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Any GPs make sense of my symptoms please?

(11 Posts)
mandmsmummy Thu 13-Feb-14 19:57:14

Brief history...
Diagnosed with ankylosing spondylitis after pain in SI joint and back for two years.

Taking diclofenic 50mg daily after not getting on with naproxen or meloxicam.

Diclofenic great for AS but have palpitations when I'm on them and my appetitie is huge in them!

So symptoms are:
Burning feeling in hip
Niggling pain in upper abdomen like my left rib has something caught in it
Had an ocular migraine (no pain) just visual disturbance

Am led to believe all AS related but am concerned that this is something more as I never feel right. Blood tests all ok apart from one which was under range and apparently nothing to worry about. (Creatinine?)
Abdominal ultrasound scan was ok, was worried about pancreas but it said "where visible seems ok" is that normal to put where visible?

Always seemed to be at the docs and feeling fed up as have so many good things going on I would love to enjoy them properly xx

mandmsmummy Fri 14-Feb-14 15:19:50

Bump x

candycoatedwaterdrops Fri 14-Feb-14 17:14:02

Apart from diclofenac, are you on any other meds?

mandmsmummy Sat 15-Feb-14 10:20:28

Thanks for replying xx

mandmsmummy Sat 15-Feb-14 21:54:21

Anyone? I really am fed up x

SofiaAmes Sat 15-Feb-14 22:07:30

I am not a GP, but it sounds like it could be mitochondrial disease related, in which case, there are some simple treatments like high doses of L-carnitine and CoQ10. My ds was finally diagnosed 18 months ago with mitochondrial disease after having spent the first 11 years of his life with all sorts of weird, apparently unconnected symptoms like chronic fatigue, aches and pains, migraine, abdominal pains and cyclical vomiting. Once he was diagnosed, he was put on the Mito-Cocktail which is a collection of supplements related to the mitochondria. He stopped taking all the awful prescription painkillers and opiates and anti seizure drugs he was taking before and was finally healthy. I have a friend with lupus and rheumatoid arthritis who has had really amazing results with the Mito-cocktail supplements too. It's a very new science and the medical advances are so new that most GP's (and other docs too) know little or nothing about it.
You can read up on mitochondrial disease here and on some of the treatments and help available here.

SofiaAmes Sat 15-Feb-14 22:09:54

omg, just re-read your post. Abnormal creatine levels are a good indicator of mitochondrial issues. Please read the posts above. All the supplements are available over the counter and have virtually no adverse side-effects, so even if you can't find a doctor who is knowledgable about mitochondrial disease, there is a lot you can do to treat yourself. Note that it could take a few weeks to start seeing results.

mandmsmummy Sat 15-Feb-14 23:29:04

Thanks I'll read up. X

SofiaAmes Sun 16-Feb-14 00:12:44

Don't get scared by all the fatal diseases. Mitochondrial Disease is a big umbrella right now used to refer to anything that is a result of issues in your mitochondria. These can vary from things that are fatal in infancy, to what my ds has which is mild (although he has just been upgraded to moderate) and which will affect your lifestyle but won't kill you just yet.

candycoatedwaterdrops Sun 16-Feb-14 09:46:09

mandm Remember that AS is an autoimmune condition, so it can affect other parts of the body i.e. eyes and more uncommonly organs. Speak to your rheum about your other symptoms.

mandmsmummy Sun 16-Feb-14 16:57:05

Thanks candy! Yes it's hard to get my head around x

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