Please read and help if you can. I am desperate

General
1

Ok, so I don't know where to start.

I have 3 children, am 34 and happily married.

Our youngest is 7 mths and it all kind of started when I was pregnant with him.

At 14 weeks pregnant I had Swine Flu, at 17 weeks pregnant I had Influenza A at 20 weeks pregnant I was hospitalized with Pluerisy and Pnuemonia and then they found I had Pericarditis which needed treatment with high doses of steriods. Long story short I had pnuemonia the whole of my pregnancy which they couldn't shift and had Labyrnthitis along with other bits that kept me in hospital until delivered by emergency c sect at 35 weeks because I had gone into labour because he was transverse and was in distress. They tried to turn him for an hour than his heart stopped so they delivered. He went to NICU on a ventilator and chest drains and after he got better we came home.

Then over the next 3 weeks my bones were getting more and more painful. In the middle of the night 4 weeks after he was born I started being very sick, had a fever of over 40 and felt like every bone in my body had been broken. I ended up in hospital with severe pnuemonia and it had turned into sceptacemia. I nearly died but made it through and left hospital. Then 1 week after that my older 2 children, 7 and 4 were sent home from school with blinding headaches, very high fever and flu like symptoms. We took them to Drs who thought it was a virus. Then baby came down with it. We rushed him to hospital. Long story short they had had viral menengitis. Baby came home after a week or so and we settled into life. Then call came from Obstertrician (sp?) saying one of my bloods had come back positive and it was for Lupus. She told me I had to see my Dr asap. I was referred to Rheumatologist and Lupus explained everything that had been happening during and post pregnancy but also going back years. My hair falls out periodically, I have fluid retention, chronic acute fatigue, chronic acute pain, the Dr thinks the lining of my internal organs is gritty as I get pains around them and no-one can explain the pain. I have Fibro myalgia with 18/18. I also have recurrent infections from small ones, constant ingrown toe nail infection even though it's not in grown to big ones like pnuemonia. I get skin flare ups though not the typical lupus butterfly on my face. I do get the classic butterfly on my chest and rashes on my lower arms which are red and risen with teeny tiny white bumps. I have IBS and Depression and Brain Fog. I get terrible forgetfulness which drives me mad. A more that I can't remember right now. (Ha, only reading back did that look funny)

The Dr gave me a diagnosis of Fibro Myalgia and provisional of Lupus and took a ton of blood to test for various things. We were expecting it to come back positive as everything fits but I got a letter from Dr which says ANA has come back negative ''so it is unlikely to be a diagnosis of Lupus''.

I have no idea of what to think and I feel the rug has been pulled out from under my feet. I felt we had a diagnosis and now we don't.

Lupus explains all of my symptoms and without the lupus diagnosis I am up the creek without a paddle.

Please, please has anyone else experienced anything like this?

Can I still have Lupus?? Can you get Neg ANA when you are in remission or can you get negatives for a while and then get a positive? Also is there such a thing as Neg ANA LUPUS?

I am totally confused and scared and I don't know what else.

Please answer and help me if you can.

I really appreciate you taking the time to read this - please leave a message.

Liz

2

Hello Liz,

Sorry to hear everything you've gone through and so glad your child survived after birth...your body was going through a chronic flare while carrying your child, that's why issues like mad kept arising one after the other and your one lucky woman so your a strong fighter...there's loads of member's who's Lupus showed up after carrying a child.

You may have fibro which relates to alot of joint and muscle pain but the rest of your symptoms are to strong not to be Lupus and with your face you sound like you may have "Roascea"
You need to be sent to a Derm who will check you besides running tests as there's so many skin conditions involved.

Regarding the specialist go for a second opinion as some rheumo's can be so stubborn it's unbelieveable and they know that ANA bloods done for Lupus can come back negative, as lupus fluctuates our bloods in other words can give off false readings and with some Rheumo they leave it at that and don't persist furthur plus if you show 4 signs out of the 11 criteria for Lupus you should still be treated but this is the same, some won't and persist you have'nt got it.

We have members on here like yourself where bloods have been normal and kept going, then sme out the blue have showed positive.

So from my point of view with your symptoms and what you've suffered otherwise but for a 2nd opinion with a Rheumo and go for seeing a Dermo regarding your skin trouble.

Hugs & kisses Terri xxx

3

Thanks Terri,

I don't have the butterfly rash on face but I do get a butterfly rash on chest and a rash on forearms.

It's not bothersome, it doesn't itch or anything....it's just there and a little swollen/raised

The Drs I'm seeing are at The British National Hospital for Rhuematic Diseases so I can't ask for a second opinion. These guys are the best of the best of the best in the whole of the UK.

