[kiaratrak]

That i have lupus? I really dont want to get into trying to diagnose myself but am instead looking into possibilities so that i can help my doctor...

Therefore keen to get your thoughts on this -

During pregnancy my left foot swelled, swelling continues after baby delivery to this day and simply goes up or down - usually with the heat/weather.

Doc does load of blood tests and says all negative with exception of white cells which are lower than should be but not dangerous - so every month they check my white cells and so far no change although going again tomorrow. Doc says may still refer me to Rheumie but not seen her again yet.

Symptoms - aside from the foot, white cells, i have flare ups of itching spots usually around my feet/legs - irritated by heat - but they look more like bites and dont respond to creams like hydrocortisone and antiseptic. I feel weaker than i did before pregnancy. My fingers and toes have always been able to turn white at will with the cold and they colour back up in their own time despite anything i do. My limbs can sometimes feel slow to respond to me, i have days where i keep struggling to think of the words i want to say, i had some depression and anxiety since having baby, i wake up in the morning with sore hands and feet and more recently neck soreness. Its like ive been working physically hard the day before when i haven't. This week i have mouth ulcers - uncommon for me although could be due to headbutt from active baby! I sometimes experience numbness or tingling in my arms and legs. I feel like an old lady! Im getting very moody lately which i think is more to do with feeling down about my symptoms - i dont know whether to revisit the doctor because even though she is lovely i don't want to waste her time. My health visitor mentioned about lupus so i thought i would come and see what it was all about and whether anyone here could help me. If i think of anything else ill add later....

Thanks for listening -- Kiara

 

[Maia]

I think it's worth a look into given that you've had some symptoms similar to lupus and it sounds like they've been lasting a while? You already have one bloodwork indicator with the low white blood cells, do you know if the ANA test has been run or any other autoantibody tests? Another test to do would be the B12 test as that can also often be low and cause a number of your symptoms and is something a GP will often neglect to order.

Good luck - hope you get the referral and some answers soon. I would recommend firmly requesting a rheumy referral at your next GP appt without specifying that you are thinking about lupus - just stress your ongoing symptoms and they seem to you and the visiting nurse to be possibly autoimmune related.

 

[kiaratrak]

Im not sure of all the tests they ran only that some were to test for signs of arthritis. I know i had the B12 test during pregnancy and it was fine then. I had another full blood count yesterday and the nurse noticed ive had a few blood tests and said she imagined the doctor would see me again soon if there had been no change.

Part of me is torn between too frightened to go back and wondering if im just being silly and theres nothing really wrong with me. The other half of me thinks i owe it to my little girl to find out whats going on with my health.

To be honest i don't think i have lupus - there don't seem to be enough solid signs. But this seemed like a good place to talk as you all seem very supportive of eachother. Im sure the doctor has got it all under control i just need to be patient.

 

[Clare.T]

Welcome to the forum Kiara

You owe it to your little girl and to yourself to do your best to find out what's causing the current problems. Clearly something is amiss. Having a friendly concerned doctor is very fortunate so take full advantage of it. You don't want to be looking back in a few years time bitterly regretting that you didn't pursue this because you didn't want " to waste the doctor's time ".
Read through the criteria lists both the ACR and the St Thomas's so called Alternative Criteria to see if there's anything there that corresponds to your own past or present health experiences, and make a note of close blood relatives' chronic health problems. Read through the articles here about symptoms, diagnosis and testing. That way you can get to grips with the testing and make sure everything is being done. The GP's tests can be very significant - others are more specialised and usually done by the rheumy.

Of your list the white fingers sound as if they could be Raynaud's phenomenum, the mouth ulcers - you say they are uncommon so you mean you have had them before? - the soreness and the tinglings and thinking problems. Don't try to explain things away there might be a simple explanation but that is as much diagnosing as deciding you do have a disease. The thing is that lupus can take so many forms but it is is important to remember that the people who are living very well with their lupus well under control do not usually post on forums because they have no problems.

Please keep in touch and let us know how you get along. There's a vast wealth of information and understanding here so we'll help you all we can to start feeling better

Bye for now
Clare

 

[LolaLola]

Dear Kiara,
AS well as Lupus rash occurring on the face it can appear very nastily on the lower legs. i had it very badly on feet and legs when my children were babies. I did not even realise it was a lupus symptom until I saw photos on a very respected Hospital website some years ago.
I am sure you realise pregnancy can trigger lupus. You are very welcome here whether you get diagnosed or not.
x lola

 

[kiaratrak]

Hi Lola - i didnt know pregnancy could trigger lupus no...... i dont know whether my rash is lupus like or not - i think it looks more like insect bites that just go very red and itch - on my feet for instance they just suddenly start burning and i have to scratch and then it bleeds and i get left with a horrible scar most of them are still there - i guess my skirt wearing days are over!

