MrsMum

Hi - MrsMum here again. At last I "have something" - http://dinet.ipbhost.com/style_emoticons/d...lt/rolleyes.gif http://dinet.ipbhost.com/style_emoticons/d...lt/rolleyes.gif yipee. I saw the ENT guy today and my barium swallow showed oesophogeal dysmotility and oesophogel reflux - and guess what, it seems that this is connected with coeliac disease and dysautonomia. http://dinet.ipbhost.com/style_emoticons/default/ohmy.gif http://dinet.ipbhost.com/style_emoticons/default/ohmy.gif Having mentioned to him that I need regular Movicol for my bowels, he is referring me on to Gastro-entrology (or however you spell it). I know you know the feeling - finally something has been proven, and I feel better for knowing it isn't all imaginery. Perhaps there is light at the end of this tunnel? Regards, MrsMum

MrsMum again What I did forget to mention was that since changing my diet, I no longer feel have beads of clammy sweat all over my face and body, and no longer fell hot all the time - in fact I have actually voluntarily turned on the heating (I usually battle with my husband who says it is cold when I feel hot) and worn a coat for the first time in 6 years (and that includes 6 winters!) I can't help wondering if the two things are connected? Anyone else experienced the same things, please? MrsMum

Hi MrsMum here Sorry I don't post very often, but as I'm still struggling with a diagnosis wasn't sure if I am welcome, but thought I'd post on this thread as it seem relevant to me. I stopped eating diary products about 3 or 4 weeks ago, and some things seem to have improved - I don't snore as much, I am not so grouchy, and I don't have so much pain in my belly. I ought to have done this ages ago as I had problems with diary as a child but thought that being pregnant 3 times had cured it. Following this, I also tried cutting back on gluten (not completely being fanatical without a coeliac test). The thing I noticed first was my extremely bloated abdomen felt less bloated - and people noticed that my tummy was "going down". I also stopped feeling like I was severely constipated, and the fleeing of a "blockage" in the bowel disappeared, too. Having read that you need a normal diet for at least 6 weeks before any investigations, I re-started the gluten foods, and guewss what? My tummy swelled again, and the pains in the balls of my hands, feet (and even the pains in my buttocks) all came back. Sadly, as you will all understand, having been through so many "false starts" over the last few years, I couldn't be 100% sure that it really is the gluten and not a co-incidental "good" phase. Bearing this in mind I did 2 things: 1: did a home blood test 2: approached my GP for referral. The outcomes were 1: the blood test was negative - but I have had antiphospholipid anticardiolipin tests come back negative on 3 occasions, before finally getting 2 positives and a diagnosis. This makes me wonder, especially when you read that it is quite possible to negative blood and positive biopsy or vice versa. 2: my GP is adamant that the only reliable test for coeliac disease is to stop eating gluten and see what happens. I KNOW I need the biopsy, but I also know that she is not going to refer me a s I have had a barrage of tests over the last 5 years, and they have all come back negative (so how come I feel so crap?) I am re-trying cutting out gluten, and will then try to find someone who will take me seriously - if I am right I should be referred to a nutrition specialist, and would also be entitled to have some of the more expensive coeliac foods on prescription. But the main reason for wanting a diagnosis, is to prove to everyone who doubts how ill I feel that it's not all in my head znd at least some of the symptoms have a "real" origin. I'm sure you all understand that feeling! Sorry for going on so long. Best wishes MrsMum

How about: ... when your 3 year old carries the 2.5kg bag of potatoes in from the car because she knows "it's too heavy for you, mummy" ... when your 8 year old checks that you are ok in the bath ... when your 10 year old makes you cups of tea because he knows that you can't lift a kettle, and is worried you'll get scolded ... when you stop moaning about it not being the weather to hang washing out because you can't hold your arms up long enough to hang washing anyway ... when you tell visitors that the kids are studying spiders webs for a school project because you have so many and are too ill to remove them ... dust on the skirting board becomes a fashion feature as you dare not try to get down to wash it off ... a good day for housework means you changed the toilet roll ... when you can just about change a pillowcase but forget the duvet cover ... you go for a family scooter ride - the kids are superman scooters, yours is a mobility scooter ... you decide it's a good day and walk rather than scooter, and old ladies with one stick get there quicker than you can with 2 ... you manage one bite of bread without aspirating and spending 20 minutes coughing to dislodge it ... you are gradually reverting to a pureed or liquid diet because of the increasing swallowing problems ... renowned specialists spend time explaining that "neurological symptoms often have a psychological origin" because whatever (you "imagine"!) you have does not show up on their tests ... when you need to write a letter about your benefits and get as far as "Dear Sir" before feeling exhausted ... when your GP wouldn't dare tell you it's psychological because she knows your husband used to be a psychiatric nurse ... when you can't get DLA because nothing shows on any tests could go on for ages, but you know the feeling............ MrsMum

Thanks to you for your kind welcome. I am having increasing problems with eating - food goes "down the wrong way" and I spend about 15-20 minutes trying to cough it out of my lungs. I mentioned this to the last neurologist who I saw, who assures me this is psychosomatic - but this is not something anyone would do "for attention", is it? My GP is quite concerned because this was happening once a week or so, but it's now daily, sometime 2 or 3 times. I have a list of foods I can no longer eat: cornflakes, bead with seeds, biscuits, mince (unless it is covered in sauce), crisps. I find it increasingly hard to swallow even soft moist food. One doctor assures me this is a part of my antiphospholipid syndrome (APS), even t hough it is not mentioned on the APS symptoms list. Having one unusual diagnosis means it is hard to be taken seriously, having 2 means it is impossible to get anyone to look past those conditions. I am worried that by the time anyone finds out what I have it will be too late. This is hard enough to accept, but when you have 3 young children................. MrsMum

Hi everyone I've read lots of your stories while waiting for my "clearance" to join you all, and so much of it seems sadly familiar. Here, in very brief, is my history: I am a patient who has spent years feeling increasingly lousy but being told it is due to ME which I was diagnosed with 25 years ago, and have been symptom free of for 18 years. I have all the symptoms of MS but have had 2 MRI's for MS which were clear, leading the consultant to lecture me for 1/2 hr that "neurological symptoms often have a psychological origin!". I also have have antiphospholipid syndrome, which again has blurred the issue. I stumbled on autonomic nervous system disorder while trying to find constructive information on how to move forward and where to be referred to, to take to my GP after the poor experience with the neurologist. ANS dysfunction seems like being the answer - ie symptoms of MS but nothing ever shows on MRI scans. All I need now is to find out who is the best doctor to see in the UK (South East area), and hope that this time I get an answer.... Looking forward to enjoying the understanding that only felllow sufferers have! MrsMum