View Full Version : hello new member
02-06-2009, 12:20 PM
Hi I am a 41 year old with a few autoimmune problems,I have vitiligo,lichen planus,underactive thyroid and in the past have had nerve problems and lung problems!
I have just come back from the doctors and have been told I tested positive for ANA antinuclear bodies,I asked for the results and she said 1 in 40?
There was also a pattern in primary biliuary cirosis?
And I have a chest infection!
She has requested more blood tests next week.
So now I know why I have felt cr*p all week !The doctor mentioned SLE and will refer me to a Frances Hall at Addenbrookes, I live in Lincolnshire.I was given co-codomal and 14 day supply of antibiotics, I must admit I had a few tears in there too.
Does this mean I have SLE? or will the rhemutologist diagnose me?
I feel like many others, I have been struggling with this for years but have always thought its in my head. I self certified this week and was given a week sick certificate, I couldnt face work this week and feel slightly better for being in the warm.(my job involves being outside).
Thanks for having such an informative friendly site.Hope to speak with you all soon.
02-06-2009, 02:23 PM
Hello Sharron :D
And welcome to the forum, wow why on earth would they be sending you to Addenbrookes when you live in lincolnshire?? thats a right old distance to travel! i know cause ive been to both places :)
Im sorry to hear you have been feelin crap all week, hopefully your bloods should make some sence to you soon, im on the co's too for pain but they aint the strongest of painkillers, Your rhuemy will diagnose you if you have SLE, remember tho you are not alone, and anything you want to chat about or rant or rave feel welcome in doing it here, thats what we are here for to make you feel happy,
Take care and speak to you real soon
02-06-2009, 02:28 PM
Hey there, im also from the UK (manchester though). Im not sure about the level of antibodies, but it is one thing they look at when considering lupus. Have you had many other sypmtons?
If you have a look round on here you'll see the common ones, usually it takes a while for a Dr to diagnose SLE as i think they have to see how you are over time, it took my rheumy 2 years and he thought i had various other illnesses.
I shed a tear or twenty when I was diagnosed, but I'm coming to terms with it and I found as long as you manage it as best as possible you minimise its impacts, its hard if you have a flare up, but when im not flaring i feel perfectly fine :) So even if you do get diagnosed, it can be a relief to explain your illness and its easier to cope with, so every cloud :)
Hope i helped a bit, and hope things get sorted for you.
Also, I have co-codamol but I dont find it very effective most the time, do you find similar?
02-06-2009, 02:37 PM
Welcome Sharon :!: Glad you found the site it's a wonderful and friendly site with lots of sympathetic ears and knowledgable folks.
02-07-2009, 05:40 AM
And welcome to the forum, wow why on earth would they be sending you to Addenbrookes when you live in lincolnshire?? thats a right old distance to travel! i know cause ive been to both places.
Yes seems along way to go hopefully it will be worth it, do you not think Addenbrookes is any good? Hubby says its about 60 miles,hope the appointment doesnt come through to early like 9am !!!
Might be a couple of months yet tho depending on waiting times, I have been mostly taking ibroprufen 2x 600 mg twice a day and they seem to help it all seems in my back and shoulders mainly on the left side that hurts the most,but i have been to a lung specialist a couple of years ago and he diagonosed bronchecitus (sp?) so not sure really,so mostly my symptons are tiredness, aching,headaches joints hurt in hands and this week my skin is really flaky and dry on my cheeks and forehead.
I could be in a flare up ?
thanks for you replies.
02-07-2009, 05:59 AM
yes sounds like a flare up, but the dr can tell you more, :)
Oh yes i rate adenbrookes highly ive had so much dealings with that place for me and my family, its a teaching hospital and has a uni onsite and the biggest food hall i have ever seen without going to the states, its like a mall!! :D
That is prob the best place for you to go to, i just think its quite a distance, it takes me about an hour to get there from herts :? yeah sharron lets really hope you havnt got a time like that to start with lol you will be traveling from the crack of dawn lol,
I look forward to hearing from you soon and that of your appointment too,
take care for now
02-07-2009, 07:03 AM
Oh and forgot to say my most annoying sympton is forgetting things and poor memory!! Brain fog, grrr!! So frustrating!
I am pleased you think Addenbrookes is good and look forward to going,on a first appointment what would you expect to happen?
02-07-2009, 07:28 AM
On your first appointment he/she will take a breif history of all your symptoms you have had through out the years, feel free at this point just ramble, oh and if your having brain fogs id advise you to start writing a list, then you can resite them back to him/her when you go see them, try not to leave anything out they will need to know everything even if its small to you it may be big to them, (i kno i made that mistake severall times) they will prob send you for some bloods, my first visit was so to the point i forgot to breath!! any questions also you want to know write these down too :D oh and remember they are there to work alongside you and your body,
hope all goes well!
02-07-2009, 07:45 AM
Sorry one more questin have you seen this lady Frances Hall? thanks for the info,
02-07-2009, 08:30 AM
No i havnt, is she a rhuemy?
02-08-2009, 02:41 AM
yes she is a rheumy,my gp said to get an appointment with her.I looked on the website and she works on clinic 5.
02-08-2009, 05:31 AM
You have to go about getting your own appointment with her?
02-08-2009, 06:38 AM
No sorry didnt make myself very clear!
The gp is referring me, but I looked it up on the website to see about parking etc.
02-08-2009, 06:43 AM
Ah i see, parking aint too bad up there, its soooo huge so you will need a map lol :D
02-08-2009, 07:05 AM
There is a lupus center in London and if this is a possibility for you it may speed up a diagnosis for you.
do a search for the london lupus centre and it should come up. Very informative website as well.
I have taken some time to do research some and it seems that a good deal of information is coming out of the UK and I am wondering if they treat it different there and have better success.....
02-08-2009, 08:28 AM
I was thinking the same thing at one point, its on london bridge, it is also private, and i dont have that kind of money unfortunatly :(
It weird i stumbled accross the lupus centre on london bridge when i had gone all night raving with my friend, then 2 months later im get diagnosed with it lol
02-08-2009, 09:56 AM
I forget that healthcare in the UK is different than here in the US. I would LOVE to pick Dr. Hughes brain for like 10 minutes! I think I may try emailing him.
Hope things improve for you.
02-08-2009, 12:12 PM
Oh they have ten times over ive got one of the best Rhuemy's in this country thankfully :) i did send them ans email once, i dint find them very helpful they sent me a link to LUPUSUK, where you have to pay to join! ah well cant expect everything i guess, i will take a trip up there one more day and sit there and have a chat with the secretary lol tea and a biscuit :D
anyway peace for now
02-08-2009, 10:41 PM
Just wanted to say Hello and Welcome to the site. :D Glad you decided to join us. There's always someone to offer an ear to listen when you're needing it. Lots of great, supportive people here.
I hope all goes well with your upcoming appointment. Be sure to let us know.....