[adada]

good morning all.

Got a letter from my rheumy yesterday, he says that I have Temporal arteritis with background polymyalgia rheumatica. I quote.."Her ESR has improved from 74 in nov' to 28 in Jan,full blood count was normal apart from platelets raised but improved to 560,her bloods for ANA and ANCA were negative, her blood for smooth muscle antibody was positive at a low titre of 1:40 which is found in viral infection"

I mostly dont understand that... however I still have symptoms that do not fit in with his diagnosis.. dry mouth, pleural pain, photo sensitivity, hoarse voice, strange rashes.

Anyone out there got any ideas? or could perhaps explain blood results to me please? I'm going to see my GP this morning and I'd like to be a bit clued up...ta very much.:what:

 

[Lily]

Hi adada,

It sounds like he has run the relevant tests to diagnose Polymyalgia Rheumatica and you fit into that diagnosis. I am wondering how your Temporal Arteritis was diagnosed, did they do a biopsy?

The following article discusses diagnosis of Polymyalgia Rheumatica and mentions that a raised sed rate is present (as you have), a high number of platelets i.e. thrombocytosis (which you have), a negative ANA which you have (that's a general screening test which is almost always positive in Lupus) , and a negative ANCA (that's a test for types of vasculitis).

http://www.mayoclinic.com/health/polymyalgia-rheumatica/DS00441/DSECTION=6 The article explains these tests a bit better.

As far as the smooth muscle antibody goes it can be positive in a few conditions, but as yours is a very low reading then it could well be due to a virus as he says. I'm sorry I don't know a lot about that test. Except that it can be positive in chronic active hepatitis, cirrhosis, and infectious mononucleosis.

The fact that you are having those other symptoms though I can understand why you are questioning this.

Is he going to keep following you and monitoring? If he is then thats good because you will need to keep giving him a rundown of the sorts of symptoms you are having so he can keep retesting.

Sometimes Lupus doesnt show up straight away in bloods, it can take time. And other times the ANA is negative but the Anti Ro or La tests are positive (a lot of docs won't run those though if the ANA is negative). Those tests can also be positive with Sjogren's Syndrome too. It could be helpful to see an Opthamologist if you haven't already about the dry eyes. They can run some further tests. Also a Dermatologist could help with diagnosing what the rashes are caused by.

Hope this helps!

love
Lily

 

[adada]

thank you lily..I will continue seeing my rheumy who will be monitoring my condition for the forseeable future so lets hope he gets me sorted. The run down of the test results was very helpful, so ta for taking the time.
I saw my GP today and he said basically what I'd begun to suspect, that I just have to learn to adjust to these conditions and get on with my life as best as i can.
thankks again.x