Liz x

4

Hi Liz,

My youngest sister as Lupus besides me and suffers with Roascea and her face is always pure red besides her neck leading into the v pigmention marking for Lupus.

I had the butterfly rash years back and mine did show bad it looked like my face had been burnt..i did'nt get the itching but it was sore at times and never knew it was the butterfly rash or even lupus then.

I know you can't ask for more with those your seeing but if a Dermo is'nt treating you just Rheumo specialist...they seem to deal more with joints/sle regarding Lupus that's why i suggested it.

I'm treated underneath newcross hospital if you know it, wolverhampton but i've always had a great dermo, my rheumo was rubbish but my dermo soon sent me to another rheumo who is great in the field of work and i've fianlly found a great eye specialist because of my sjogren's.

Terri :) xxx

5

That's great you've got good Drs on board.

Thanks Terri,

Liz x

6

Thanks Liz,

I've waited 5yrs for a good rheumo and eye specialist.

You takecare Terri xxx

7

Hey there Liz, extremely glanu n baby n children are here to tell us this story. Ana test can def come back neg. I don’t know why, mine came back for 2 years neg or borderline, but my anti DNA kept comIng back post. I have mutliple symptoms not classic butterfly, but roscea also. Don’t let anyone tell you, u need to advocate for yourself. I have also been to many docs affiliated in Philadelphia, one thought it was just arthritis, I kept plugging away, as my joints felt as if I was 100 years old. I also try to eat anti inflammatory foods, and spices and supplements that help with imflammatories, also gluten/wheat free. Helped, but when a real flare hit, I knew it was more n I has to take action. I currently just went back in plaquenil, and take pain meds often, but this week has not as often and it was AStress filled week! You have more symptoms than I, please keep plugging away to find the doc that will actually help u! Best wishes and prayers r with u!

8

Thank you Sue for taking time to reply. I have only just got your message otherwise would have replied sooner. Hope you feel better soon.

Ellie xx



Sue said:

Hey there Liz, extremely glanu n baby n children are here to tell us this story. Ana test can def come back neg. I don't know why, mine came back for 2 years neg or borderline, but my anti DNA kept comIng back post. I have mutliple symptoms not classic butterfly, but roscea also. Don't let anyone tell you, u need to advocate for yourself. I have also been to many docs affiliated in Philadelphia, one thought it was just arthritis, I kept plugging away, as my joints felt as if I was 100 years old. I also try to eat anti inflammatory foods, and spices and supplements that help with imflammatories, also gluten/wheat free. Helped, but when a real flare hit, I knew it was more n I has to take action. I currently just went back in plaquenil, and take pain meds often, but this week has not as often and it was AStress filled week! You have more symptoms than I, please keep plugging away to find the doc that will actually help u! Best wishes and prayers r with u!
9

Hello Liz,

How are you now in yourself since adding your discussion?...please update we when you can on how you are.

Thinking of you Terri :)

10

Hi,

I hope that you a feeling a little bit better since you posted. Yes, ANA neg Lupus is possible although rare to always test - for it. Your story sounds a little like mine. I am a RN and I was confused as hell when I kept getting ill and almost died. I worked trauma surgery/ER. I thought most of my problems were due to the high stress, boy I was wrong.

I got valley fever, went to a pulm dr whom I worked with. I just wasn't recovering from it. He actually looked at my sx and htx for the past 20 years and referred me to my rhumy. I first had a -ANA. My CRP and SED were extremely high. Also, my RA factor was -, my vit d level was critial low. Had to take weekly vit d for 6 weeks. then we ran new tests, still -ANA, -RA. However, I continued to have all the s/sx of Lupus. Long story short, this went on for 9 months. At which point my ANA finally increased to a somewhat positive level. I started treatments. I test negative and positive all the time now. My RA however now tests positive every time, my CRP and SED always high. DNA Double comes back with RA with Lupus features. My rhumy has really no answers and he is a Mayo Clinic trained and is double board certified in rhum/immun. He writes books and so on. It is what it is. However, my father had agent orange posioning from the Vet war. He thinks my DNA is messed up from that.

He truly believes that I have Lupus, RA and Fibro (nerve conduction studies + as well.)

