[Trindy]

Hi I would like to thank all of you who gave me re-assurance about my appointment today as I was worried that everyone's experience was so negative. Well you were right The clinic was wonderful. Everyone was really kind and the doc was great. Full of energy, keen and willing to listen. He was impressed with my lists of symptoms and history and thought the photos of my rash really hepful.

I had full physical exam, masses of blood tests, 14 of those bottle thinks, x-rays on hands and chest and schrimers which was positive.

Now the part that's confusing me. He said query lupus, and then went on to mention connective tissue disease (and I'm not sure what that is) he said there were lots of them and I could have one or multiple, then he was going to give me a leaflet then changed his mind. he also said that he was sure I also had fibromyalgia So now I'm confused. I'm assuming that it would seem that I could have Sjogren's. I had that test after I'd seen the doc and the nurse said the strips were barely wet after 5 mins.

Oh and he also told me to start taking the Ergocalciferol as soon as I'd had blood taken.

Overall though I would say that this was the best hospital experience I have had out of my eleven referrals but I suppose I'm still in the undiagnosed club but then you all told me to expect this so weird as it may sound I left smiling and feeling soooo much better.

 

[debatat]

Hi Trindy, I am so pleased that you had such a positive hospital experience. A good rheumy is so important. Lupus is a connective tissue disorder. The dry eyes which were confirmed by the schirmer test can occur in RA, lupus and sjorgens syndrome. The rheumy was saying you do have a disorder, he is not sure which one or if it is an overlap known as MCTD, mixed connective tissue disorder. You can be given a diagnosis of UCTD, which is undifferentiated connective tissue disorder. So you are on the right path to diagnosis.
Lots of people also have fibromyalgia, I am glad you are feeling positive. When do you go back to see him?

Deb x

 

[lin]

so glad you had such a positive apointment, lets just wait now see what comes back. things can sometimes take a while, your bloods will take a while to come back too. Well some of them

so happy all went well Lin xxxxxxxxxxxxx

 

[KarolH]

Very happy your appointment went well.

Maybe when the lab work comes back you will go from Limbo land to diagnosed and enlightened.

Keep us posted.:wink2:

 

[Trindy]

Thanks Debatat

I need to go back in 6 weeks so not too bad. The strange thing is that he said to start the Ergocalciferol so my GP has given me the prescritpion for it this p.m. and none of the pharmacies stock it. They only have it wth calcium. My pharmacy says it is just vitamin D and she has never stocked it before. So now I am mystified and will have to speak to my GP after the week end. Anyway still feeling positive.

 

[KarolH]

Trindy they want to get your Vitamin D level increased.

Most of us are Vitamin d deficient.

 

[Katharine]

Hi Trindy

It sounds like you had a great appointment :thumbs:

The reason the doc is talking about connective tissue disease is simply because he can't yet decide which connective tissue disease you have. Lupus is one, sjorgens is another and there's a whole list of them. Basically it means he's taking you very seriously and that he will maybe be able to decide when the tests come back.

Sometimes deciding exactly which connective tissue disease might be difficult (depending on what anti-bodies show up in bloods) as people can have overlaps of diseases (I have lupus and polymyositis as well as APS and hashimotos thyroiditis) and some people can have a mix of diseases that is then referred to as MCTD (Mixed Connective Tissue Disease).

It is very common for lupus sufferers to also have fibromyalgia. Fibromyalgia has more specific clinical symptoms (fibromyalgia pressure points) which can make its diagnosis easier. Around 30% of people with lupus will have fibro and fibro can be responsible for a lot of fatigue and also a different type of very debilitating pain. It is often treated with anti-depressants, not because you are depressed but because they can modify the way the brain perceives pain and so reduce pain levels and help recover restorative sleep.

The treatment for most connective tissue diseases is the same so what "label" you end up with will matter a lot less than whether the treatment is working or not. Some treatments will be more specific (for example some RA treatments don't suit lupus patients) and the treatment for fibro is different and given in conjunction with whatever other treatment you are receiving.

I hope that helps a bit - not sure I'm in "clear explaining" mode tonight :lol:

Katharine

 

[Trindy]

Thank you

:thanx: Katherine I think you are in fine mood tonight and your explanation is very clear and has helped me to get a grip on connective tissue disease. I got the impression that he would have liked to explain more but couldn't until he had the test results which is very professional and I respect that.

I would just like to thank everyone yourself especially for all your support this site has been such a comfort to me. Last week I was going out of my mind thinking they wouldn't believe me but they asked all the right questions before I had time to blurt everything out.

Thank you to everyone who advised me on the right things to do and to anyone approaching their first Rheumy appointment listen to the advice you get on this site they know what they are taking about

Can't be right be so elated when someone tells you you really are ill

 

[Trindy]

Just had another thought perhaps that's why they gave me gabapentin I think that might help with the way my brain perceives pain.

 

[Katharine]

Yes Trindy gabapentin can help with pain, mainly nerve related pain but I believe it is also showing good results for treating fibro pain.

 

[Lily]

Hi Trindy,

That sounds like an excellent appointment :yes: I'm glad it went so well and you being so prepared no doubt helped the doc out too.

Good luck with your test results.

Oh btw the pharmacy would be able to order in the Vitamin D if they don't stock it - they are going to get it for you aren't they?

love
Lily

 

[keebler]

Hi Trindy,

What a good appointment you had.

Finding the right doctor makes all the difference. :woohoo:

Take care,
Lyn

 

[KarolH]

It Can't be right to be so elated when someone tells you you really are ill

Oh I disagree.:lol::lol::lol:

It was verification and validation for me.

I felt the weight of the world come off my shoulders when I was given a reason for why I felt so bad. I knew then I was not going mad and it was not all in my head.:wink2:

 

[Trindy]

All day phoning pharmacies

Thank you.

No none of the pharmacies can get me the ergcalciferol in the dose or type I've been prescribed.:wall:

I need capsules of 1.25 mg and nobody stocks them and the ones who offered to order them either say there's a problem with the manufacture or that they can only get them in tablet form. I phoned a national company hours ago who said they would get back to me but so far on luck:tantrum:

I will have to contact my GP on Monday to see if he can fix it in some way.

Trindy

 

[keebler]

Hi Trindy,

Good idea to give your doc a call back.

I went off of a med that I was taking, because they couldn't get a hold of it it the mgs that I needed. I wasn't going to pay $60.00 a month for the name brand to stay on it. I had a talk with my doctor about it.

Hopefully your doctor will quickly make this problem right for you.

Love,
Lyn

 

[Lily]

Geesh Trindy I sure hope someone can get a hold of them for you.

The one I had to take was 1000iu of Vitamin D3 I think. Do you have kidney problems or a parathyroid problem, often that's when they prescribe the one you have been given (it's vitamin D2 a different preparation).

I will pm you a UK pharmacy site you should be able to get it from via the net.

love
Lily

 

[Trindy]

Yes I have chronic kidney failure although not too serious at the moment but that was why my GP wanted a second opinion about the D2 from the Rheumy because it actually counts as 50,000 units hence the difficulty getting hold of it. I have also had progressively high parathyroid blood tests which was why I was originally sent to an endo as my GP thought I has a parathyroid tumour. The rheumy is also checking out my PTH. Neverthe less I am still feeling positive! Thank you once again for your help.

Love Trindy