[pollianna]

Hi everyone, my second thread here. Got my official diagnosis today which is weird. Dr D'Cruz told me that I have a lupus type illness but it didn't mean that I don't have Lupus. The good news is that my organs are not involved....The problem seems to be how it won't fit into the discoid etc types. My skin is beautiful tho my hair falls out in clumps and with no organ involvment there's the joints and the spine, brain left? He gave me to a registrar and then spoke to me for a few minutes but it wasn't the same as seeing just him :worried:

I got my antimalarials and have started on 200's for the first few weeks. Took one 30 mins ago and feel nausiated already so it's not looking good but I took a couple of days holiday to get used to them.....and recover from the journey up to London...Some poor devil commited suicide on the track and the one hr journey took 3 but puts it all kind of into perspective...Poor devil :sad:

I got a copy of my blood test and the first ana was weak positive, speckled but the last one was negative. It's all so confusing although my Rheumatoid factor was sky high the first time and is still positive. Could anyone help me to interperate some of the numbers that are flagged up on the test and tell me what they are? would be so grateful, feel a bit lost

 

[Katharine]

Hi Pollianna,

I know that you may feel as if your appointment is a bit of a let down right now but it is actually very rare to walk in and be given a "lupus diagnosis" straight off. For that to happen one would usually need the kind of sudden, extremely serious onset that puts people in hospital.

Right now you have someone taking your concerns seriously and who has admitted that you have something auto-immune going on. Insurance-wise it is actually better NOT to have a lupus diagnosis. The main thing, and you mustn't lose sight of this, is that you are now being treated and taking exactly the same meds as you would if you had had the word "lupus" attached to you officially.

Dr D'Cruz is right at the top of his field and if he feels that he can't give you an official lupus diagnosis then there is a good reason for that. No-one can analyse the history, symptoms and bloods better than someone of his experience.

Often, it will take time, sometimes years to determine which auto-immune disease is actually the primary thing affecting you but what's important is to be treated and to limit any further damage by taking the right meds.

When you take your plaquenil, you may well feel a little nauseus or suffer from extra "wind" for the first few weeks. It is important to take your meds WITH food. Unless you have extreme symptoms which would indicate an actual intolerance, it is worth sticking with it and you should see those slight side effects disappear as your body gets used to the med.

Plaqeunil will take a good while to reach it's full effect (often between 3-6 months) but I saw a big improvement in my dry skin, photosensitivity and hair much quicker. It is an excellent baseline med which should control the disease better, reducing the frequency and severity of any flares you might have.

Are you going for a follow-up appointment and, if so, when?

Hugs :hug:
Katharine

 

[pollianna]

Hi Katharine, thanks for the prompt reply. I know you are right and I know the treatment is more important than the diagnosis. I guess I was hoping that after over a decade there would be black and white clarity but lupus isn't like that is it? I forgot .

I am so relieved that someone believes me. My rheumatoid factor in August was 116 it's gone down now but still positive I think my little body saw the needle and screamed help me .....find the Rf!!! lol

I'm probably back in 6 weeks, takes me 3 to recover from the journey. Hope your well katharine xxP

 

[Katharine]

Don't worry Pollianna, give yourself some time, be kind to yourself and try and live one day at a time

Katharine

 

[Maia]

Have they ruled out rheumatoid arthritis then via x-rays? If x-rays have not been taken recently of some of your affected joints, then you may want to ask about this. We have had a member in the past who missed a RA diagnosis and damage ensued on her hand joints that is irreversible.

That's my only other thought - I also think your appointment went pretty well and am glad you've commenced some treatment for your lupus like condition - whatever it is! Plaquenil is used for a variety of autoimmune conditions including UCTD, SLE, RA and more so you're definitely covered.

 

[pollianna]

Hi Maia, yep had x rays on the hands and feet, look normal. They both did a complete exam and a neurological exam today. I was shocked at how high the RF was but it's gone down to 57 in Jan. I did wonder about RA.......

I guess I shall realise in the next few days how lucky I am. I don't mean to sound ungrateful, been up since 6, someone threw themselves onto the track, guess it's just been a rough day.....

am so grateful for this site and you guys. xx

 

[LolaLola]

Pollianna,
What a day you have had. So sorry to hear about the Rail suicide, hate to think of anyone being that desperate.

It would seem to me that you are getting what would have been the first choice of treatment whether the diagnosis is Lupus or Lupus like illness, so you are pretty much where you need to be at the moment.

I hope you don't feel your symptoms are being made light of, sometimes even the best Docs. need a little time for things to become clearer.

Blood tests are not always an indicator of how well you are. I was worse Lupus wise before my bloods became positive, so please don't feel you are "not really ill".

Hope this makes sense I am trying to type and watch the puppy so he doesn't eat anything he shouldn't. Hairbrushes, make up brushes, pens, shoes, they are all fair game to him.
X Lola

 

[pollianna]

Hi Lola, yeah I guess I felt a bit less than after sitting there for 3 hrs and being given to his assistant with a lupus like diagnosis. I feel so vulnerable when I'm ill and desperate for some validation with this illness.

The weirdest thing was when I was "well" the RF was sky high and felt worse when it was lower, very weird!!

I don't now what I would have done without this site

 

[marymackay]

Diagnosis

Hi Pollianna
glad you were able to get to Dr Cruz, and received the d/x of lupus like symptoms. You received such good messages from our moderators.

I have been on the Boards over 2 years, and have found them so helpful, as I am on the northeast coast of Australia, with no specialists or GPs who know Lupus or APS in my city, as I was positive for both, having had many symptoms over many years:worried:.

In Sep 2007 I was also d/x with lupus/like symptoms by a rheumatologist down south, and prescribed 2 Plaquenil :blush:a day too. I found it has helped in several ways, but not for scalp and body rash. Further investigations have centred since then for kidney, connective tissue, GERD, bowel polyps, thyroid nodules,stomach ulcers and now fatty liver lately, and further appointments down south with a vascular and cardiac physician next month.

Hoping you find the Plaquenil helping you, and to continue with your St Thomas doctor to guide you. Best of luck.

 

[Clare.T]

Hello Pollianna
I can see why you feel a let down. One has high hopes and so much invested in these appointments. I was rather miffed the one time DR D C was too busy to see me except to pop his head round door, especially as I found the other doc's foreign intonation hard to understand so I had to ask him several times what he meant which I found stressful. Luckily he was patient and kind.

We do like to know exactly what we have, I suppose because it is validating and something definite to tell people but lots of people do not fit neatly into the man made diagnostic boxes. If what to tell people is a problem, I would simply say "lupus" adding if need be a brief explanation
" a sort of RA". That's something most people can understand and let's face it, most people aren't genuinely interested.

I'm sorry your trip was make more arduous by that suicide.
Both my husband and our son on different trains were held up that day.
I read that the chap was a criminally insane murderer on the run.

Hugs
Clare

 

[pollianna]

The doc who saw me looked about 18 and she was not confident whilst examining me. I almost fell off the couch at one point. I guess it's funny in a sad kind of way....

I am just relieved that the man didn't jump under my train, gosh that would have been awful....

A murderer

Mary it musve been so hard for you with no specialists around. Am glad that your in safe hands now xxP