Wednesday, 27 December 2017

Rheum update

Image courtesy of http://bit.ly/2zcrsQE

If you were following my personal Instagram (@thatgrrlshireen) back in November, then you might have already seen that I had a little rant about my latest rheumatology appointment.

I'd been waiting a year for this appointment and after my last appointment went so well (as well as previous appointments with the same doctor), I didn't think this one would be any different. But, it was. So much so, I ended up crying with frustration afterwards.

I saw my rheumatologist on 3rd November. His clinic was running on time and wasn't particularly busy (just trying to set the scene and reason his actions)... My notes from my appointment last year weren't in my file either which didn't help matters. 

First and foremost, my 'borderline osteoporosis' is now back in to osteopenia levels. I'm starting to understand that the 'borderline osteoporosis' term might just be something my hospital has come up with as I can't find anything online about it, only that it's either osteopenia or osteoporosis - nothing in between. But either way, it's an improvement which is great news. He said something about it being within the 2% they allow for errors with the DEXA machine but I didn't really understand all that. I've listed the T-scores I have a bit further down. However, last year he spoke about starting medication if my bone scores did get worse by this scan but this time he completely back tracked and said he wouldn't want me on anything until I'm in my 40's now. 

He was really helpful with the pain in my left hip last time around and had diagnosed it as 'trochanteric bursitis'. I had hoped he would help with the pain in my right hip which has flared badly in the last year. Unfortunately, he wasn't interested in discussing that.

I also mentioned how the pain in my knees is so bad someday's that I can't walk. I don't think he even responded.

I had hoped to discuss my fibromyalgia more with him since I'm feeling so lost with it - especially after the lupus type rashes that took me to the doctors earlier this year. But after a short while, he cut me short and said he wasn't interested in discussing that!

I did, however, manage to get in that I can tell what pains are now due to my endometriosis (things were still very unsettled last time I saw him as my endometriosis pains were only gradually coming back still after having Hunter) and what is separate to that. For example, I told him that the pain in my shoulders is because of my diaphragmatic endometriosis, and that pain travels down my arms. And any pain in my legs is also endometriosis as it radiates downwards. The pain that is separate to my endometriosis is very much in my hands, knees and occasionally my feet. And I do get full body aches but I think I get that more when I'm very fatigued. Which I do get, majorly. But, anyway... When I mentioned about the pain in my shoulder being due to my endometriosis, he looked confused and asked why that would be. So I explained about the nerve that travels up to that area and how it's the same as with an ectopic pregnancy, which seemed to be new information to him. He then asked why the pain in my hands couldn't be endometriosis. I kind of nervously laughed and said "well... because you can't get endometriosis in your hands!?". He explained the same nerve runs down to my hands and so now he thinks that's all down to my endometriosis! I mean, I don't even know what to think about that! I've never heard of endometriosis causing pain in your hands and causing you to lose grip but... It's something to mention to my endometriosis consultant in January!

So, then he discharged me. No DEXA scans for 3 years and I'm only having one then because I quickly managed to get in about having the implant and I know before he's said that I need periods for my bone health. Otherwise, I wouldn't have been discharged with no further checks.

A letter detailing the appointment arrived early December and that was completely wrong too. For starters, it said that the 20mg Amitriptyline I take each day has helped. I had explained to my rheumatologist that it had helped but I was in so much pain still and some days could barely walk. The letter also states "Interestingly she is able to correlate her symptoms in her shoulders and arms with her endometriosis on the basis that she has been told that she has endometriosis of the diaphragm" - which is true. However, he's writing it in the sense that it explains the pain in my hands and wrists - which certainly does not correlate with my endometriosis pains. It also stated that the Nexplanon implant "can have an adverse effect on bone mineral density" because it "inhibits the action of progesterone" - whereas my doctor tells me it doesn't inhibit progesterone because it is progesterone and it doesn't have any effect on bone density!

I don't have my last set of T-scores or the full set from my most recent scan but the following is a run down of where I'm at now:

Osteopenia is diagnosed when the T score on a Bone Densitometry (DXA) Scan result is between -1.0 and -2.5 (as per criteria set by the World Health Organisation (WHO).

14/07/2009 DEXA scan results:

AP SPINE RESULTS:
Region L1-L4                T-score -0.8 (Normal)

FEMUR RESULTS:
Region Neck Left          T-score -1.0 (Normal)
Region Neck Right        T-score -1.2 (Osteopenia)
Region Total Left          T-score -0.5 (Normal)
Region Total Right        T-score -0.2 (Normal)


20/01/2012 DEXA scan results:

AP SPINE RESULTS:
Region L1-L4                T-score -0.6 (Normal)


FEMUR RESULTS:
Region Neck Left          T-score -1.2 (Osteopenia)
Region Neck Right        T-score -1.1 (Osteopenia)
Region Total Left          T-score -0.3 (Normal)
Region Total Right        T-score -0.1 (Normal)


03/11/2017 DEXA scan results:

AP SPINE RESULTS:
Region L1-L4                T-score -0.6 (Normal)

FEMUR RESULTS:
Region Neck Right        T-score -1.9 (Osteopenia)
(4% improvement on 2 years ago)

I saw my own doctor on 14th December and mentioned the appointment to her which she knew nothing about because they hadn't copied her in on the letter and she was shaking her head about it. She's now referring me on to a new rheumatologist which I'm really pleased about. I'm not expecting new results or anything but just a little bit of care and understanding wouldn't go amiss.

S.
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