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Discussion Starter · #1 ·
How easy is this? I won't get eaten alive will I?
Could do with some support - I feel it's me against the world especially where doctors are concerning - I've just been left with my symptoms and no relief.
Who on earth can help?

I got sick in Sept 2007 with Pulmonary Embolism - blood clot on the lung and after a series of tests etc. found this was a result of a DVT (Deep vein Thrombosis).
Got sick again in December 2007 and I mentioned that my cousin suffers with Lupus, they checked my first blood tests and found I tested positive to Lupus, my second test in January proved negative and my third in March proved positive again.
The rhumatologist - tells me 'he only has to look at me and can tell I don't have Lupus!'
- wish he could of done this before I waited over 2 hours to be seen!!
I was going to be put on an anti malaria drug - but then told I haven't got Lupus! - more time wasting!
I am not going to be seen again by my haematologist until October - she saw me in January, send me a cryptic letter something about IgM's or something!!??? and left me to deal with my symptoms all alone.
I am on life long warfarin which is being monitored weekly as it is unpredictable and I only take vitamins otherwise.
I have been twice to A&E in the meantime with tightness of my chest almost like having a severe asthma attack and can get any air into my lungs, chest and back pains, lethargic, vision problems - like tunnel vision, blurred vision, balance problems which cause dizziness.
I sometimes get a rash on my scalp - but not always, joint pain which I am self managing with Cod liver oil or glucosamine.
Severe memory problems which makes you over compensate by re-checking everything and makes you appear paranoid, which was very disturbing - but I have found Multi-vitamins with MINERALS help immensely and won't stop taking them.
I have found I have put on weight and am finding it very difficult to lose it, thinking that there is a connection with the thyroid and that KELP might help, can't take kelp 'cos of the Vitamin K!
I feel I have a permanent nose bleed at the back of my nose which I can't get any help with as my hospital don't specialize in LUPUS so know nothing about it!
I thought maybe I was having a reaction to Warfarin as the symptoms seem to suggest that.
What I want to know is - is this the P.E or the DVT or the LUPUS? are these natural reactions? should I be doing something to help myself other than what I am doing? What can I take to help aleviate the pain I get in/across my chest? and help with losing weight.
Sorry if this sounds so much but I am getting depressed about the weight, can't be nearly as active as I used to be, fed up with being made out to be a liar and today I feel that I've been in a fight and been kicked over every part of my body. Please help - Thank you
 
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