Bad day!: So... just had another... - Pernicious Anaemi...

Pernicious Anaemia Society

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Bad day!

Catlover3
Catlover3

So... just had another appointment with a different gp from our practice and my daughter is in tears. Her latest ultrasound on her lymph nodes is apparently normal as are all her blood tests. Having been refused an appointment with a rheumatologist we asked what now? The gp asked if my daughter was working or at college...she hasn't been to school since she was 14 and at that stage was hospitalised with depression. She is unable to function on a day to day basis as her exhaustion wipes her out completely even though she will have slept well the night before. We get sick and tired of repeating the same things over and over again and not being listened to. With her life the way it is, it would be a miracle if she wasn't fed up and down but it isn't the whole reason why she is exhausted, losing her hair, bruises easily, poor concentration, sensitive to touch, poor temperature control, Reynauds syndrome, etc etc...And just to make this week even more stressful we have the joy of a DWP assessment this week too! I wish this would all go away.

5 Replies

I’m really sorry to hear about your daughter’s problems . I can only suggest that you try to get an appointment with Dr Sarah Myhill , who is really the expert on such conditions ( M.E.etc) You could try reading one of her books “ Chronic Fatigue Syndrome and Myalgic Encephalitis “ . I believe it is difficult to get a consultation with her -she is overloaded with work .She lives up on the Welsh Borders, near Knighton . You won’t be surprised that the conventional medical community don’t like her, but I should think that she takes that as a compliment . She worked as a GP for many years but didn’t like how the NHS operated . But for a start , do read that book .She has a website with many good tips . Very best wishes .

Catlover3
Catlover3 in reply to wedgewood

Thanks for your reply. As far as I am aware she isn't taking on any new patients but I will read her book. I am struggling at the moment with everything but I'm sure this phase will pass and I will feel more able to fight for my daughter.

wedgewood
wedgewood in reply to Catlover3

I really feel for you . You will find the book enlightening . It will give you hope .

Hi, My daughter has been through a similar situation to yours, hers started at the age of 11 and we were in and out of hospital with no diagnosis. I felt we were being treated as though we were both imagining it. On the days I managed to get my daughter to school within 20 mins of being home she would fall asleep and stay that way till morning. She also suffered with depression and anxiety and IBS. She eventually was diagnosed with ME/CFS. We followed the guidelines with sleep etc but still she struggled massively. When she was 14 she also started to struggle with stomach pains and GI issues eventually leading on to her vomiting every day. She had Head MRI scans and all sorts of other tests but all came back ok. One day totally at the end of my tether I suggested to her paediatrician I was going to eliminate dairy and gluten from her diet. He told me to try one at a time and make sure I was extremely careful about checking the ingredients as milk is in the bizarrest of things (even some boiled sweets, gravy etc) . We did this and she showed signs of improvement within a few days then gradually got better and better over a period of 6 months. I now have my happy daughter back. She still struggles with tiredness if she goes out and parties too much but no where near like she was before and now has a 100% attendance rate at college on her 1st term. I’m not saying dairy is your daughters issue but don’t stop looking outside the box for a reason for your daughter being so poorly. If the body is not coping with something then it is going to act up. I’m just sad it took so long for us to figure out what her problem was and the years she lost. I really hope you find the cause of your daughters illness.

Thanks for your reply. My daughter has been dairy free since she was little. As a baby she was breastfed but continually brought up milk inbetween feeds until she eventually inflamed her oesophagus. She also used to have white poo which was undigested fat so had to be put on soya unfortunately. I was told she would outgrow this but of course she never has. She is now gluten free too as she does suffer with abdominal pain after eating anything with gluten although she's never been tested for coeliac disease. I think she has absorption problems as has had so many vitamin deficiencies despite eating a good diet but its just trial and error to find if anything helps. I am so pleased that your daughter has made a good recovery and is enjoying life as she should. Best wishes Catlover3

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