“My Rheumy Rocks”

Yesterday, I saw my Rheumatologist, for the first time, as an NHS patient.

Okay, so maybe the surroundings weren’t as upscale as they were at  Brighton’s Montefiore Hospital where I had seen her three times previously.  I wasn’t offered coffee or tea, as I checked in at Reception, and the standing room only, Waiting Room did smell a bit like old newspapers and perspiration (not mine!),  but “HEY!” the building was built in 1828 and I wasn’t going to be asked to pay £155 for this appointment, so for me…

“It was all good.”   

She only made me wait maybe 10 minutes over, my scheduled appointment time; which is about the same length of time, I had waited previously, as a Private Patient.  Her examination room was about the same size; it was clean and orderly and appeared to have everything she’d need to treat patients; a working computer, an examination table, with a sanitary paper roll, a privacy curtain, cabinets filled with lots of “medical” looking odds and sods.  So, check, check, check.

So far, so good.

I had printed out my daily “How I Felt Today” journal (because, “Yes,” I’m a bit OCD), and I knew it would allow her to see (at a glance) what’s been going with me, since I tapered to 50 mg and then to 45 mg.  It included all the normal entries you’d expect from someone who has GCA & PMR and who’s been on high dose of steroids for 5 months;

• chest and upper back aching
• heavy arms & legs
• exhausted
• not sleeping
• fatigued
• feel “high”

• felt good

• jittery

• no energy

• arms and legs tingling and numb

• tinnitus more pronounced

• still feel tingling/numbness in feet

• felt shite

• arms and legs feel like baby centipedes walking around under my skin

• slept 9 hours

• numbness and tingling in feet, worse; feet feel freezing, but warm to touch

• right knee swollen, hurts like hell, cant extend or bend; GP thinks it’s a Baker’s cyst?

• aches across back; shoulder-blade to shoulder-blade

• had to take a nap for 1st time is a few months! WTF?

She didn’t seem too alarmed by anything she read…  She mentioned that I was still on “high doses” of steroids and a lot of what I was experiencing were either the dreaded “side effects” of Prednisolone or the equally dreaded “withdrawal symptoms,” from the Prednisolone.

Apparently it’s a lose, lose scenario; damned if you do… damned if you don’t.

She did however, notice the “swollen, non-functioning right knee,” which kind of surprised me, as I didn’t think that would be her area of interest or expertise.

Although… come to think of it, it may have actually been my 5′ 10″ rubenesque frame; wearing a black & white tee-shirt, printed with the word, “QUEEN,” (meant to depict my status, not the Band) across my (too old to be appreciated big bosomed) chest, as I did kind of lurch into her exam room…  That may be what got her attention, but I’m not sure.

My GP had said that she thought “it” (the uncomfortable, giant, lump behind my right knee) was a “Bakers Cyst,” and she had ordered an Ultra Sound, back in early March.  However, that appointment hasn’t come through yet.

That is one thing about the NHS;  you won’t pay, but you will wait!

Here in the South East, especially in a highly populated area like Brighton, the government cuts have crippled our beloved NHS.  Our Doctor’s, Nurses and Admin Staff are overworked and under paid.  There aren’t enough hours in the day to service the multitude of people needing care and/or procedures.  Our NHS Staff are stretched beyond capacity and are continually being asked to DO MORE WITH LESS.  It’s heartbreaking.

“Would you like me to take a look at the knee,” she offered.

“Sure,” I said, having no idea what to expect, but thinking “…isn’t she a Rheumatologist?”

Before I knew it, I had dropped my trousers, and she was pushing, prodding and commenting on the inordinate amount of fluid she was seeing and feeling!  She seemed intrigued.

I heard her say, “Do you want me to inject a little cortisone in there? 

“Ummmmmmmm, sure,”  I responded, with not a lot of conviction.

Again… before I had time to reconsider, she was spraying a cold numbing agent on my knee, and before it had barely touched my skin, she thrust in what appeared to be a HUGE needle (it could have been a Turkey baster); in any case it looked to be something they might use to inject cortisone into an elephant’s knee!

 “Let’s just take some of that fluid out first, shall we?” 

“Owwwwwwwwww!  Okay!” 

As she used her left hand to (not so gently) knead the fluid into the area where she had stabbed me with the turkey baster; while she used her right hand to manipulate its sucking functionality; carefully she coaxed the whitish/yellow/brownish liquid into the elephant syringe!

While she did this, she made sounds like, “Hmmmmm, and “Ahhhh,” and used words like “…viscid, gummy, syrupy.” 

What the hell was happening???

I was at the rheumatologist’s office, not an orthopedic surgeon’s office!

Several minutes, and three viles of yucky liquid later, it was time to inject the cortisone.  Thank goodness, at this point I was in shock and feeling no pain, so this part was a piece of cake!

Before I knew it, I was pulling up my jeans and wondering what had just happened?

I hobbled back to her deck and was told to rest the knee for the rest of the day and to ice it.  Okay…  that’s sorted!  Now, back to the business of PMR/GCA.

As we sat at her desk, she told me she was writing up a NHS referral for an Electromyography (aka EMG).  This test will provide information about the muscles and nerves in my feet and hopefully explain the pain, freezing cold sensation, and numbness.  She does not think it is related to the PMR/GCA, or that it is a side effect of being on Prednisolone.

So, “Wooooooo Hooooo,” it appears I may another, totally unrelated medical condition to have to manage and follow-up on!  …but cool, the suspected peripheral neuropathy, is on its way to getting sorted or at least identified.

She then wrote up another referral for a CTPA (a CAT Scan of the chest); requesting an “old school” contrast dye, that does not contain iodine. This was ordered previously, under insurance, but was canceled when they realised the iodine contrast dye could put me into anaphylactic shock!   Okay,  cool again, the constant cough, intermittent chest pain/pressure and palpitations on their way to getting sorted or at least identified/discounted.

Rheumy wants to see me to stick with the proposed taper down plan, see her again in 4 months, have my blood checked by GP every three months and she assured me that I “might” just start feeling like myself again, after I hit 20 mg a day…. that will be in  August.

It’s going to be a long, hot summer.   

My Rheumatologist may be a woman of few words, but she is all “action.”  I totally appreciate this.  She is knowledgable, decisive and confident; she doesn’t waste time waiting for things like ultra-sound scans, when she can see and feel an obvious painful, fluid build-up, surrounding a knee!

If you recall, I had had reservations about her practice a few months ago.  Her Admin was a quite snippy and condescending to me over the holiday’s when I was scared, had concerns and needed medical advice about my newly diagnosed PMR/GCA finding. Luckily, I have not had to deal with the Admin since and my Rheumy has proved herself to be “one of the good ones!”

I consider myself very fortunate, because I have read the horror stories about Rheumatologists who believe they “walk on water,” or the ones that “know better than  their patients,” about what’s going on with them.”   It’s a mind-field out there and thoese of us under the NHS, don’t necessarily get to see the specialist we’d like to see. For the  most part you go where you are directed to go.

So I have deemed today, “LOVE YOUR RHEUMATOLOGIST DAY,”  (but only if you truly do!)