Yes a testing time in more ways than one. Sorry, sorry couldn't resist the pun. Pun, what pun? Read on!!!!
I went to see my Doctor on Friday. I had received a letter from my consultant and wanted to go and discuss it. In short the consultant was confirming Functional Somatic Disorder (which is an umbrella of conditions – none of which I appear to have) . . . and saying that as far as he was concerned any further investigations into my symptoms would be fruitless . . . and then he waffled on about Cognitive therapy and clinical psychology . . . blah blah . . . .berlimey!
Mmmmm as I read the letter I had cartoon visions of me being casually thrown onto the medical garbage heap, wildly clutching at an umbrella. My feelings are that I don't fit into ME, not really, or Chronic Fatigue Syndrome, or anything else under the FSD umbrella. Then again as my previous rheumatologist had said to me when I asked about ME etc – he said oh they are just labels given to people when we don't know what is wrong with them!!!!! Terrific. Interestingly my IBS also under FSD has cleared up since I stopped eating wheat! So there goes another one of those illnesses with no know cause for the symptoms . . . it depends where you look.
So I was a bit wound up when I went in to see the Doctor on Friday. HS came with me – whether to support me, or protect the Doctor from my chainsaw I wasn't sure.
All change . . . we had a long chat with the Doctor and in short he doesn't agree with FSD diagnosis either. He says there is evidence of inflammation in my body (which the consultant denied) and his feeling is that given the fact I already have two autoimmune diseases (Hashimoto's and Dry Eye disease) the likelihood is that I have one or more other autoimmune diseases causing my flu like symptoms. He feels that I need a diagnosis, a prognosis and a way of coping . . .I feel I need wine, chocolate and a roll up. He said there is no point going to another consultant in this area as they will just all agree with each other!!!!! So I am now going to Nine Wells hospital in Dundee to see another Rheumatologist (apparently they deal with most of the autoimmune diseases) for more tests. I have been warned it could be another long haul – more waiting, more tests and yet more waiting and no guarantee that they will be able to find out what is wrong. So may be no further forward at the end of it, but at least my Doctor isn't giving up on me and shoving me under an umbrella on a garbage tip.
We did discuss M.E. - in his view true M.E., not to be confused with Chronic Fatigue Syndrome has symptoms which can be tested for and is a recognisable disease - actually recognised by the World Health Organisation . . . something I know Hopping Moon and Tumbling advocate very strongly, but not all the medical profession treat it as a real disease. He also felt I don't fit into ME or CFS . . . yes I have similar symptoms, but I don't have the extreme fatigue, or muscle weakness and I can mostly walk an hour every day which ME and CFS sufferers can't . . . I talked about my concern about my shrinking world and he has suggested that he sends me to see a clinical psychologist to help me deal with what is going on . . .yup love clinical psychologists – I wanted to be one. He also said that it was a vicious downward spiral ie if you go out and feel unwell then you will be less keen to go out next time. True. But I used to find that if I pushed through my symptoms I was ok . . . then over the months I have become less and less ok and yes now I am wary of going out . . . not sure it is a downward spiral though, just that I am actually feeling unwell when I go out. Tricky one. Having said that I have just booked up with Wizzard to go to the Scottish Finals of the SCDA One Act Play in Inverness for three days – so I won't give up pushing the boundaries. Interestingly my Doctor said he didn't believe in CT therapy in my case, or that a course of this would make the symptoms magically disappear . . . Full of surprises my Doctor. He also said that if he did feel that there was no point in continuing looking for a diagnosis for my symptoms he would tell me. And I would listen. And I would trust him.
So back on the merry go round and off the garbage heap and not an umbrella in sight . . . .WHOOP WHOOP.
17 comments:
Ww, this sounds so much better. I gather that your Doctor is a listening doctor. That is the kind of doctor that would pass my test!
Scottish Finals sound like fun, too.
xo
So glad your GP has listened; really hope this leads to something more positive for you
xx
Good for you. Good for your GP. And good for the wheat free diet, which seems to be working. I am so pleased that you feel that you are no longer going backward (medically) but that there maybe a prospect of a cure on the horizon at last. Though the wheat-free is really quite a break through, isn't it? (My money was always on diet/herbal treatment). What goes with gluten allergy - are there any linked allergens?
Very interesting to read the 'facts' about you below. I guess you were a chainsaw waver even then. But I couldn't bear to work for someone else either. I've been self-employed for 26 years now (long time) and employed for 14.
Anyway, glad you are a happy, at least a happier, bunny. Let's all push the boundaries a little!
More promising from Dr ? then.
Looking forward to our weekend away
LAH
Wx
OK explain dry eye disease...s it both or just one? and definatly WHOOP WHOOP
so glad to hear you have a decent listening doctor who is taking things seriously. Let's hope they can come up with something and a sensible strategy for dealing with it. I am interested that the wheat free diet helped with the IBS. I am getting surprisingly good results from increasing my soluble fibre intake, mainly by eating porridge!
Your doctor sounds like a canny lad.
I could never see you on the garbage heap! Glad the wheat free is helping - my daughter has IBS and suffers quite a bit. Glad your doctor is prepared to take the trouble to find out what your real problem is.
Well that sounds a bit more positive - the picture of you falling onto the medical scrap heap holding aloft an umbrella was all too Ally McBeal - and you're not at all a shambles like her! Glad the wheat-free diet is helping, so very hard to do but worth it. I have been trying some gluten-free bread recipes for you but all totally disgusting so far, will keep looking for new ingredients!
So glad you are not on the garbage heap, didn't think you were destined for it yet any way, have answered your question re: Freemartins on my blog, thought they might be a query on that one
Oh flipping heck, just had a funny thought. I have a very dear friend who is a clinical psychologist and she often works in Scotland (as a locum, she's based in Italy really - yes yes, mad I know). How very bizarre if you saw her.....if she's small, Italian and waves her hands around a lot, ask her if she's Marisa and how are the guinea pigs?
I too am so glad your doctor is listening and also not just trying to get a diagnosis but help you deal with the day to day.....
loads of love and whoop whoop indeed. jxxx
Phewwww! Good for your GP and good for you for hanging on in there and refusing to be thrown away. (I am a bit jealous of your chain saw though - sounds a useful addition to the tool box of wine, choc and roll-ups!).
Cripes, your poor old head must be spinning with it all, WW. Dealing with feeling cr*p is bad enough, but now it would appear you have to sift through a minefield of stuff on top of all that - and try to determine the wood from the trees all the time. Hope the Dr in Dundee can help get to the bottom of it all. Wishing you love and healing xxx
Perhaps it's the chainsaw that scares them all off from tying down your diagnosis?? Just a suggestion ...
Had to say no no no to House being formulaic (re y our comment on E's rotwatch). It is so funny, and he, Hugh Laurie, just sublime. Apprentice is unmissable - but I DO have a sneaking fondness for DH, although rather think it's All Got A Bit Silly.
My apologies WW, trying to catch up.
You are not going to be on the Garbage Heap, nooooo sireeeee. I am so pleased that your diet of non-wheat is helping you feel better.
Sounds as if you have a good GP who has a listening ear, if he does'nt tell him you can rev the chainsaw.!!!
Camilla.xx
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