Hi I wonder whether you could help me please? My husband has been unwell for a number of years now and has no firm diagnosis of what is wrong although I understand our GP is now testing him for lupus. His symptons are: tinnitus, reynauds (worse in his feet but has it in his hands as well), weakness in his arms and legs, joint pain but no swelling, weight loss, thinning of his hair, mouth ulcers, receding gums, constant aura around his right eye area which also droops occasionally and seizures - with regard to the seizures he had a grand mal in 1999 and since then no-one will look beyond the small seizures he has now and take them into account with all other things. He is taking high dose of Vit B daily and the seizures are now more infrequent than they were when he was on anti seizure drugs. He also suffers from gastro problems too and complains that nothing tastes right whatever he eats/drinks. Also has neuropathy in his hands and is quite depressed.
Any assistance is greatly appreciated. Thank you. Nina
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Wolf52
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If his tests for Lupus come back negative don't give up it may be more of a mixed connective tissue disease rather that one specific. I have secondary raynaud's and have it in my hands feet ears, lips and nose the abnormal capillary loops are so bad that they can be seen without the need for a microscope. I also have muscle weakness all over my hair went very thin and I had to have it cropped off. I also get visual problems with lots of flashing flickering lights and eyelids don't operate together I think it's called lid lag!! I take domperidone for the gastric problems this helps with the awful reflux, joint pain with no swelling in my case it is not my joints but the connective tissue I get a lot of bursitis and tendonitis very painful. Apart from his seizures and drooping eye and depression, I have all of your husbands symptoms and more. I presume he is also very tired and everything is an effort? The weight loss I had was huge I lost 7and a half stone in less than 6 months which at the time was half my body weight.
Forgot to say for the raynaud's have a look at the raynauds and scleroderma association website raynauds.org.uk/ there is a connection with raynauds and gastro problems.
Tracy, thanks for your replies. Yes you presume right, he has really bad fatigue and sleeps very badly as well. His weight loss has been slow, but its definitely there. Nina
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