I have been reading with great interest whisperits last post on his visit to the sleep consultant and also Twitchy's last CTD appointment. Both just show basically what a mess we are all in with regards to treatment and help as we fall helplessly between all specialities. It is the rare medic who sticks out his neck to be counted.
It is not difficult why many of us actually begin to wonder if we are clinically depressed as living with this is basically a nightmare. The myriad of symptoms are overwhelming and totally out of the conception of most of our friends amd family so we feel isolated and desperately clinging on to any kind of hope.
I joined this forum a few years ago and I honestly dont know how I would have survived without it.
I post very rarely as I have no brain anymore and even typing out something simple brings me out in a sweat with the effort.
But I thought I would write this update and especially to thank those folk out there who do post regularily about their journey.Their stories are a life line.
My variety of "thing" has always been seronegative something, Sjogrens and Lupus like.
It affects my pancreas , biliary and gastric system, Kidneys, Heart, Muscles and tendons, Eyes and mouth etc etc but also brain, big time!!! The brain is the scarey one for me as it is worsening and very like MS. Numerous brain scans have been clear so far though.My feet are permanently numb and I am now getting severe spasms in my foot tendons that are very painful.
I also have Addisons, adrenal insufficiency which was always there mildly for many years before steroids. This makes me prone to alarming drops in cortisol levels when under stress such as infections or falls and cuts.
Despite the negative bloods, I had a few years of remarkably enlightened consultants who kept each other in the loop and worked together on it. They are all retired now and my GP said, you don't get doctors like those anymore, everyone is too specialised.
I have been fortunate now to be given over to a good Rheumy at Glasgow Royal and am awaiting two more appointments with a cardiologist and gastroenterologist also at the Royal, at least I will be under one roof with some of the problems. My local area though is south Ayrshire and I only managed to squeeze into Glasgow area as I was previously a patient there with the pancreas problem. In Scotland now I was told by my GP that they are unable to refer to a different health board other than where you live.
Only a consultant is allowed to do that.
I had my first visit a couple of weeks ago and the Rheumy was friendly and positive and very much wanting to work with the other pair once I have seen them. All hopeful ,but will there be anything more they can actually do?
For almost four years I have been on a regime of three monthly steroi injection and oral daily Prednisalone.
Like many folk I am very drug sensitive and the oral steroids seem to make me have all the side effects of sweating amd flushing, yet not much benefit. The injection on top ,every three months is very helpful but the last four weeks until I get it are scary. And that is where the brain comes in, or not!!
I suppose it is what they call brain fog, but I feel almost out of my body , like an observer looking at this dumpling of a body stumbling about, bumping into things, dropping everything and forgetting absolutely everything immdeiately. It is like having no brain at all.
Organising a drawer , or packing a present brings me out in a total sweat. In fact a drawer or room cant be organised at all, full stop. I also loose the ability to read as my eyes keep jumping about, nystagmus , they call it ,so I cant focus.
This brain aspect, improves about 80percent within a day of the steroid injection and I become me again for a few weeks. The other symptoms improve only slightly.
The only time I had almost total improvement of everything was after an injection of dexamethasone injection, a strong steroid after a neck operation seven years ago. I was told this was too dangerous to try again.
I was unable to tolerate hydroxichloroquine as it went for the biliary system .
But, they all, even the present new consultant, warn me of steroids long term, of the dire consequencies I am cooking up for myself .
What on earth are we to do??? Without them I may as well not be here and most certainly would be seriously clinically depressed.
They have repeated all the bloods two weeks ago but all the immunology is not yet back, though the ANA is now more mildly positive than it was before. I didnt even know it had been slightly raised before as they kept shtum about it in case I got carried away and coming to wrong conclusions that I had something.
I suppose we are all heart sink patients all of us unless we come under clearly defined categories and positive blood work of the correct kind. Even Twitchy with her many areas of high blood results does not fulfill the precise criteria for decent and effective treatment for her Sjogrens.
It is all like a nasty Christmas board game and a total lottery for all of us here struggling with the hand we have been dealt.
But, on the other side of the coin we have this forum, with positivity and sympathy in bucket loads . Here is the real Christmas spirit where we can laugh and cry with each other and reach out into the abyss with hands joined!!!!!
All the very best to everyone here this Christmas .