I really got educated about the lab tests and their meanings and on Lupus and RA. I had my liver bx and my heart checked out. Baseline data is always good. I have fired Dr's that did not understand Lupus or listen to what my sx are. I have really become a bitch- I laugh, because I was always so trusting of Dr's. I feel now that I have more knowledge than some Dr's :-)

So I know your feeling crazy, I was there. Your not. Take a deep breath and laugh. Find a Dr that your 6th sense tells you this is the one and believes you. Anything is always possible--- we don't know your DNA and your families history. Both are so important when dealing with these dx's. Any medical event can start a chain of events (such as childbirth) that lead to so many other problems. That is why it is called the Art of Medicine. No 2 people are the same.

Sending prayers of good health your way. Bernadine

11

Thank you so much for your reply. i don't understand the nature of the tests that you are talking about apart from the ANA test. I am seeing my Dr again after 3 mths and I really don't think he believes me or that it is Lupus as he wrote to my Dr saying that a negative result was very reassuring and therefore Lupus was highly unlikely.

I don't like my Dr but in the UK we can't change Consultants to get 2nd opinions and The Private Health Care doesn't deal with Lupus/FM/Thyroid Problems etc as it is not cost effective. They deal mostly with cancers.

I am very worried that after what has felt an eternity to see him again he will send me away saying FM diagnosis stands and that that is that. It isn't that. I just know it!!

Please if you can......Please can you tell me some tests to ask about (he took 12 vials of blood) and whether them being high or low indicates Lupus.

I'll check in the morning before I leave to see if you have answered.

Thanks so much Bernadine

Hope to talk to you in the morning.

Ellie x

12

Hello,

Ugh that sounds so flustrating- some Dr's believe in black and white approach :-(

SED rate- has to be high

CRP has to be high

ANA appx only 1 % of Lupus patients will always test neg

RA-Rheumatoid arthritis= +

12 vials of Blood? My guess would be that he is running a lot of rule out labs. That is normal.

Lyme disease, white blood & red blood cell analysis (that is 3 vials alone), cardiac markers, do they do a double strand DNA? and probably some rare cancers and others.

Make sure that you get a copy of all those labs he ran. Then use google or go the www.NIH.gov (National Institutes of Health), Mayo Clinic or a trusted site in the UK to reasearch anything that come up high or low. Knownledge is power.

Hang in there! Feel free to ask us on LWL and/or me.

13

Hello Ellie,

Well Bernadine's helped you out regarding the tests you need running regarding Lupus but regarding not liking your doctor...Ellie you only have to see your GP and you'll get refered to another specialist as your paying for it and reagrding the NHS also we're all entitled to 2nd opinions...as i'm from the UK like yourself.

If you type in google (Does private health care specialists deal with lupus in the uk)...it shows different area's with private healthcare who treat Lupus and they're not all mainly cancer specialist's there's loads who deal in their own field of work, it's actually who's refered you to this specialist in the first place.

Love Terri xxx

14

Terri, My GP is not sympathetic at all. She would not even refer me to the Rheumy Drs. She refused for cost reasons and told me ''There is nothing more I can do for you Mrs H.......''.

I then got panicy and went private to the Spire Hospital in Bristol and pain £500 for appoint and 2 blood tests for Thyroid and Vit D.

In the end I went back to my Obs and even though she wasn't really allowed to see me because I was 4 mths post partum she did and she was the one that wrote to my GP telling her as a Lead Consultant to a GP to refer me.

I can't see her again as I'm now 8 mths post partum and DEF out of her care and my GP is awful.

I'm scared.

There are no good Drs where I live, everyone is always complaining about them. I live in a village and can't go further afield as I have no transport as husband takes car to work and with 3 young children and me unable to walk more than 50 yrd or be able to afford a taxi, we really need a Dr we can get to within an hour if needed.

I don't know where to go, what to do or where to turn for help.

15

Hello Ellie,

You do need to get copies of your blood work toknow where you stand you can apply for these from the hospital, it's so much a copy plus it helps you to know what really is going on.

By your situation and also living in a villiage like you've stated options can be limited and i really do feel for you, where i'm just outside town more into the country but there's loads of doctor's in the area but thankfully i managed to get back with my old GP.

Ellie if you don't want to ask the citizens advice burea about this, then get intouch with the OMBUDSMAN who cover all aspects regarding the public and don't mess about with issues...all i can say it's worth trying and seeing where you stand...here's all their details plus email address.

Health Service Ombudsman for England
13th Floor
Millbank Tower
LONDON
SW1P 4QP

Telephone: 0845 015 4033

Website: www.ombudsman.org.uk

Ellie i'm not trying to push you.... so please don't take it in that way, i know your in a terrible situation where sometimes we are limited but all i'm trying to do otherwise is OPEN DOORS where you may get the sound advice you need because like i stated these people work for the public not the goverment and their rules :)