Frustrated

[ladybrayton3]

Sometimes I feel like it all really is in my head...as that is what my whole family (with the exception of my husband) thinks. I almost wish I had positive bloods so I wouldn't feel like a nut-job. Here's my list so far:

ANA 1:320 speckled
lupus anticoagulant: positive
sed-rate: normal at 18
complement levels: slightly above normal
Ds DNA: normal
RNP: normal
anti sm: normal
a few others were normal as well.

I did see my rheumie...he is giving me lodine xl 500 twice a day and tramadol for pain. He was considering plaquinel (sp?) depending on my complement levels, but with them being elevated...I doubt I will get that. I will call him today to see what his interpretation of my labs is.

He has diagnosed me with restless legs, raynauds, and hypercoaguability so far (forgive my horrible spelling). He is also talking of doing some physical therapy and a sleep study. I've only seen him 3 times, but he seems to be pretty on top of things. At least I found a doc who takes me seriously and is giving me some treatment for symptomatic relief.

I guess I'm in the pity pot right now and just need a little reassurance. I just want to feel normal and I want to be able to do the little things...like dance and get through a day without pain. I have been feeling worse lately as I had to go back to full-time work for financial reasons. I am on my feet all day and my body is paying the price.

Thanks for listening to me vent.

[helloos]

Hi Lady

I think that you have some things showing up in your blood work. I know that you say you think your rhemo is on top of things so that means you probably like him and trust him. But, have you considered seeing another rhemo for a second opinion? It may be worth your while to have another set of eyes look things over to make sure that it is the opinion of both docs of what you have.

It is obvious that something is going on and you have been diagnosed with such, so don't think it is all in your head. It is not !

I think we all think that one day or another, but just remind yourself, it is not in your head, these things are happening and you are doing what you can to get them under control.

Hang in there - better days ahead.

[Maia]

Sometimes it can take a while for other things to show up in the bloodwork, and with that titre for ANA that means it is much more likely to be some kind of autoimmune process.

I think it's great that your rheumy is taking his time, making sure of things, yet still giving you some symptomatic treatment. However, there does reach a point when if your symptoms continue, and if you believe you meet the criteria (i.e. 4 (or more) of the 11 on the list) then you probably should start directly questioning him as to why not starting Plaquenil at least. Or seek a second opinion as already suggested.

I love visiting Chicago ;) Best wishes...

[Clare.T]

My question would be, why is he hesitating about the Plaquenil ?

Not everybody has low complements ! So that seems a bit arbitrary.
If he is sure you have an autoimmune connective tissue disease, then it needs treating.
Plaquenil also slightly thins the blood.
The coagulant and anti cardiolipin tests need to be done twice at intervals of at least six weeks to make sure they are not flukes. Levels can be raised for all sorts of reasons, as part of our immune systems normal functioning.

It's good that he has faith in you but equally important that you have faith in him. He should be able to give you a convincing explanation of what he's thinking and doing.
The physio etc stuff should be alongside the rest, in my non medical opinion. You are the one who suffers if he's reluctant to diagnose and slow to treat.

All the best

Clare

[ladybrayton3]

Thanks for the replies. My ANA and lupus anticoagluant have been positive consistently for 4 years. My ANA is raising. Initially it was borderline or low positive at 1:80. This year it is consistently between 1:160-1:320. I just started seeing my rheumy this year. I saw a different one 4 years ago that said, "there's nothing wrong with you" so I stopped seeing him. I had problems with my insurance over the years and was unable to get a referral to see a rheumy until recently. The one I currently see is the only one on my insurance plan, but i get PPO insurance in January and then I can see just about anybody that I want.

I will consider the second opinion. That is a good idea.

Can anyone tell me if the pain gets any better? I am okay with the meds, but without the meds I wouldn't be able to function. In the past years I have had good times and bad times. Lately the bad times are almost all of the time.

Once again, thanks for the replies.
-angela-