[donna kosk]

so fed up with loopy lupus been told in january i av sle after 10years of problem and no 1 believing me im 36 years old and feel like 90 my consultant is a bit mad my nurse is useless no surport at all ere in wigan, england i dont know where else to go to talk to some1 that understands :sad::sad:

 

[keebler]

Hi Donna,

You have come to the right place, you won't feel alone here. We all understand what you are going threw.

You had a long road to getting diagnosed. :hug: Many here have gone threw that long journey.

This site is full of information about lupus. Members here are very helpful and caring.

Do you go to a rheumatologist that knows lupus? What meds are you on?

I know that feeling when your body feels like it is 90.

It is nice to meet you.
Take care,
Lyn

 

[x_claire_x]

Hi Donna, sounds like you don't trust your Rheumy too much and not getting much medical support... can you look for a different one, it is soooo important to your care and for you psychologically to bond a bit with your 'team' of carers to get the best care and confidence that they are working hard for you. I have MCTD and know the old lady body thing!...this is a good site for people to get advice and support, there is alot of knowledge and understanding on this forum, so glad you found your way here at least. You sound so fed up, hope you can find a decent Rheumy in your area that has a good knowledge of Auto Immune conditions,, that would be such a good positive step forward..... anyway, until the next time look after that old body
Claire X

 

[Clare.T]

Welcome to the forum Donna!

You have found a place where everybody understands and perhaps we can help you find better doctors. Certainly there's lots of information here that will help you get the best out of the system for yourself. Information is power

We have quite a few members in the Manchester area assuming memory serves me right and Wigan isn't that far away. If you post in the Find a Doctor section for rheumies in the Manchester area or the north west you might get some names. Actually I think there have been some posts but not recently.
I am wondering how lupus affects you and what meds you have been put on as well as what in general makes you think your rheumy is mad ! You will need to make out a very good case if you wish to be referred out of your PCT area
Just let us know how we can help you - the time after diagnosis when
you're trying to get the right medicines and coming to terms with things, is often very difficult even when getting the diagnosis has come as a relief.

Talk again soon

Clare

 

[dixy]

Hi Donna
Happens know how U feel I felt and looked like 110 year old woman or zombie.
Try and get a second opinion I go to Addenbrooks an C Dr Frances Hall. theres a special Planned short stay unit there at Cambridge and all the nurses and Doctors are so kind and understanding. As its a teaching hospital I think they are more open to different ideas well thats my thoughts. Poor u far too many years 2 b fobbed off . Ive been dx 3 years but the first 10 months felt like 10 years. Hope you get sorted soon. Take care. Gentle hug

Dixy

 

[elisabethm]

:welcomeonna you have came to the best site there is allways someone that will give you some good advice and it is also a great place to let of some steam.The Chat Room is the Same Hope you feel better soon Elisabeth

 

[donna kosk]

thanks for that i av sle and im only on steroids was on some other tablets but got really bad side effects ended up at A.E. ive also got rynards nd ostio.My simtoms r the rash on mi face nd neck pain in mi joints warts in mi head nd on mi body but every week gettin more cramps r so bad at times ive been close to cryin

 

[donna kosk]

i dont really trust mi rheumy and more so not mi nurse she is a waste of time wen i got a reason y i was always ill i cryed thinkin YES now i can b treated but its worst then ever at times i still think im goin mad nd doctor still not listenin im no better now then b4 i got mi lable same things still bein sed mi own gp still thinks its not sle but every1 else does ive also got rynards nd ostio to and im just on steroids its a bad thing to av wen u know nothing about it mi rheumy thinks i cud av it in mi head to as i suffer really bad migrain attacks to thee point that ive lost the use of all 1 side of mi body medics thought id ad a stroke but it was,nt thanks for replyin to me

 

[Maia]

I wish I had some answers for you... best thing for you to do is try to get into another rheumy for a second opinion. Search through the find a doctor forum or post there yourself and see if you can find some recommended doctors nearby. I know some people have ended up going private to get started with a diagnosis or the right treatment.

I would also like to request that you not use quite so much text speak. It's difficult for myself and others to read and can cause a bit of a headache in those of us that are not fluent in text speak! Thanks in advance.

 

[x_claire_x]

Hi Donna, do you know what auto immune antibodies you were tested for and what the results were??
Claire X

 

[Pink Pearl]

Hi Donna,
Migraine headaches can be part of cns [central nervous system/brain] lupus. For this you need to be seen by a neurologist. There are also other things which can go with those, so best to get a referral to a neurologist, especially one who has experience in working with lupus.
Just having a specialty does not mean that doctor is versed in dealing with the specific branch of rheumatic disease which you have. There are about 100 rheumatic diseases for that one speciality.

I would definitely suggest you seek a second opinion if this rheumatologist and staff are not working well for you. I fired 3 rheumatologists before I finally found the one I have been with for 16 years now. So, do NOT hesitate to seek out another or even another visit. Had I stuck with the first rheumatologist, I was told I would only have 5 years to live, and that was 20 years ago!
Sally

 

[donna kosk]

im just waitin again for my next app in june dont no wot my results were i,ll just see wot my consultant says wen i see him then thanks for your reply

 

[flamenco2]

message for Donna !

Hi Donna,

Just read your message. Sorry to hear you up in the air with not seeming to have anyone in your area, surely there must be someone ?

I see you in Wigan (just down the East Lancs from me). Im bout 15/20 mins in car from wigan area (now Haigh Hall Park) LOL.

Im in a quandry at moment with my Lupus issues, and off sick still from my full-time job in an office.

If you ever want message/chat to me, feel free.

Im under a hospital near me.

Regards, Diane X

 

[donna kosk]

thanks for replyin but dont really no wot to say 2day is bad for me cant kick start mi self

 

[onetay]

Donna,
You have found a place to talk about it and that will understand what you are going through also. Welcome to the site and hope to see you the chat room soon. I hope that you start feeling well soon.

 

[donna kosk]

ello all wont b on today in alot of pain chat soon

 

[LolaLola]

Dear Donna,
Sorry to hear you are so poorly.
You really do need a good Consultant and a good GP. Many of us, perhaps even most of us, have had to say Goodbye to Docs. who just weren't up to caring for us well enough.

Hope you feel a bit better by the time you read this.
x lola

 

[donna kosk]

thanks lola so many problems im goin to see mi GP on monday i need sumthing to sort this out mi face was drooping yesturday stoke sign but its not a stroke but really fed up

 

[lazylegs]

Good luck with your appointment on Monday. I suggest taking a picture of your face so the doctor can see the drooping just in case it is back to normal by then. Drooping can be a sign of stroke but it is found in a few other instances as well. It definitely needs to be investigated.

Take care,
Lazylegs

 

[donna kosk]

hello all just been to my GP and has uped my steroids to 15 mg and priscibed naproxen 250mg 3times aday could any1 give views on this tablet pls he also thinks that my liver has got some inflamation thanks