[alexbelfast]

hi all well as most of u know i live in northern ireland and i went over to the london lupus clinic to see Dr Kaul and he diagnosed me wiht mild lupus
and started me on 200mg of plaq a day
so today i got an appointment here with a dr aubery bell
he was very nice but did not agree with the diagnoses
he feels i have a post viral problem and that it could last for many years
so now i am left confused again
he said keep taking the plaq as i have only been on it about 8 weeks and to come back and see him again in a few month and see if i feel any better
most of the bloods test are normal but i have a raised ana of 80 so not that much
i also have heaps of the symptoms incuuding a bit of a rash which has got better with the meds i think
he also recomended onacor fish iols 1gram a day as they have completed research saying it has benefit effects on lupus patients and it wont do me any harm even if i dont have it
so her i am again thinking and feeling like i am not well but this dr saying virus
so will stick to the meds and take the vitamins and the fish oils and see if that works
i said to him i was normaly healthy person with a pretty good diet who does not smoke and only drinks about 3-6u units of alcohol a week
and now i am a person who is in constant pain who feels like i have the flu and hangover symptoms all the time wqith joint pain mouth unlser swollen hands very sore chest pain when i breath and had a c.y scan which showed up inlarged lymph nodes and also sickness and swollen glands the list goes on
he just said ok see u in 3 months
alex

 

[greenhaggis]

Hi Alex,

Sorry this visit went so badly!

Never heard of a post viral illness that can last for years - is that for real!!

Just googled and low and behold ME came up: www.surgerydoor.co.uk/medical_conditions/Indices/P/post_viral_fatigue.htm


Also www.en.wikipedia.org/wiki/Post-viral_fatigue_syndrome

Good luck with the research!

Hugs!

Lesley

 

[lazylegs]

Hi Alex,

Whenever I hear of this happening I get mad. Why can't these locals doctors take the word of the specialists that work with Lupus all the time?

Fortunately you are already on Plaquenil. It is possible that if it kicks in this doctor will be convinced something auto immune is going on. Meanwhile the suggestions he gave will not hurt you.

You could contact Dr. Kaul by letter to see if the good doctor would contact your local one. It is possible that Dr. Kaul could convince him that it is indeed Lupus. There might have been something subtle he noticed that your local doctor missed.

Take care,
Lazylegs

 

[alexbelfast]

thanks for the replays
he said i post viral illness can last for years but yet again i never heared it lasting so long
if this vas viral i think it should stay at the same level not keep going up and down anyway
but u know what i dont believe him
and he did not even examin me i have new symptoms of really sore face and even sorer feet which have been killin me for about 3 weeks
he did not even look
going to stick with the meds for now ans see what happens
feels like i am on a roundabout again
willkeep fingers crossed
thanks
alex

 

[alexbelfast]

oh dr kept going on and on about h.i.v tests
but i was already tested and was negative had to tell him this 3 times before he listened to me

 

[KarolH]

Hey girl,

Sorry that your confused by all of this......i would be too. And it is frustrating to boot.

Let us know how you make out moving forward.

I take Fish oil and a multi vitamin too and it can't hurt.

Hope you get feeling better soon.

I am going to go check out the link Greenhaggis sent to you.

 

[Katharine]

Hi there!

I have to say that I certainly wouldn't waste time worrying about what he has said. However, I would very much want to be sure that his ramblings will not affect your treatment.

As Lazylegs said, the man from London IS the specialist and specialists are thin on the ground.

As for the virus theory. How many times will we have to have that trawled up again and again by stubborn whatever doctors who, for some inexplicable reason can't take the top guy's opinion into account? I really can't get why they can't work together!!! Anyway, if I start off on that one...

Katharine

 

[KarolH]

OK, I read the links and in my humble opinion this does not sound like what you have based on what you have said in the past.

Curious what you think Alex???

 

[alexbelfast]

List of symptoms since July 2007
this is the list of symptoms i have taken with me to london and also here
mmost of my bloods are clear
my ANA is 1.80
iron levels are sometimes low
white cell count is sometimes low
one other thing has been up and down also
anymore advice i would really appreciate
when i started geeing sick i losv almost 2 stone in weight
i have now put that back on and another stone



1. Feel like have a hangover and flu all the time
2. Heart rate going up frequently to 160-180 - can last from 3 minutes to an hour and a half
3. Heart flutters all the time
4. Headache most of the time sometimes with sharp pains
5. Very sore and stiff neck
6. Sore throat and swollen tonsils
7. Swollen glands in my neck
8. Exhaustion -not the normal tiredness
9. Sore left shoulder and arm feels weak
10. Nerve pain in arms
11. Pain in chest all the time and under left arm swollen chest muscle
12. Pain in left lung and gets worse when breathing
13. Wrists and thumb joints sore
14. Nausea or being sick
15. Mouth ulcers
16. Swollen tongue sometimes
17. Pins and needles in hand, feet and tongue
18. Low B.P 100/60
19. Dizzy and feeling faint
20. very sore feet
21. Sore face

 

[KarolH]

Alex,

Have you ever been tested for APS? (Antiphospholipid Syndrome) Do you have any of your blood test results that you keep in your file at home?

 

[greenhaggis]

Alex,

I would seek out a Rhuemy or Immunologist that really does specialise in Lupus for your local care. Also get the St Thoms specialist to write a letter to you GP and any one to any specialist you are attending.

Take care,

Lesley

 

[alexbelfast]

dont think i have been tested for that
what is it

 

[alexbelfast]

thanks lesley i think i will do that

karol the dr over in london works with dr hughes and he suggested that i get tested for it
but my iron level is low ans they said it has to be really high for it to be that
but no one will test for it so far
its mad
alex

 

[KarolH]

Alex,

I am confused.....your saying that you have to have high iron to have APS???

NOT TRUE.....Google APS or Hughes syndrome or sticky blood and read about it. Let me know how many of the symptoms you have. I think you will be shocked at what you will find.

Some Antibodies for APS:

Lupus Anticoagulant, Anticardiolipin antibodies, B2 Glycoprotein, Antiphosphatidylserine, Antiphosphatidylethanolamine, PT and PTT........these are some to look for in your blood test reports.

Do you see any that you have been tested for? So many of your symptoms I get too and I have APS along with Lupus. My face and tongue are numb a lot.

If you have not had these tests done then I would ask them to be done. I think Lesley is right in that you need a LUPUS SPECIALIST to treat with.

Also, the tests for APS have to be done 2 times at least 6 weeks apart. Curious, have you ever had a blood clotting event in your lifetime?

Sorry, I am full of questions. I will shut up now and wait for you to reply.:wink2:

 

[alexbelfast]

keep the questions ccomming i need the help at this moment
i think u are right all my symptoms i have posted on this site can point to that
the dr i saw yesterday did say i had to have really high iron to have aps
but now i know it is not true
i have made an appointment so see my g.p and i am going to take the bloods you have mentioned with me and tell her to test for those things
i had what they think was a stroke about 6 years ago
but the c.t scan i had ans mri showed clear
so who knows but i am going to push to be tested for this
also i am not going to see any more quacks here and i am going to stick with the london lupus clinic so i am going to ask my g.p to make a referral on the n.h.s to see if i can see dr.kaul that way
will keep u posted and thanks so much for the info
alex

 

[KarolH]

Good for you Alex. Your moving in the right direction. So, I can only assume you have NEVER been tested for these antibodies, right?

Also, was your MRI done with dye/contrast? I ask because my MRI with out dye is relatively normal yet with dye it shows the damage.

Just some food for thought. If you did not have dye then maybe you can request a MRI with dye this time around.