[Mrs M]

Hi everyone! not right sure what to say? I've just got off the phone to the doc and he said that the 15 plus blood tests I had 5 weeks ago are negative for lupus. Last week he said that some tests were back and that it couldn't say yes or no to lupus. I'm so confused and fed up of feeling poorly.

I've not been so good now for over a year. Extremely tired, achy, headaches, stiffness in my hands, sweeling in my knees and 4 months ago appeared sores on my fingers and toe that the rheumy said looked like chillblains? Theses have got no better and now after last weeks great sunshine my eye is swollen and sore and antibiotoics have not worked. I've also just got black spots appearing on my toe nails!

Sorry for going on a bit. It just feels good to get things off my chest.

 

[cath]

Hi Mrs M,

Welcome to the forum:hello:. I'm sorry you are ill and as yet without answers. You are not alone. That scenario is very common in the early stages of many chronic illnesses, and something most of us here have been through or are going through.

It is good that you have a rheumy who is at least listening and running tests. At least that way if or when something conclusive shows up, you are in the right hands. It is also a safeguard for you, any organ involvement should get picked up sooner rather than later.

Are you on any medications? At the very least, a NSAID should be prescribled to help with joint pain. If the doctor is seriously considering a connective tisssue disease, sometimes they will start plaquenil before making a diagnosis.

Keep reading up on lupus and its cousins (UCTD, MCTD, sjogrens, RA etc), so you know what symptoms to let your doctor know about. It is also sensible to take precautions like avoiding sun exposure, resting as much as posssible and avoiding herbal remidies aimed at boosting the immune system.

Hang in there, and feel free to vent all you want.

X C X

 

[Mrs M]

Hi there Cath, thanks for your advice. I had a shoulder injury at work in Jan this year and because of the swelling was given diclofenac(NSAID) a month later is when my fingers and toe broke out so was told it could be due to that. They got worse even after stopping taken them but the rheumy isn't sure if they may have played a part in things!

I've only seen the rheumy once ( 5 weeks ago) and he said that it looks like I've got early signs of SLE or it could be CTD or vasculitis! This is all new to me and very confusing as tests have not revealed anything and I would love answers on why I have felt rotten for ages. In the last year as well as my symptoms listed I also lost 2 stone in weight which was scary. I would love to feel like my old self - full of beans and heaps of energy to be able to run round after my 7 year old daughter. I'm coming up to 30 but feel so much older! Visiting the rheumy in 3 weeks and not sure what will happen next. GP on the phone said the rheumy will have to look at other possibilities for me feeling ill?

Thanks for listening.

 

[Katharine]

Hello Mrs M and :welcome:

I can't add much to what Cath has said but just wanted to welcome you here and say "hang in there" :hug:

Most of us have been down a really hard diagnosis road. These diseases are so complex and infinitely infuriating at times as they all share some symptoms and are all difficult to diagnose.

Katharine

 

[Maia]

You may want to get copies of the bloodwork that was run recently. To learn what was tested, and if anything was found at all. Some rheumy's will not dx lupus without positive dsDNA or Smith antibodies, even though these are in no way required for a lupus diagnosis. Then you'll have a copy for your records if you decide a second opinion is necessary at some point down the road as well.

Hopefully this rheumy will continue to see you and offer symptomatic treatment in the meantime. Definitely don't give up! There are many paths to diagnosis, and some are quite long and winding unfortunately.

 

[LolaLola]

Hello, I hope you get some progress soon. It can take time and I expect you have already learned here that blood results do not always co operate especially early on.
X Lola

 

[Mrs M]

Thankyou all for your advice and support. I will try and get a copy of my blood results which I guess I'd not thought of so thanks for the tip!
I'm with the rheumy in a couple of weeks so I will let you know on what happens.
I'll try to keep smiling

 

[elisabethm]

:welcome:MRS.M some of us on the site have had a positive test the first time round then the next time we go back to the rhumy they are not sure.It is so frustrating but hope you get the answers that you are looking for at your next visit Elisabeth

 

[pennylp]

Hi and a Big welcome to the site,

You have come to the right place... Sometimes just talking to others that are going through the same thing as you can help you emotionally... To know you are not alone...
There are so many that are waiting to find out what is the cause of their pain and ailments...
It took many years for me to be diagnosed with lupus , but my doctor gave me things for my symptoms,even though I still wasn't feeling great, I felt better than having nothing at all... You should ask the doctor if he can give you something to help with your symptoms.... At least that will help you somewhat, as it did me...
I wish you the best of luck , and again welcome to the site people here are allways available to give support to one another... we have all been where you are at one time or another...

