[Suzanne88]

Hi, I'll be seeing a Rheumatologist for the first time in September and wanted to get an idea of what he might do during my visit.

February of 2007, my gp did an ANA screening and it came back positive (titer of 1:640 and homogenous). At the time, it didn't mean anything to me and I didn't want to go to another doctor and be put on a bunch of meds I didn't think I needed, so I cancelled the appointment my gp made with a rheumatologist and told him I wanted to wait.
This year I began having numbness and pain in my leg we believe was caused by my right ovary. Anyway, I was referred to a neurologist when the leg pain started because they thought it could be nerve related and during one of the visits I told him about the ANA test and he referred me to a Rheumatologist (who I see in September because they are so booked--only 2 in area).

Last month I had a hysterectomy (left ovary remains) and had extensive endometriosis in my uterus. These are some of my symptoms: tired constantly but at the same time I have extreme trouble getting to sleep and sometimes staying asleep so I usually take Melatonin, 'flare-ups' which vary in intensity, joint aches, and alot of times (even before hysterectomy) I have bladder problems that feel like a UTI but isn't. I've also been having some sores in my nose (none in mouth and no skin problems) that my allergist gave me an antibiotic for (I have extreme allergies in eyes and nose). During the flare ups, I feel like I have the flu and almost always my collarbone causes severe pain for some reason. Before the hysterectomy I went to the hopsital for the normal pre-op tests and there was protein in my urine (not sure how much) and both my white and red blood cell count were below normal. Now, the hospital nor my doctor never said anything to me and I was told that my hemoglobin was fine, whatever that means. After the hysterectomy (I also had a burch procedure--tacking the bladder up, during the hyst.) I went to the doctor because I felt like I had a bladder infection and the only thing they found was protein in my urine. They did a culture and it came back negative.

This is the first time since the ANA test that I've been even remotely worried or suspicious. I'm not one to run to the doctor, more like run from them and I feel like I'm getting carried away even worrying about it. I haven't told anyone that this scares me (at least the protein part scares me) and I'd just like some reassurance, especially with the doctors visit coming up. I'm not sure what to expect. Does anyone have any advice for me for the first visit? Thanks for listening to all this!
Suzanne

 

[Katharine]

Hi Suzanne and welcome

I'm not one of the best on advice for rheumies appointments but wanted to say hi and do my best.

Your list of symptoms definitely warrants further investigation and many, if not most, of your symptoms are very typical of lupus (or can be connected to it) or another auto-immune disease.

If you do have lupus, getting effective treatment can make a huge difference to your quality of life and to disease activity.

As most of us suffer from white coat syndrome to one degree or another, I think that making a list of your symptoms and history is very useful. If you have had comments or referrals from other docs mention them. It gives more credibitility - this is not just in "your" mind. Our symptoms can be so varying that even a good doc can have difficulty piecing it all together so learning a little about the disease and its symptoms can be helpful. You can begin to do that by looking at the diagnostic criteria pinned at the top of "not yet diagnosed"

http://www.thelupussite.com/forum/showthread.php?t=33123

Try to keep away from ever saying to a doc "I think I have..." it doesn't tend to go down well.

If you have joints that swell visibly or rashes, you MUST take photos of them and take the photos along with you. They are often very helpful in diagnosis and, of course, always disappear on the day of the appointment.

It is highly unlikey that you will walk out of a first appointment with a diagnosis. Doctors are very careful about giving a lupus diagnosis for many reasons. One being that it is very difficult for us, as patients, to then get any form of insurance after. He or she will most likely order a whole new batch of blood tests as they can do far more specific ones which can perhaps determine exactly which disease you might have.

If you do get a diagnosis of lupus you need to know that today's treatment options have greatly improved. It is a serious disease and must be treated but when treated it rarely decreases life expectancy and most people will go back to leading pretty much normal lives once their treatment is well balanced. You need to remember that the members who post frequently here are usually "newly diagnosed", "not yet diagnosed" or the more severely affected. Many others are out there too busy leading their lives to come and post here.

The first drug that most people are put on is called plaquenil. It is a very safe drug with few or no side effects. It takes a long time to kick in (3-6 months, sometimes as much as 12) but is used as a baseline drug and is disease modifying. That means that it will reduce the frequency and severity of flares and therefore the severity of the disease.

If that drug isn't enough, others can be added and many of us (for whom plaquenil is not enough) are on finely tuned cocktails of drugs which give far less side effects than being on massive doses of one thing.

I hope that helps a little, bye for now,

Katharine

 

[Suzanne88]

Katharine,
Thanks so much for the advice... I think it'll help just having some idea of what to expect when I go for the appointment.
Suzanne