Years Searching, Getting Close, need help filling in the blanks...
Hi All, I have had problems for about 10 years, and have actively been seeking anawers. I have been written off by most all doctors because they like to put women and fatigue in one lump diagnosis - depression. I am in no way fearfull of what I might/might not have, but am just sick and tired of not knowing how to treat or how to proceed. It is up to me. I have read so much here and on the net that my eyes are crossed, and my head is pounding.
I am going to post my test results below, and maybe someone can tell me what I am missing so I can go to a specialist and make sure they don't miss anything. I am self pay, so every visit counts, and I think I am getting close!!!!!
Long story short, I have had severe fatigue for about 10 years, more in the last 5, and about 3 years ago, i noticed my rings didn't fit. (don't wear often). I was skinny then so, they should have been falling off me. I blew it off as being bloated. 4 years later, rings still don't fit, puffy hands, and now pain.
I know I have Raynauds. I have had it since I was about 19 and so does my mother.
I know I am chronicly fatigued, mostly by noon or 2 on...
I know I have advanced arthritis in my knee, and had major surgery on it about 7 years ago. YET, no one had tested me for anything but a basic CBC. I have spent most of the last 10 years being fairly non productive. I use to tour the world and sing for a living. It is just me, no hubby no support, so I don't date, since it is hard to explain why I am tired, or why I don't want to go out past 8pm. I am 43. Quite often, when I do meet friends, they seem to want to do more than I can handle, or the day they want to do something I don't feel well, So I make up excuses. They are not good enough friends to tell them I don't feel well (it gets old!), but at the same time, I basically have no close friends since I am single, and tired all the time, and work now from home on the computer. I do love to get to the river with my dog, when I get home, I am out!
ODD Symptoms I have had: Starting about 4 years ago, there would be times, I couldn't walk, my bad knee would just go bye bye, weak. I had to walk with a cane for a few days or a week. It came and went over a 4 month period. In the last few years, my eyes, under (where you would have "bags), will get a rash, like scales, it might have been on the side of my nose a little, dry, flaky, and my eye lids will be puffy (like when you cry for an hour :-) I haven't done that in years LOL. I tried cream, eczema creams over the counter, and nothing worked. I also had a chalazion (when an oil gland in the eyelid becomes blocked), which was removed. Saw Doc and she said I had a laceration in my eye, but I think I did that from rubbing my eyes when they were soar. My eyes are currently on and off very achy. It is not seasonal and I don't tend to have allergies. I wonder if it is the computer, but even when I close my eyes (now) they are painful. Had a good eye exam, and nothing, but we didn't do the tear/dry eye test.
I entered a clinical trial for depression (free tests yeah) and the test drug was infliximab/remicade (anti inflammation).
I am almost sure I was on the actual drug. I noticed my rings fit when on it! WOW. And I actually felt "normal". I know infliximab isn't used yet in lupus, but is for arthritis and inflamation.
SO, I went to a new doctor a few weeks ago due to chronic UTI's and as he was trying to get rid of me, I asked him to run a Rheumatoid test and gluten. I am paying out of pocket, so why not.
My Test results from the study a few years showed: (no reference range are noted)
Anti DNA 6 IU/mL
CRP High Sensitivity 1.74
Anti Histone: 0.9 units
During one of my visits, I had:
Low: Total Protein, Albumin and Calcium levels.
New Tests from a few weeks ago which I have not discussed with any doc yet and am not going back to the GP who I had ordered them:
ANA, IFA Screen: Positive (negative) A
SED Rate: 2 (< or = 20 mm/h)
Rheumatoid Factor = 6 (< 14 IU/mL)
Gluten (F79) IGE <0.35
Last but not least: ANA TITER: 1:80 Homogeneous.
I am only hoping someone can fill in the blanks, or confirm any of my symptoms as similar as yours. I plan on going back to a different GP with these test results and getting more lab work done, but what should I ask for if they blow me off. I want to be as complete as possible. Then If I need to, I will go to a specialist. I think I can get some of this lab work done at a discount from one of my doctors.
Oh, and I am not going back to the last doc since he wouldn't even copy the lab work I brought with me, or look at it, and he didn't even take a medical history! NO forms of past stuff etc. VERY weird. I told him, i believed it was all connected, and he said, lets just work with one thing at time when I told him my hand was hurting and I couldn't even hold the coffee pot. GEEZ, who needs coffee. HA HAHA
Well, thanks everyone. I look forward to hearing from anyone!!! Let me know what ya think... And, I am now 43 years old.