Love Penny

 

[Mrs M]

Thankyou ladies!
I am going to ask the doc if he could give me something for the symptoms. At christmas which I love was a complete washout...a few days before I came down with what I put down to flu and felt so terrible. I didn't get out of bed for 8 days and felt terrible just turning over in bed. I couldn't eat and was absolutely on fire with the temperature. The doc was interested to ear this as he said it may not have been flu but just another symptom? From then I've felt not right and also started with CTD or vasculitis so the doc said although once again can't be diagnosed. My fingers and toe are really quite sore red stiff and can get extremely cold and then suddenly swell and get hot to touch. I think I've had enough of putting up with this and yes I'm definitely going to ask the doc for something now. When the doc initially saw my fingers and toe back in Feb this year he said that he wanted to prescribe steroids but was reluctant as it could mask my symptoms before I saw the Rheumy? I hope now even without a diagnosis he prescribes something just to give me some release. Thanks for listening and lets keep smiling::wink2:

 

[Clare.T]

Welcome Mrs M!
I'd like to suggest you take photos of the 'chilblains', swelling, dark marks other colour changes and any other visible abnormalities.

There's a lot going on there that is highly suggestive of some sort of connective tissue/'collagen vascular' disease. Look through the Criteria lists at the top of not yet diagnosed to see what you can relate to and also chewck out the information part of the site the sections about symptoms diagnosis and blood tests. You'll be able to see when you get your blood tests copies if all the usual ones have been done.


You should also have a complete health history ready, with nothing left out because everything can be relevant to these diseases and we should expect be thoroughly questioned about our health history - it's impossible to remember everything at the consultation. Take a notebook and make brief notes of what's said then when the consult draws to an end go over them with the doctor - note any medicines that are mentioned too.

Good Luck
Clare

 

[Mrs M]

Hi Claire.T Thanks for leaving a msg.
I took photographs of my fingers and toe back in Feb on Gps advice ready to show rheumy incase it had cleared up but he actually saw them as they still haven't cleared up yet and are really quite painfull! I've been to see GP this morning as I'm really not feeling too good and everything seems to be building up. Almost two weeks ago I got a swollen eye after been in the garden watching my daughter play ( yes 18 months ago I'd have been joining in!!!!). I was put on antibiotics and eye cream which asn't worked. The GP this morning said that he's not going to give me anything else for it although he did have a look and said that it was red and sore but didn't know why? Could this be a symptom?
I asked the GP if I could have something at least to help with my fingers and toes because 4 months on and they're refusing to clear up! He said that when I see rheumy in 2 weeks he may give me steroids:worried: to help them but still they need to get to a diagnosis. Can I also ask if anybody suffers with backache especially at night and leg ache? I just cant get a good nights sleep with them along with getting hot and sweaty(too much info maybe).
Thanks All xxxxx

 

[Maia]

I do suffer from pretty bad low back pain at times for weeks or months. No known reason. It's essentially located right on the sacrum (the biggest bone in the center of the bum really!) and extends out uniformly around that point. My legs will ache especially in the evening hours when I'm flaring badly as well. So yes, I definitely share in those symptoms.

I bet your appointment can't come soon enough!

The eye thing sounds quite uncomfortable. I had something similar once but it was quickly/easily diagnosed as cellulitis (skin infection of skin around my eye). I went to bed feeling quite normal and woke up the next morning not able to open my eye even half way as the upper lid had swollen so much & was red and sore. I had to take oral antibiotics to clear that up. As I recall, they diagnosed that easily especially as I also had "staph spots" on my nose.

Good luck - let us know how it goes!