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.
Hi lizzy welcome to our family. I have raynauds,& osteoarthritis, with my lupus. When in a flair, the osteoarthritis is worsened. I fall down my joints get so inflamed. I'm sorry I can't help with robe other things. Yes definitely get a new doc. It is worth the money to find a good one.
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i cant help much.
i am male, andfrom australia.
but i am glad you are here.
the support i have been givern is incredible.
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I'm completely new to the world of being sick, so while many people on here know all about tests and what they mean...I, do not. I do know that the important thing for being tested for any autoimmune disease is a positive ANA, which you did have. What you probably want to look for is a Rheumatologist. I'm not sure if you're seeing one now, but Rheumatologists are specialists who deal with joint issues. And as such, they know a lot about (or should know a lot about), autoimmune diseases, since they're also called Connective Tissue Disorders, and many of them deal with joint pain and problems. Most likely you should check with them anyways, because you do have a bad knee, and like you said, possible arthritis.
With your chronic fatigue, it may be an idea to look into the possibility of fibromyalgia.
I know originally, when I was looking into diseases I may have, I skipped right over fibro, because I thought it meant just having random aches and pains. Which it does - but it also means in many cases, being extremely tired and dealing with chronic fatigue. So that may possibly be something to look into and ask about.
As for eye issues - dry eyes can cause eye pain, and Sjrogens does cause chronic dry eyes, so if you ever go back to an optometrist, have them check for dry eye. In the mean time, perhaps you could try to find over the counter eye drops, and see if those help any?
Honestly, if I were you, I would skip past a GP if possible, and go straight to the specialist (Rheumy). I'm also paying out of pocket with no insurance, and I know how hard it can be. Add on the fact that it's really hard to find a good doctor, and especially find a GP with knowledge and acceptance of autoimmune diseases... yeah, skip the middle guy. While having a GP is a good idea, maybe you can work backwards, get a specialist, and have them refer you to a GP they know is good, so they can deal with your overall health problems.
Anyway, these are all just suggestions, like I said. Remember to be an advocate for yourself - you have been in the past, but you're probably going to have to continue doing that. Do as much research as you can, and try your best to make sure you are taken seriously.
Good luck, and welcome to the WHL forums!
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