If it isn’t Lupus, what is it?

I am so frustrated! Have you ever gone to a doctor with symptoms and they act like it is no big deal to find out what the problem is? Well I have that happening now and it had happened before hand with another problem I had.

The first instance was with my leg and back pain. I was having shooting nerve pain down my right leg and my back was hurting very badly. I lived in Wisconsin at the time. I go see a doctor and tell him something is wrong and want to know what it is. I explain to him my symptoms. Those symptoms were these:

1. Back pain
2. Shooting, stabbing pain down the right leg
3. Major fatigue
4. Loss of appetite
5. Hair loss
6. And a general feeling of being ill
7. Joint pain in my hands, wrists and feet

At first he wanted to suggest it was depression or stress. That didn’t go over well with me and told him, “Look something is wrong and this isn’t just depression!” So the doctor orders an X-ray. That X-ray showed nothing abnormal. He ordered no other tests to be done and was confident what the problem was.

He said the pain in the leg was stemming from having shingles at an earlier age. HE WAS TOTALLY WRONG but it took years after the fact for me to find out it was something much more serious, and that it would have only taken an MRI to be definite of the problem.

So years had passed and I just dealt with these symptoms. As the years passed the symptoms got much worse. It came down to where I couldn’t walk at all and it was at this time I found a doctor who cared enough to find out what the problem was. She ordered blood tests and said she wanted to do an MRI to find out if anything was there.

Sure enough the MRI had shown there was a tumor attached to a nerve next to my spine. She then referred me to a surgeon. Unfortunately he could not remove the tumor so he referred me to a neurologist who treats me for the pain of the tumor.

Now that I have seen a neurologist for the tumor for a year I have been told by him that the other symptoms I have will not be caused from the tumor in my back. Some symptoms are new. Those symptoms are these:

1. Hair loss
2. Fatigue
3. General feeling of being ill
4. Aches in my muscles (newer symptom)
5. Joint pain in my hands, wrist and feet
6. Sores in my nose and mouth at times (newer symptom)
7. Loss of appetite
8. Battles of anemia over the years

So I decide to see another doctor to get an idea of what could be wrong. She referred me to a rheumatologist. I begin to think I finally will know what is wrong with me. Boy was I wrong.

I go to see this doctor and explain to him my symptoms that MOST concern me. I fill out a symptom sheet to include all my symptoms though. The ones that most concern me that I explained to him were:

1. Hair loss
2. Feeling ill in general
3. Mouth and nose sores
4. Hand pain

I know that it is not rheumatoid arthritis. They checked me for the factor and came back negative. That is great news.

While visiting this doctor he tells me that it is not rheumatoid arthritis period. He repeats this like five times. I get frustrated because I already know that first of all and second I want to know WHAT IT IS that is causing these symptoms.

I tell him my aunt has systemic lupus and it concerns me some that I might have it. He says that I do not have lupus period. He said my anti nuclear antibody test was negative. OK I thought then what is going on? He had no answers and he didn’t seem concerned with even hearing my complaints of symptoms. He didn’t seem as if he was even listening to me. He didn’t order any blood tests, which I found very strange. I would think he would have wanted blood tests to see what else could be wrong.

My hair loss he tried to blame on dandruff. I then told him about visiting a doctor for my scalp after my back surgery and they said it was not causing hair loss and I have no signs of psoriasis. So that dropped my confidence in him more. It was as if he was trying to simply write me off so that he could just move on to his next patient.

So I leave very upset and I break down to cry in the car ride home. I was so frustrated that I had no answers still and that the doctor didn’t to even care that something is wrong with me. I am thankful it isn’t RA and I am thankful if it really isn’t Lupus. I am upset that I don’t know what it is still today and he shown no interest to even want to find out. You have any idea how it feels to know something is wrong but the doctors just don’t seem to care? You have any idea how it is to feel the way I do and never knowing what it is caused from? It would make you break down and cry too.

I get home and decide to do my own research as I have been doing for years when it concerns my health. It is sad when you have to try to diagnose yourself. While searching for my symptoms I found a medical site that allows you to put in every symptom you have. Once you do that it lists diseases that have more than one of the symptoms you listed. It also lists other diseases that have at least ONE of the symptoms you listed.

Now as I put my symptoms the list got shorter for the diseases that match my symptoms. When I finished it, it had only listed one disease that it could be matching all my symptoms. That disease was Lupus.

I have read about Lupus and I know it is one of the toughest diseases to diagnose. I even read it can take years to truly know without a doubt that is what it is. So now I am left with no definite answer as to what is wrong with me. My anti nuclear antibody test was negative so that leaves the doctor saying no to Lupus. Could I still possibly have Lupus even if that test is not positive at this time? I have no idea. I would have asked the guy that if he would have shown better interest in my situation. It took my aunt years to find out that she had Lupus. She had told me her doctor thought she had Lupus before her anti nuclear antibody test came back positive.

The rheumatologist I was referred to suggested that I see him again in July. Why should I waste my money and time?

I will continue to live my life the way it is. My hair will continue to clog the drain in the tub and eventually maybe I’ll be bald. I can barely open jars now. It is harder for me to open soda cans, to lift things, to type and to write at times. My hands will continue to get worse and eventually I won’t be able to use them at all. I mean this is just what I imagine my future holds. I will continue to sleep like I was a hibernating bear. The other symptoms will probably get worse as they have over the last few years and I just have to settle for that I guess. I mean thanks to the useless medical system and doctors we seem to have.

If it isn’t Lupus I want to know what it is. I want a doctor to investigate to find out. That IS THEIR JOB! That is a dream though. I can say that through experience. Good doctors are FEW and FAR BETWEEN!

I just want to know what is wrong with me! I just want to feel better! Oh doctor, oh doctor where could you be? I need a doctor that can tell what is wrong with me!

(Everything I’ve read points to Lupus)

About JustOrdinary

Hello my name is Rachel…around here I’m best known as Just Ordinary. I created this blog page to share pieces of my life with you, the reader, also to share my projects, and writings. This blog page I have created is a collection of realty and fiction. Not everything I write pertains to me or my life.

Posted on Monday, January 22, 2007, in health, Journal Pages. Bookmark the permalink. 2 Comments.

  1. Wow, it is good to know that other women are going throught the same thing I am going through. I am having an awful time with my doctors too, and they make me feel like I am a Drama Queen, or I am just stressed out. I actually started questioning if I was making this up, or if I might be being a drama queen, but I do not know anyone who would make up this pain, and it is something I have NEVER felt before! Please keep in touch with me and let me know how it all turns out!

  2. you might have discoid lupus. where there is a coin-sized patch on your scalp where no hair grows. your lupus test will come back negative if you have this. check your scalp.neck too.

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