Newbie Here!!... Lupus (SLE) Diagnosis in 2015

[Chlsbug]

Joining the Lupus group here in hopes to either find solutions and discussions pertaining to medical issues I am experiencing, have experienced, and/or help people with questions about treatments I've tried which have either help/worked well and can possibly be able to give some guidance and share advice or diagnosis in which my doctors have determined as the underlying cause which are Lupus related... Thank you all for sharing your posts throughout your own personal struggles and stories as we all go through this journey together!!

[whisperit]

Hello and welcome, Chlsbug!

[Tinky52 in reply to whisperit]

Whisperit, can you please help me also, I'm so confused. Please read my note from Chlsbug. Thank you!

[Tinky52]

Chlsbug, I've been diagnosed with Lupus Sle about 12 years ago but I also have Fibromyalgia, no rashes except a few times, but the headaches and the pain in my joints, thighs, hands, my NEW Rhuemy feels that it's more Fibro than Lupus, even though my number for Lupus is at 1.640. I'm tired from morning till night and no energy. Could he be correct since I've never really had any organ issues? Please help. Tinky52

[whisperit in reply to Tinky52]

Hi Tinky52,

I've only been diagnosed since April this year. I've had no skin problems, but a lot of lung inflammation, joint pain and Raynaud's. In the last few months, my consultant letters have been variously headed "Undifferentiated Auto-Immune Disorder". "Overlap Syndrome", "Mixed Connective Tissue Disease/Sjogren's Syndrome" and "Interstitial Lung Disease"! So when I saw my respirology consultant this morning, I asked him about what diagnosis I should say I had. He told me that although I had strongly positive ANA blood results, the mixture of symptoms I had didn't quite fit in it with any one diagnostic label in particular. Also, they seem to be changing quite quickly.

So I am definitely no expert on guessing what label you might qualify under! I guess the important thing is to feel confident that your consultant has the whole picture and that s/he is doing their best to treat you correctly?

Hope your new rheumy is able to reassure you of that.

[Tinky52 in reply to whisperit]

Hi Whisperit, thank you for sharing. Since I've moved quite abit, I've had 4 Rhuemy Dr's whom actually just dealt with my Lupus. I have had problems with my gallbladder which was taken out, then my bowels which I was referred to a gastro Dr. are treating me for IBS. I get Kidney infections and stones but not sure if Any of these problems are associated with Lupus. My throat is constantly sore with sores in my mouth off and on. My pain is throughout my body. I've been given different pain medications for my headaches through my GP Dr. But Never from my Rhuemy Dr's which I never knew why. I am on Plaquenil but I don't know for what.. Do you have any of these symptoms as well ? I'm hoping when I see this new Rhuemy for 2nd time he will have answers. I always feel they think I'm crazy or a hypochondriac!! Please reply, thank you!

[whisperit in reply to Tinky52]

Blimey, Tinky52,

Sounds like you have had a lot of pretty difficult experiences. Although your problems seem very different to mine, I know that these auto-immune disorders seem to include all kinds of things, and every system of the body. I sometimes have the same feeling that I come across as a crazy person when I am asking about all these different symptoms.

I'm sure you are right to take all your questions to your new rheumy. Just make sure you don't leave until s/he's answered them all! Good luck.

[Freckle1000 in reply to Tinky52]

Hi Tinky,

Your'e not a hypochondriac, You have Lupus.

Digestive issues are a possible and very much underestimated indicator of a possible flare and should be considered as such. (I lost my gall bladder along the way too ! - bloody imbeceles) So are sores in the mouth, pain, fatigue and headaches. 'Anything' effecting the kidneys should always be closely monitored if you have SLE. I had a

Rhematologist with a fibromyalgia "you are anxious" fixation and ended up in a hell of a lot of medical trouble.

Please find a good Lupus specialist, or a Rheumatologist who will not waste your time and health confusing genuine Lupus issues with concepts and ideas related to Fibromyalgia. This has proved dangerous not only for me but many Lupus sufferers !

I had to spend a lot of time and effort eliminating 'Fibromyalgia' from my medical record as I found I repeatedly couldn't get help with Lupus flares and was instead treated as a hysteric. Now its off my file and I've changed all my Doctors I'm now treated with respect and get timely treatment.

To be honest, I had to suppress a lot of rage when I read you posts thinking - not again. "NOT AGAIN" When is this going to stop.

For me I'd never use a Rheumatolgist as a specialist again as Fibro seems to be their favorite hobby at the moment and it doesn't belong anywhere near a Lupus sufferer as it muddies the water.

x.