 

[kiaratrak]

Thanks Clare - ive read the articles but couldn't really understand/relate to them enough to decide whether they are relevant to me or not....

 

[kiaratrak]

Hi folks :worried:

Quick update. White cells still low so doctor is consulting with a blood specialist and i have made an appointment to see her (GP) Monday now. Found out that so far i have had tests for rheumatoid factor, inflammation and serem c reactive protein as well as full blood counts. Doctor i spoke to earlier has said that in a way the white cell count being low was a bit of a surprise result that they weren't initially looking for. Feeling quite cack today But you are all lovely - thanks for making me feel welcome

 

[KarolH]

Hi Kiara and welcome to the board.

I think the blood specialist along with a Rheumatologist will get to the bottom of this and hopefully you will have answers soon.

Let us know how you make out.....and again, welcome.:wink2:

 

[kiaratrak]

Well appointment today - ive made a list of my symptoms to take with me and have promised myself i won't play down how im really feeling when i see the doctor. Especially seeing as i felt so awful on Saturday morning - im fairly certain there will be no answers today though - its always a waiting game isnt it..... Thanks again ill keep you all posted.

 

[KarolH]

Good luck and remember to keep us posted.:wink2:

 

[kiaratrak]

Ok so as i thought doctor is waiting to hear back from Haematology. From what i can gather my white cell count has been slowly falling over the past few months and is currently 3.1. Which i understand isnt that low - phew! More blood tests on Wednesday and then doc assures me a Rhem referral is likely to follow whatever the result. Lucky to have such a good doctor!

 

[lin]

I wish you luck and as Clare said you owe it to yourself and you little one to get to the bottom of this, something is going on

was lovely to chat to you also today with jane ,thanks for that Linxxx

 

[kiaratrak]

Thanks

Another update - going to be speaking to gp on Thursday morning by which time she hopes all my bloods will be in and hopefully the haematologist will have replied as well. I told her about my worsening pains that seem to come and go for no apparent reason - im also having what feels like stomach cramps this week but not for loo reasons, they are wearing me down a bit too. Doctor says she is still thinking rheumatology referral at which point i asked desparately how long that would take - she says in can take a long time in Lincolnshire but that if im prepared to travel to say Notts then she can get me in quicker.... Just got to be patient i know but its hard when things are going downhill and no one seems to be able to tell me why or help me. Im feeling very frightened and anxious right now but all of your kind words are getting me through - Thank you for that.....

 

[Viridian]

Just wanted to say good luck and persevere! You are very lucky to be listened by your gp, and if needs be maybe you should go to Notts if it'll be quicker. Rheumies around my way are few and far between, even a ct scan app took 3 1/2 months to come through, so in my opinion, you shouldn't hang around if you dont have to. You are in pain now, and they should be able to help you. It can be such a difficult time at the mo so take all the support (online and off) that you can.
Hope things go a bit easier on you.

 

[greenhaggis]

Kiara,

Just though i'd let you know that as a patient you have the ultimate choice of which Rhuematologist you see (your GP should have a leaflet to help you through the process).

Get you GP to give you the names of the ones at both Notts and Lincolnshire hospitals. Once you have those you can investigaste which ones have specialist interests and what they are. Not all Rhuemitologist will be any good at dealing complex auto-immune diseases.

Once you have done your research tell your GP who you have choosen and the they can do the referral.

Take care

Lesley

 

[kiaratrak]

Thanks Lesley - thats great - thats definitely the sort of info you need to have before your appointment and therefore one of the reasons i love being part of this site!

Much appreciated!

 

[kiaratrak]

Apparently the bloods are back and my doctor has written that the levels are normal which included ANA - will be interesting to see where we go from here as there's definitely something not right. Im talking to her tomorrow so will keep you posted.

 

[Zoi]

Hi Kiara,

Best of luck with your doctor's appointment tomorrow!

Hope you get to the bottom of this soon,

:flowery:

Zoi

 

[kiaratrak]

Ok latest news - seeing Rheumie at beginning of November. Still awaiting Haematologists response and my anticoagulant results. Got to speak to my Uni to see what the position is if i need to defer until September will let you all know what they say. Doctor says that my blood work and symptoms could be two separate things and i may need two separate referrals - the quest for an answer continues.....