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View Full Version : Newbie at Wits End!



encorson
10-25-2005, 12:52 PM
Hey guys!

I just wanted to stop in and say my hello's to everyone! And I want to apologize in advance for my lengthy message...lol. I'm literally at my wits end as to what I should (and can) do! I figured perhaps someone who may have been through the same things as I have, may be able to point me in a good direction.

Just to note, I have not been diagnosed with Lupus or any other type of auto-immune disorder. I'm hoping that by coming here, I will find the strength to either fight on or perhaps stop and accept my doctor's diagnosis.

For about the past four or five years I have just been sickly in nature, I guess you would call it. I have been struggeling with doctors over this time about what my condition might be. As far as they can tell, there is absolutely nothing wrong with me and in fact I have even been told that I am making myself sick and its just a psychosomatic condition.

I haven't been diagnosed with any other sort of mental disorder, such as the need to gain attention through making myself sick, so I don't understand how this could be. The only diagnosis that I have recieved is that its stress and depression. I'm not happy with that diagnosis.

Many of symptoms are: fatigue, joint pain, muscle aches and tenderness, mouth and nose ulcers, easy bruising, easy bleeding, cold hands and feet (with a pale/blue color on the ends), chest pains (especially when breathing deeply, laughing or making sudden movements), short of breath, swollen ankles/feet and hands, nausea, vomiting, confusion, memory problems, skin rashes when exposed to the sun, and occassional fevers. In my own, honest observations, I have 6 of the 11 diagnosis criteria. However, my doctor's refuse to see the connection.

More recently, I've developed a hive like rash that comes and goes on my legs, arms and back. Though this may be due to the fact I have a viral infection (respiratory infection and bronchitis) - so I'm not sure if this is something that will continue to happen or if its just for now.

These kinds of things keeps me from keeping a steady job (I haven't worked in almost 2 years) and I can barely do my own work around the house (such as laundry, cooking, and cleaning/dusting). Every time I get a job, I end up getting fired because I have to call off on my 'really bad days', which usually lasts at least 3 or 4 days. I've tried exercise and changing my diet, but still nothing has improved. What makes this even more difficult is the fact that I have a 5 year old daughter who just cannot understand why mommy can't go outside to play or why mommy just doesn't have enough energy to play.

My doctors keep telling me its stress and depression. I totally understand that depression can have a profound effect on your body, but I'm just not willing to accept that its only that. Partly because in 2000, I was having these terrible stomach aches and my doctor (not my current one) told me they were nothing. Here, it turned out to be my gall bladder, had I not gone to the hospital when I did, it would have exploded. Plus it seems awfully strange that they wish to try and push anti-depressants upon me instead of determining if depression is truly at fault here.

I did go to a Rheumatoidologist yesterday, who came to the same conclusion - stress and depression. He called me back today and said that he took a look at the blood tests my family doctor had done and they were clear across the board accept for my sediment (ESR?) test, which came back elevated. He didn't give me too much information on it and just said I shouldn't be worried, its probably nothing.

But what these doctor's don't understand is that I have to be worried. I'm 23 and can barely perfom daily, routine things. This can't be normal!! I just wish I could come by and give each and every one of you a hug. I've only been going through this for the past 5 years and many of you have been doing it longer.

My family hasn't exactly been supportive either. At first they were, but now since time has wore on, they are siding with the doctors and blame it on depression. Should I just give up and accept that my symptoms are merely those of stress and depression? I'm running out of patience and doctors to turn to! I will be most greatful for any advice and input!!

narisis7
10-26-2005, 01:48 PM
I actually know exactly what your going through, the thing with blood the tests is not the be all end all of diagnosing lupus.

I know this because 1 month prior to my 23rd b-day I was diagnosed with lupus. After having symptoms since I was 18. Although up until a Neurologist started talking to me about SLE, when I was 22, I had never even heard of it, he made me have all kinds of bloods and see a Rheumatologist ASAP, because 2 weeks before seeing him a Dermatologist dignosed me with Discoid Lupus and I met the clinical criteria for SLE.

At first both the Neurologist and Rheumatologist didn't come out and say I had systemic lupus but she did confirm that I had Discoid (which is usually a skin form only) she did also say I met the criteria for SLE, and explained about it, even to the point of learning that a surgery I had had at 19 was TOTALLY unnecessary because I was actually showing early warning signs of lupus, since 16. All of my bloodwork was totally negative so she tried me on an antimalarial for the discoid lesions that I had, and to "see" if my other symptoms improved, it took 3 months to kick in and what an absolute miracle once it did. The discoid lesions were completely gone, one was hugh because I had had it since I was 18, and all of my other symptoms went away as well. That was the proof necessary to prove once and for all that I had SLE and not just Discoid.

I was offically diagnosed with a rare form of lupus known as ANA-Negative Systemic Lupus. So I can say that bloodwork is not proof positive of having or not having lupus. Mine was proven by getting radically better on an antimalarial drug.

Does your insurance cover any teaching hospitals in your area? If so try scheduling an appt with a Rheumatologist there. They tend to up on more up on current information than a local doctor. My Rheumatologist was trained at Mount Sinai, so she was more open minded about my symptoms, and the possibility that I did have a rare form of lupus.

I hope this helps a little in getting to the bottom of what is making you so sick.

Mitch
10-27-2005, 07:20 PM
Hi encorson! I hope any dr. you went to did, at least run some of the blood tests associated w/lupus. But even still, if they did run them and came out negative - I have heard of many people not technically dx'd w/lupus (negative blood tests, etc.) but their dr.s still treat the symptoms as if it were lupus. I have to say, reading your post, to me sounds like pretty much all the classic symptoms of lupus, and possible Sjogrens's. I would start fresh w/ a new doc. I can't believe even today, there are still so many incidents of dr's dxing their patients w/ depression - it just seems like an easy way out. I would ask them to explain how they come up w/ a depression dx when you have all of these physical, (and in my opinion) classic symptoms of lupus. I would just fire away w/ all my ?'s if they couldn't justify a dx of depression. My personal experience is with a woman rheumy - I just thing they're the best - they know how to listen and can relate to women not being taken seriously better. Just seems to me like "less ego" more pro-active - getting to the bottom of it - kind of attitude. Good luck, keep us posted!
Mitch

newmommy
10-29-2005, 04:01 PM
Hi

I read your post and I have to say that there is no way that that's depression, For me it took three years to be diagnosed I had symptoms for so long and I went through a lot of different docs because face it some are just not good. But I have to say that you sound like you have lupus, my tests were negitive at first and then as time went on it showed in the blood tests, I was diagnosed with RA first cause of my swollen and achy joints, so keep at it and rest lots of rest and no stress, that will only make it worse.

I would see another doc and keep at it, obviously it's something and that something needs to be treated.

Take care and i'll be praying for you!