-threatening pains and problems--which since off prednisone have only increased.

And I must confess, this has all been a bit of a blow to my hope-resovoirs as frankly, I reeeeeally thought that by now, after the regular whining to any docs that listened about the back probs--that I would be finally be looking at some kinda treatment, but naaaay.

I also thought, that after all the chemo, prednisone, Rituximab and now near 6 months off pred, that I'd be feeling somewhat better by now, but nay too.

The bone doc did say that he would be consulting with my Prof again about everything and I will write the Prof soon to see what fruits may have sprouted from that.

For those wondering, due to these kidneys, my pain-managment options are few as the usual treatments, (anti-inflammatories) are off the table and I can only take small doses of opioids/ates due to allergy.

I asked the bone doc about acupunture and he referred me to an apparently tres tenacious specialist who is, very interested in pain.

Well, I've got a nice buffet for her waiting.

Appointment in a couple weeks.

And maybe she'll be able to help with these brain-melting migraines too, which also have been increasing since off pred.  Had one last night in fact and thankfully was up to pee and awake long enough to feel it bearing down hard.  I took a triptan soon enough to get away with only puking a couple hellish times before reaching the safety of sleep again after two+ hours in the melon-vice.

The bone doc and I also talked about gluten and he mentioned how a number of his patients have reported less pain on a gluten-free regime.

Even though I tested negative for Celiac's, I am seriously thinking about doing 3 months gluten-free as these flares usually happen every two months-ish, so if I don't have one while gluten-free, I will likely stay that way at least for another hopefully, telling and less-pained three months.

And I must say, even though we're still in the dark, I'm damned glad to at least not be looking at even more immune-system-smashing toxic treatments.

And so grateful that they found nothing life-threatening.

On another + note: even though this summer has been extra painful,  I still managed to redo another vault-song through it all, which is now ready to mix.

Annnnd, I am just about finished a new acrylic painting too.  I'll be sharing those soon, methinks.

I wonder, what would Dr. House do?

Funny, I joked a bit with the bone doc about that and he said, "The Professor IS Dr. House", and went on about his many paradigm-shifting Vasculitis research and accolades.

All digits crossed for a Housean-moment soon.

Oh and, if there's any medi-mages out there reading this going, "AHA!!!", please do drop me a line.




the echidna said...

Hi, this was my first encounter with your blog after someone in an MPA support group mentioned it to me. Thanks for your sharing. I was diagnosed with MPA affecting my kidneys a few months ago and was being treated with 100mg Cyclophosphamide and 60mg Pred daily, but from tomorrow my meds are changed to 100mg Azathrioprine with Pred reduced to 20mg. My eGFR currently around 33 but no major distressing symptoms. I've never been tested for coeliac disease but went gluten free a couple of years ago as I discovered that wheat contains a substance called fructans that was causing some IBS symptoms, and I have to say that many aspects of my health and well-being (excluding the recent diagnosis of MPA and CKD) improved as a result, including incidence of migraines.... And I suspect that a healthier diet and lifestyle has helped me deal with the recent turn of events too, so I'd suggest giving it a go, and hope it helps. Btw,I'm also an artist! Best wishes to you.

the echidna said...
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