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View Full Version : My doctor suspects Lupus...



Jayne
04-08-2004, 06:43 PM
Hello,

I have read some of your posts and found them to be quite informative. It is nice to see such an encouraging group in this forum.

I have not been diagnosed with Lupus, but my doctor is sending me to a specialist on April 12th because she suspects Lupus. I'm not sure how I feel about this.

I don't really know why she (my doctor) is sending me to a specialist, she did initial bloodwork that came out negative for ANA. Wouldn't that rule out Lupus?

I have had a rash on my face for 2 years now, it is on both cheeks as well as my nose...however it is much redder and more affected on one side than the other. Another symptom is that sometimes (but not always), I get so cold, even in temperate or warm climate conditions...especially my hands and feet. Also, I began getting migraines at about the same time my rash appeared, although they seem to have subsided almost completely.

I do not have joint pain, that I'm aware of...but my pain tolerance is really high. A year and a half ago I badly fractured my tailbone but didn't see a doctor for almost a week because I thought it was just a bruising that would go away on its own...I even taught 2 dance classes that week. Even when I was young (13 years old) I once danced in a competition on a severely sprained ankle...yeah I felt it, but I tend to easily ignore most types of pain. The only time I had joint pain that I can remember was about 3 weeks ago all through one night my hips and knees were driving me crazy...but that doesn't exactly mean anything was wrong with me, it was only that night.

My husband thought I was losing too much hair about a year ago, he wanted me to see a doctor about it, but I just waited it out and I think it's okay now. I just assumed my hair loss was due to stress and aging (I'm now only 30 though).

I have heard that autoimmune diseases are "familiar"...not genetic, but can run in families. My mom has Multiple Sclerosis, and my aunt on my dad's side has SLE Lupus.

Am I in denial, or am I being reasonable that I probably don't have Lupus? I guess I think of my aunt, and she is so sick...I do not feel sick at all really...just inconvenienced and a bit embarassed of the rash that won't go away.

Should I be keeping a health/symptom journal and writing down every ache and pain...or is that going overboard? I'm just not sure what to think or do. Are there certain "signature" signs or symptoms that I should be watching for and noting? Another problem is that I quite literally have a poor memory. I am truly apt to have a specific symptom, and yet forget about it within a few days...which doesn't help when my doctor asks me how I'm doing. I'll just say "I feel fine" (and then I'll wonder why I bothered making this appointment) :-D .

Jayne
04-09-2004, 10:20 AM
...I'm sorry, I realized I should have origianally posted in Lauri's Lounge.

After reading more posts this morning, my mind turns to other symptoms I've had in the past couple of years...things I just ignored because they would come and go - so I thought that the doctor would not be interested in problems that already disappeared.

Also, would ANA always be at the same level, or would it be higher for times when the disease is flaring? I just wonder if my ANA test came back negative because perhaps my symptoms are so mild...could my test be different at different times?

Thank you so much for your time.

Jayne

mmichelle
04-09-2004, 03:06 PM
Yes, your ANA can go up and down. There are other test that a Rhuematologist will run along with the ANA that will help him determine if you have Lupus or not.

You have a few of the Lupus symptoms... It could be Lupus, but it could also be something else. My advise to you is to see a Rhuematalogist. They specialize in ruling in or out Lupus. There are also different kinds of Lupus. You may have a kind that does not involve the organs. (Let's hope that is the case for you if you have it).

If the "specialist" that your doctor is refering you to is not a Rhuemy... Then I would call your insurance company to find Rhuemies that are a provider with your insurance company and make an appt with one.

I have had a lot of symptoms since I was very young... but as I get older (I'm 32) my fatigue is worse now then it ever was before in my life. This is to tell you that symptoms can come and go. some symptoms or illnesses can disappear and later brand new ones appear. I didn't feel that bad either, in between my medical issues.

Lupus is unique in that the severity of it and all the symptoms or organs effected by it will vary from person to person.

Don't rule it out. But... If you waste your time to go to a specialist and it turns out that you don't have Lupus. Then you didn't waste your time at all. You are one step further along in your diagnostic process by at least knowing that it's not Lupus and then your doctor can move on to other possible causes.

There is a reason for your symptoms. Loosing hair, having a rash, etc... those are symptoms of your body telling you something isn't right. You may have an allergy, you may have a dermatoligical issue. Regardless of the cause, you need to find out what it is your body is trying to tell you. Then you will at least be able to treat it.

Keeping a log isn't going overboard. It may be what helps your doctors give you a proper diagnosis.

I hope this helps and please let us know how you are, what your diagnosis is...

Take care,
Michelle

Missy
04-21-2004, 07:12 PM
I'm going to "Amen" what mmichelle said. Keeping a log of symptoms has helped both my sister and I. We both have SLE, but hers is very mild and seems to not be an issue right now
(after she went off of birth control pills) and mine involves my kidneys pretty severely right now. Yet, like you, I still feel fine a lot of the time. It's a very confusing disease, because I appear normal (I have no rash or joint problems), and some days or parts of days I feel normal, and other days I just can't seem to sleep enough. I'm not working right now, and sometimes feel like I could, but other times I feel like managing my meds and Dr. appointments is practically a full-time job. Oh, my maternal Aunt has Rheumatoid Arthritis, but her ANA is negative - and she has lots of symptoms. My sister's and I's are bothe positive. I don't know what my sister's is now, but I know mine is really high.

Good luck and get theeself to a Rheumatologist. They are our friends. :D

Missy