[shareasmile in reply to Freckle1000]

I so agree with you Freckle! I, too, had to fight the fibromyalgia diagnosis. I was so enraged by it that I went for a 2nd opinion and have now found a Rheumatologist(#2) that is very thorough, sensitive and inquisitive. I was able to get Rheumy #1 to remove it from my record and I will never go see him again. I now am in the middle of diagnoses also. I was seronegative RA, but with a new ANA of 1:640 with speckled and homogenous patterns combined with multiple signs and symptoms, she now thinks it is either Lupus or MCTD or synthetase (anti-synthetase?) syndrome. #2 will cost me more, but being in good hands is so worth it!

[Freckle1000 in reply to shareasmile]

I'm so glad you found a good second Rheumy and you're getting closer to a diagnosis ! I hope things go smoothly for you from now on. Sounds like it will. It is worth the money to be treated with a bit of respect.

To be honest, I'm still a bit shell shocked, and dumbstruck at what happened to me with the Fibromyalgia label.

Unfortunately I was much slower on the uptake than you. (story of my life)

I had established SLE Lupus, with a history of Lupus Nephritis when I was labeled with it fibro - and all of a sudden, when I got a flair I couldn't get help.

(I'm actually now trying to find out now whether I became sero - negative over this period ?)

My - I can only say ? 'deluded and fixated' but unfortunately very senior (Associate Professor) ex Rheumatologist would write to my GPs every time I became ill saying it was only anxiety/fibro. He seemed to believe he had magical powers as I live more than 350km away from this specialist.

Also strange how you become anxious when seriously ill and unable to access medical care. Ironically, I've since been told anxiety can be an actual symptom of a Lupus flare. Not just a reaction to it.

I ended up having to GP hop because of this and was then promptly labeled by Doctors as 'Neurotic' for trying to save myself. Not one Doctor repeated what was said in the Rheumy letters (or the "little chats" over the phone from this overly admired lazy monster) As a result this horrific dynamic continued for many years.

Needless to say I became very ill and a gibbering mess..... which led to me being sent to a psychiatrist who quickly had the decency to show me examples of the Rheumatologists letters and told me to find a new Doctor - psychological problem instantly solved at least.

Trouble was I had lost half my renal function (much improved now with proper specialist care) incurred some peripheral nerve damage - leading to a balance disorder - and with my flares starting with digestive problems (thought to be fibro/IBS) the digestive system has also taken an SLE beating.

All this over what is essentially a universally unsubstantiated concept invented by Rheumatologists. From my rage induced research about this stuff I'm pretty sure there's a big whack of sexism involved.

Like many others with the fibro label I got the "You are going to be weak and overly sensitive to pain for the rest of your life.....just accept it" line........a pretty insidious - hope destroying thing to say.

Anyway, many apologies......this has turned into a proper rant - but I know others on this site have accumulated some disability from this exact same scenario.

Still feel like screaming.

I find the hardest thing now is when my new GP or new Specialist scratches his head and asks how did this happen - I can only say - it was probably a series of communication break downs etc.

I'm under the care of a Nephrologist/Generalist Specialist at the moment and he's doing an extremely good and thorough job. He's very good at spotting random internal organ problems quickly so for my particular form of SLE (not much in the way of arthritis) he's excellent.

xox

[shareasmile in reply to Freckle1000]

Freckle, your story is a tragic example of what happens when doctors don't listen and don't want to make the effort to get to the bottom of our health mysteries. I am so sorry and angry that this has happened to you. A friend of mine is a medical coder. She says that she can tell by the doctor's coding if he/she is just going through the motions to get paid or if he/she sincerely wants to find an answer to our afflictions. I'm glad you are on the right track now. I hope you continue to get the care you deserve.

[Freckle1000 in reply to shareasmile]

Thanks : )

Yep. Met way too many doc's just going through the motions. Not the best examples of humanity to have to deal with that's for sure.

BUT - sounds like your'e in the right hands now too. I hope you get a clearer answer soon as to what's going on with your health. Seems like your very close.

Well done for surviving the battle you had to go through.

X

[sarahsch]

Hi Chlsbug,

Welcome to this site. I have found it very useful over the last year or so. You will find everyone here is very supportive & many have a good deal of knowledge.

Sarah x

[happy222]

Great to meet you. I am newly on the site as well. I have SLE and was only diagnosed 8 months ago. But so many different things I am going through is also so new to understand. So will be great to see what has helped you, as well as what you have been going through and coped with.

[LucyK5821]

Hi there! You look so happy! Welcome aboard! I'm a newbie as well and love the support I have already gotten on my journey for answers.

[Hidden]

Hi there,

Welcome to the forum! I hope you find it useful.

I you are looking for additional information and support, you might also be interested to know that we have various support groups across the country and there might be one in your local area where you could find additional support and chat with people who have been through similar experiences. You can find out about a local group on our website here lupusuk.org.uk/regional-gro...

Our website also has a lot information about lupus and you can request an information pack here lupusuk.org.uk/request-info... as well as have a look at various other leaflets we provide about the condition lupusuk.org.uk/publications/

[shareasmile]

Chlsbug,

Welcome to this most helpful forum! Your picture is adorable!