Author Topic: Update - for Anita and anyone interested.  (Read 572 times)

MAT51

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Update - for Anita and anyone interested.
« on: December 08, 2018, 12:21:02 PM »
Hi there. Been elsewhere for a long while. Not flourishing but the opposite really with lots of GI probs at both ends and a horrible sticky cough and extra neuro symptoms - mainly shakes/ body trembles and total fatigue plus facial pain. Everythjng gets blamed on SS so they just shrug now as my PV/ESR  and CRP rise steadily.

They have decided that my Sjögren’s isn’t active because 19 months ago my nailfold capilliaries were normal. Weird way of assessing Sjögren’s activity but a useful way for Rheumatology to ignore me. My NHS university hospital is in truly dire straits.

I suspect the fact that my ANA has gone back down to slightly elevated and I no longer have joint pain or swelling (the two always synced for me) is probably the bigger reason. But my IgG and IgA are both very positive again, C3 very high - and I feel, frankly, lousy much of the time.

The good news though is that my new young neuro wants to test by blink for Trigeminal neuropathy and ganglionopathy and is keen to repeat skin biopsies once we see what these facial tests show. I was very frank with her and she had reluctantly agreed to not use the world functional in her notes or letters about me anymore.

I told her that functional is not a useful term and, while testing for rheumatic diseases, particularly lip biopsies, are increasingly being mothballed here and there are no specialist centres - just an overworked body of general rheumatologists - I feel it’s unethical to diagbose people with functional disorders. Just call mine bad habits born or numb feet, face and fingers and severe fatigue please! 

She was very nice and open minded although I think the functional thing is going to be harder for her to crack than my own bad habits of lifting my feet too high due to sensory Ataxia. But I’m working on mine so I hope she will work hard on tacking her neurolgist’s conversion disorder too ;)

I like her so much and and gave me so much of her valuable time that I’m minded to quit the connective tissue disease clinic (my rheum Googled neuro manifestations of Sjögren’s in our presence last time?!) and entrust my health and wellbeing to her.

Meanwhile I wonder if anyone knows anything about shaking/ tremors, intense pelvic and abdominal pain  and whether there might be a link with my recurring kidney infections and intermittent nights of huge amounts of thirst?

I don’t have diabetes. I am very dry in my respiratory tract (asthma/ reflux) so are these all part of active SS (despite rheum saying not) or should I be asking for other tests perhaps eg liver and kidney function. I don’t have raised WBCs and Amylase is normal, MCHC mildly low and RBCs always slightly raised (iron Anaemia?) but otherwise the only things that show up are CRP of 24 and ESR of approx 90- 100.

Not had electrolytes or LFTs or renal bloods done since August since I’m not monitored anymore as not on any immunesuppression. They are usually okay but I’m just wondering now if my shakes might relate to new liver or kidney probs? I’m booked for gastro to arrange an ugent gastroscope on 17th so would like to know what bloods to get done, if any.

I’m already on full quota of GERD meds and still lots of Gastritis and some reflux -on sixth course of abx for 5th kidney infection this year. 

« Last Edit: December 09, 2018, 11:51:04 AM by MAT51 »
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Joe S.

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Re: Update - for Anita and anyone interested.
« Reply #1 on: December 08, 2018, 06:53:08 PM »
I would be concerned about your kidney issues. Mine seem to be currently mending some. My shakes bother me as I can not anticipate any trigger.

I hope things work out for you. It has been a very long time since I have seen a rheumy. I have been working with a GP twice a year.
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MAT51

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Re: Update - for Anita and anyone interested.
« Reply #2 on: December 08, 2018, 08:54:55 PM »
Thanks Joe S. interesting that you too get the shakes. I’m not sure that the pee dip test was right about UTI and suspect lab tests will show for mixed growth but the antibiotic is very targeted to UTIs and I have had some relief from the worse of the pelvic pain and nausea since starting it. However I also wonder if this might not be related to an ulcer forming as I am meant to take my Ranitidine twice daily as usual plus PPI twice daily too. But I admit I can’t face PPI (Lansoperazole) so take a few over several days and then dump it.

So this could be the GERD but it’s a bit low down if so. I’ve raised my bed, gulp Gaviscon/ Peptac and atill waking up in the middle of the night with trapped gas and bloating, boiling oil feeling throughout my tract from top to bottom with thirst and nausea. I think I need to focus on ruling out some other stuff eg PBC and ovarian cancer just for peace of mind really.

Interesting that you don’t bother with Rheumatology for SS. It’s such a complex disease and yet the rheumy still seems at remedial school with it. I mean how hard can it be to work out that dryness in every pore of our bodies us going to have a substantial impact on us one way or t’other?
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Carolina

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Re: Update - for Anita and anyone interested.
« Reply #3 on: December 09, 2018, 10:05:43 AM »
Hi MAT51,

Your trials continue!  I identify so much with you.   

It is wonderful that you have found a reasonable doctor.  And I understand what it is like to have to 'educate' your doctors, but I'm glad you do.  Someone has to!

As far as doctors go, I'm pretty much at a standstill.  I have good doctors, and everything that can be done for me is being done.  That makes me sad since I have so much disability and pain/discomfort.   

But there aren't any treatments left for the damage my Immune Disorder is causing, I'm getting all that is available.  My current challenge is my osteoarthritis, and all that's left is surgery, which I'm exploring reluctantly.

Do keep us posted, MAT.

Regards, Elaine





 
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MAT51

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Re: Update - for Anita and anyone interested.
« Reply #4 on: December 09, 2018, 11:50:01 AM »
Thanks Elaine. Sorry you are so disabled and feel so pesimistic about everything health wise. There is so much focus on longevity in our society but to my mind we need to focus on quality not quantity of life. I’m a great fan of Atul Gawande’s Being Mortal. My therapy is in writing fictitious, sardonic letters to my doctors based on dark humour - plus making my artwork. Increasingly the two things work together and, along with loved ones, are my main source of wellbeing. X
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!