An Update

[jaygee]

Hi All.  I went on holiday for a week to Jamaica, it was sooooo good to be able to rest for an entire week, with nothing much to do except enjoy the view and a good book.  I know that sunshine is a problem for most Sjoggies, and I don't lie in the sun too long, and I'm ok.  In fact, I slept for almost the entire week 

My eyes didn't bother me at all (they were awful following the long flight), but it was quite humid, and so my eyes liked that  .

Anyhow, I got a copy of the letter, following my initial rheumy appointment on 30 May, that he has sent to my doctor.  He wants the doctor to run the following blood tests, and I am booked in to have the bloods taken this Friday:-

1.  Full blood count
2.  ESR
3.  CRP
4.  Full biochemistry
5.  Thyroid function tests
6.  Serum CK
7.  Rheumatoid factor
8.  Anti nuclear factor
9.  ENA antibodies (in particular SSA and SSB antibodies as well as cardiolipin antibodies)

He also says he wants to do a nerve conduction test, but I already had this done a few weeks ago.  He says, in the letter to my GP, that he wants to either confirm or rule out Primary Sjogrens as well as carpal tunnel syndrome.  When I next see him, I will advise that I already had the nerve conduction tests done (sure I mentioned this at my appointment?).

He mentions also that I have Raynaud's like complaints and clear livedo reticularsis.

He says that I have had no skin rashes, but as luck would have it, I have bumps all over the place, which started a few days ago.  I guess that it was the sun that did it.  Nothing really to see, but if you run your hand over my arms (or anywhere really LOL!), you can feel them.  I don't seem to get a tan these days, I just go red and then lumpy.  I was wearing a high factor sun protection, and only spent a couple of hours, here and there, in the sunshine.

Anyway, thanks for reading and if someone could explain those tests and what they are looking for I'd be grateful.  xx

[Liz D.]

Hi Jaygee,

I found a great website that helps to explain a lot of tests we have.  You may want to check it out.  It is labtestsonline.org. 

All the tests you listed are pretty standard for checking to see if you have SJS.  They should give some definitive answers. 

I have the same problem with the sun now, too.  I get little bumps all over my body.  I used to tan beautifully when I was younger and now I have to stay completely out of the sun or I become miserable.  Oh well, nature of the beast, I guess.

Liz D.

[jaygee]

Thanks for that Liz.  I have had a look at the website and have learned a lot more about the tests (and have even been able to work out what they are testing me for, which seems like quite a few things).