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My name is Matt I'm a 32 year old male and I've thought that lupus could explain my issues.
About 8 years ago I started having mass amounts of blood in the water after a bowel movement. This led to a G.I. and Colonoscopy with no results. Still this occurs at least once a year. It's not blood in stool but just like I cut myself and bled over the water.
About 5 years ago my right arm starting hurt and I went to P.T. and fixed it. The pain was in the muscle but it went away with P.T.

About 3 years ago I started having pain in my thighs. It quickly became extremely bad and I had to start using a cane. The pain was worse in my left leg but was still bad in my right also. One Dr. thought I had Bursitis and we went through everything including removing the entire bursae in surgery.
About a year and a half into this pain it migrated to my shoulders. Again worse on the left but both hurt extremely bad.
I've gone through many doctors now and about a year ago I read about Lupus and it's effect on muscles. I thought that this may explain all the odd things that have gone on. I have what looks like sunburn over my nose but it's not raised at all and with my complexion is not that bright.

My Dr. has done every blood test in the book and at one time informed me that with blood like mine i'd never die. CPK was normal. Autoimmune was normal. Everything they've run has been normal.
I guess I'm looking to you all as you may be able to guide me a little.
Nobody want's to have Lupus but 3 years in to this and I'm on 4 types of pain meds a day I want a label to at least say... that's it.

I have a 2 year old little girl and it just kills me to not be able to play with her the way I want.
I'd hoped in posting this to gain some knowledge to pass to my Dr. or to be able to say Lupus just doesn't fit and I need to keep going.

I wish you all well and thank you for reading this.
 

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Hi Matt and welcome to the boards.

Your story of pain that comes and goes, things get better, then worse and back to good again and through all of this normal blood work........this is a very common story amongst a lot of us.

I was first diagnosed with Chronic Fatigue syndrome, then Fibromyalgia, then onto a stroke but that was short lived as we moved onto Multiple Sclerosis and that diagnosis stayed for 3+ years and then FINALLY MY BLOOD WORK STARTED TO SHOW ABNORMAL ANTIBODIES!!!

I did not feel well for years and yet my blood work was normal, always normal. You know your body best and if your not feeling well then keep pressing forward until you get some answers. Is your doctor willing to treat you based on symptoms alone since your blood work is ok? If not I would suggest looking around to find a Lupus specialist, probably a Rheumatologist that is willing to look at the entire picture and not just blood work.

I wish you well and keep a daily journel of symptoms along with taking pictures of any swelling or rashes that may crop up. This is good to have moving forward. Let us know how you get along. By the way when I first joined this board I am pretty sure I did not yet have the diagnosis of Lupus and yet the more I read the more convinced I was that in fact this is what I was dealing with. Follow your gut instinct!!!:wink2::wink2::wink2:
 

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Matt:

I am sorry you are suffering so. I am serum negative lupus - so you are not alone. If your insurance allows I would see a rhumatologist who specializes in autoimmune disorders...many times they can DX based on symptoms, or at least start treatment to see if it helps.

Plaquenil is a usual first line of defense for lupus and bears almost no side effects.

Also my butterfly rash is a blush, not raised too often but is on my face (cheeks nose and between the eyes) as well as on my chest.

If any of us here can be of help...please just ask

Welcome to the site - Stephanie
 

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Hi, I am sorry that you are suffering. Trying to get a diagnosis can be extremely frustrating and exhausting. You just need to see the right doc who can put the pieces of the puzzle together. Have you ever been given steroids? Sometimes a doc will try a short course to see if it helps. Keep a symptom diary noting what makes things worse. Maybe you could ask for a rheumy recomendation in your area? I hope you get some answers soon.

Deb
 

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Hi Matt welcome to the lupus site.

Here is one of the reasons why people don't get diagnosed right away.

Lupus is a difficult disease to diagnose, & can be overlooked, often for years, unless the GP or consultant is alert to it's possibilities.
I found it on our main page of this web site.

http://www.uklupus.co.uk/dxlupus.html

There is a lot more info there that you can read.

Do you have copies of your lab reports or doctor notes? You can get them, all you do is say you want them for your own personnel records. That way you can see what tests were run and what were not. If you would go to another doctor for a second opinion you would have those tests if your records were not forwarded for you.

I have a 23 month old grand daughter. She is a lot of fun and has lots of energy.:hehe:

Take care and post any questions you might have.
Lyn
 
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