Almost diagnosed ???

[ReneeNZ]

Hi everyone - some may remember me, most probably won't. I first came here about 15 months ago looking for some info on elevated antiphospholipids - I knew practically nothing about auto-immune diseases at that time. A lot has happened and I have had heaps of all sorts of tests mainly because I couldn't get a referral to a rheumy on the NZ Health System for over a year so my GP decided that I had all sorts of other things - in particular she was sure I had osteo arthritis and needed hip replacements. At that time I came to the forum and said it seemed that I really didn't belong here - felt something of a fraud amongst some of you really sick people. Suffice to say I don't have RA or osteo!

Long story short - after being all around the houses with various specialists I finally asked for a private rheumy consultation. Had my first one 7 weeks ago and my second one this week. First time I remembered everything I had read here and took a short list of symptoms - which he welcomed - and he was able to isolate the bad pain I had been experiencing - turned out to be inflamed soft tissue twixt hips and thighs. He ordered a screed of bloods and when I brought them to this site to compare with the info provided here I thought it was a full lupus panel.
2nd appt was just two days ago - he administered cortisone injections into both sides of the body and then told me that there were sufficient 'positives' in my blood results to warrant him believing I have an 'auto-immune' disease - I did find out that I had positive ANA and ESR and some other things - and I blew it! I KNEW I should ask for a copy of all the results but everything went clean out of my head so I don't know the titers or readings of anything style_emoticons/<#EMO_DIR#>/doh.gif . The rheumy said he was not willing to put any label on what is wrong at this stage but he mentioned both MCTD and lupus in passing, as it were!! He sent me for two more blood tests - one was a repeat of the ANA and the other C3 and C4 Complements which I presume he didn't do the first time around. He added that if the results are as he anticipates he will probably be starting me on Plaquenil or Prednisone in two weeks when the results are in.

Does this sound like he is doing everything right? He's a lovely person - listening seems to be his strong point - I suppose I am just taken aback that after knowing how long it can take to get a diagnosis I seem to be shaping up to one fairly quickly - 15 months isn't long is it?? Or is it all too fast that my very first lupus panel test threw up enough to tell him these things??

I will see my GP shortly - she will have copies of my results and she will copy them off for me so I'll b able to give better information.

In the meantime I am so grateful the site is here and still going strong - and a little surprised to find myself posting again.

Any comments from the very well informed would be most gratefully received style_emoticons/<#EMO_DIR#>/foryou.gif -

[raggedyann1]

Renee,

When I saw your name tonight I remembered you but not what had happened. I am so glad you came back here. Yes it sounds like you have a wonderful rheumy. He is running bloods and taking your symptoms into account. He is being careful but still gave you injections to help relieve your pain. He is taking you seriously since your appts keep being 2 weeks apart.

Please don't worry about not remembering to ask for copies of your blood work. We have all done things like that at one point or another. Personally I have been lax in keeping my copy of my medical records up to date. I am glad you want to be informed and as you said you will see your GP and get copies then.

MCTD is rarer than lupus and we have quite a few mixies who are members here. MCTD has components of lupus and other connective tissue diseases. Some get myositis type symptoms and others get scleroderma type symptoms. Your rheumy can tell you what he thinks you have mixed in with the lupus. Don't spend too much time checking out myositis and scleroderma till you have talked with your rheumy. Remember when you do research them that with MCTD you normally dont get the full blown problems of the other diseases although there can be organ damage with MCTD like lupus.

If you are asking if it sounds like you belong here yes it does. I am sorry that you left the first time. There are many members here who have had a long journey to a diagnosis like you have.

Take care,
Karen

[ReneeNZ]

Thank you very much indeed for that feedback Karen - I do remember 'talking' with you last time I was here style_emoticons/<#EMO_DIR#>/Thanx.gif

It seems that I have lucked in to a good rheumatologist from what you say - although he did come enthusiastically recommended by a neighbour with fibromyalgia! It's not that I feel I have waited a long time for a tentative diagnosis - I am so aware of others who have waited years - it's just that he seemed to be almost ready to diagnose after just a couple of visits (both an hour long and very thorough) and I wondered if that was a bit quick>> Some of us are never satisfied are we??? style_emoticons/<#EMO_DIR#>/wacko.gif style_emoticons/<#EMO_DIR#>/laugh.gif

I have already goggled the conditions you mentioned immediately after my appt - I remember now thinking ages ago that polymyositis sounded the closest to my particular symptoms. However - I was very circumspect with my rheumatologist and I didn't let a word of self-diagnosis 'stuff' cross my lips. It was rather funny really because at the end of the first consultation he said quite happily that if I had a computer go ahead and read up anything as long as I was confident that it was from a professional and authentic source!!! style_emoticons/<#EMO_DIR#>/woohoo.gif

I truly appreciate all you have said Karen and I will pop in again after my next talk to the rheumy in 2 weeks time - though I have never REALLY left the site to be honest - come here at least twice a week!! . style_emoticons/<#EMO_DIR#>/goodvibes.gif

[Lily]

Hi Renee style_emoticons/<#EMO_DIR#>/wavey.gif of course we remember you!

I'm so glad you were able to see this guy and no it doesnt sound like he's being hasty in his decisions or conclusions, it seems like he is thorough and knows his stuff. What stood out most is that you said he listens!
That is soooooooo important when trying to diagnose our conditions........... as important as running all the right tests, moreso if those tests dont fall into line straight away. We have a million and one presentations of this and none of us are identical, so a doc who listens and takes it all into consideration is a doc worth hanging on to.

Good luck with your other tests. C3 & C4 can often show a tendency more towards something like Lupus if everything else falls into line as well. It is used up when there is an immune mediated problem going on and there is less circulating in the blood. It will further help him to put all this together.

Let us know how you get along.

love
Lily

[ReneeNZ]

Hello Lily from Oz!!!! How lovely to 'talk' to you again - and thank you for responding to my message. style_emoticons/<#EMO_DIR#>/foryou.gif

The information about C3 and C4 was very helpful - I really should, at this stage, re-read the whole site - I had stopped doing that because I thought it was not going to be applicable though I have continued to read all the posts as they come up.

It is sounding like my rheumy is a very good one - I must say I came away with a feeling of having every confidence in him! I agree about the listening skills - they are vital - I found that even if he didn't acknowledge something I told him (except with a slight nod) he brought it up again a little later and it was obvious he was quietely absorbing everything.

So I seem to be lucky! One thing I am very fortunate in - as you may recall Lily - I am of, er, mature, years and I truly feel for those who are finding that they have to face these kinds of health problems at an early age - it is humbling to see how bravely most of you are coping with families to care for and I salute you all. At least for me these days I mainly only have myself and my husband to look after.

Appreciate your reply so much Lily - and trust that you are as well as possible!! I will definitely post when I hear what the doc has to say about my blood results! style_emoticons/<#EMO_DIR#>/wub.gif