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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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Inky
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Hi there Jane

Sorry you are having this difficult time. I am not a medical person but I really do think you need a second opinion as I was not aware that Lupus was diagnosed by looking at a person. ;)

I look as healthy as anything and am pretty ill with a lupus flare just now. Some lupies have a rash on their face but not all.

There is a disorder known as Hughes Syndrome/ sticky blood (?lupus anticoagulant also?) that a lot of people with (and without) Lupus get that can cause this clotting problem you describe.

Also you can have Negative ANA tests (one of the lupus tests) and, as I understand it, still have lupus. There are a number of criteria for assessing lupus, it does not depend just on blood tests and a face rash.

Main thing, especially given your current chest pain, is to get it discounted or otherwise by an expert, preferably a Lupus expert I think. Is your GP good? Have you discussed all this with him/her? Will he or she send you for a second opinion? My GP did, bless her, but my lupus clinic is in the north of england so not much good to you. (My first Rheumy did not understand lupus at all).

Meanwhile keep an eye on the list, there are some much more experienced people than me on it and also some of them may well know a rheumy in London.

The only other thing I can add is that the people on this list are truly lovely and very very helpful. So welcome.
Love
Sara
 

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Discussion Starter #3
Thank you

Thank you sjink for your kind encouraging words and for just believing in me.I really needed some positive feedback.
 

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Inky
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My pleasure, there are rheumies who just do not or cannot seem to understand lupus symptoms. It took me nearly a year from being sure I had lupus to getting it confirmed and I really had the bit between my teeth (when I wasn't fast asleep which was a lot of the time ha ha). Even then the first rheumy thought I needed to "pull myself together" and that I was imagining the memory problems!!!

Do go back to your doctor as soon as you get the name of a rheumy you want to see. This list will help you keep sane meanwhile.
Sara x
 

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Hi VJane,

Welcome to the forum. I hope you find it a useful source of information and support.

Please take a moment to read through the forum guidelines ( see the top of the page a blue/purple bar with many links in bold type - click on guidelines).

I have a question? Do you know if your PE was caused by APS (also called hughes syndrome)? This might have been what the heamatologist was refering to about the IgM - anticardiolipin antibodies are sometimes of the IgM variety.

All the best,

X C X
 

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Hello and welcome :)

I don't really have anything useful to say other than popping in and saying welcome :)

and don't worry about being eaten alive, I'm one of the only ones that barks a lot around here and the others got in first :rotfl:

I'm sorry to hear you have been so very ill and especially to have had that reaction from a doctor which certainly should not happen :mad:

hugs to you,
:hug:

Katharine
 

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Hello Jane,
You are very welcome and will not get eaten!
I see Dr. D'Cruz in London. I have also seen Prof. Hughes. If all else fails you could get a private appt. with either of these at The London Lupus Centre.
I cannot stress enough that blood tests are only part of the story. I was very sick and on treatment before I ever even showed a positive test.
Don't despair.
x Lola
 

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Hello VJane,
Lupus can be difficult to diagnose because there are so many test involved. If your lupus has attacked your lungs in this instance, the doctors should find out eventually. However, it is sometimes worth asking for a second opinion because it is such a complicated illness. The important thing is to stay positive and focused. That in itself can be self healing at times.

Best Wishes
Kirsten
 

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hi there,

i don't really have any advise for you as i have only just been diagnosed myself and i'm still finding out about it, however, i read your post and i also had a dvt, clot in my leg, i was rushed into hospital once with a suspected pe but thankfully it wasn't that, i can imagine how terrified you must've been. i thought a dvt and suspected pe would've been the worst of it for me but it just seems to be one thing after another... i have also put on a lot of weight since having my dvt due to inactivity and possibly as a direct result of dvt/blood disorder, meds - warfarin (6 months) i don't know why but it sucks! i have just started a blood type diet which if i follow strictly should help me shed the 21+ pounds i've gained. by the way - did you lose any hair on the warfarin? and did you have heparin shots? OWWWCH.

hope you recover quickly and comfortably x
 
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