Join Date: Oct 2011
Location: orlando, florida
The hellish Autoimmune Odyssey
I was on this board a year ago under another login, I can't get my old password so I started a new one.
I'm 42 now. I started off by getting a lot of chest infections, colds I could not kick, one very serious. I had steriod shots, antibiotics and then things turned ugly - major neurological problems, blurry vision in one eye, strange visual changes (good sometimes, not the next, a focus problem it seems). I had twitches and jerking all over my body. My mood depressed, I started suffering from health anxiety, I had pain under the left rib. Over the last two years, I've had an ultrasound (nothing found), I had lots of bloodwork (nothing found), I had a CT Lung Scan (former long-time smoker. Nothing found). I mainly have my pain and nerve pain on the left side of my body. I have strange chages in pressure in my sinus cavity (stuffy nose, then none).
I have weird issues breathing, like it's hard to take a deep breath, yet I am not out of breath when I'm working hard. I have left arm nerve pain that makes my ring and little finger tingling. I have epigastric pain and now terrible boating after I eat. I get dizzy spells and light headed. I don't feel right.
I am not tired but I'm beat. Today my arm muscles were really sores. I feel ike I get back cramps or that I'm just so stiff sometimes, and I don't sleep well, hardly ever actually, and I do not hit REM often. I get chest tightness but it goes away, pain around the shoulder (muscle soreness). The list goes on. I also suffer from migraines.
I'm about to hit all the blood tests again. They did find a monoclonial protien on a test last year, freaked me out and they redid the test - it was a lab error.
I don't now if this is some autoimmune issues, the MS was largely ruled out, though my mother has it, so now I'm back to seeing if there's something growing somewhere that it should not be, putting pressure on my blood vessels, or if this is an autoimmnue problem.
The problem with all this is, like most of know, the time it takes to get an answer. I don't know if I'll ever have one. I can't stand the stomach pain these days so I stopped eating as much as possible. Food scares me. I try to eat small meals, light stuff, bland stuff.
I hurt all over all the time and while this might be Fibro, the rule out is the hardest part.
I'm slated for colonscopy and upper GI Nov. 17. I am due in for bloodwork for my neurologist. I saw a rheumatoid doc once but wanted to rule out the big stuff fist so I think I might go back to him in the meantime.
I was on neurotin for a long time, I stopped taking it. I might take it again.
Whatever this is, it's taking me apart day-by-day. Not knowing is the worst part of all. I imagine the worst, probably normal human reaction. I have a young child with special needs and the urgency for me to be well is high.
My husband is suffering from very similar GI issues, pain down his arms, he can't even lift his arms most times due to the joint paint. I am pretty sure we are not eating lead paint but perhaps there's some link between what he has, and what I have, though my issues predate his by a year.
I'm at the point of such anxiety over this that I can't even fuction well. I am so foggy and spaced out all the time. We have two sick people in my house and a very active kid with a lot of issues. I am forced to be up on my feet, smiling and acting like I'm fine for her sake. I actually thought about her sending her to her sister's house until I can figure this out, but I know I can't do that either.
What do I do next, ask for a full body PEP Scan? Will they do that for you on request?
I am returning for the GI work, then to the neurologist, then back to the rheumatoid doc. What's left? Where else do I turn if they can't find a reason for this?
I have bad C-Spine issues and have taken three epidural steroid shots. The first worked three days, the second worked 7 days, the last one worked a few weeks but kicked up god-awful stomach pain. So, that's a total dead end for me. I am not sure I should be messing around with my immune system anyway.
I also get weird bruise-like feelings on my body, it's random, no bruises exist.
Hell, I'm so confused that I can't think of what I should do next. I eat Vicodin 7.5 split into two one-and-a-half times a day. I take Xanax, which really helps with the pain and calms my anxiety. But I hate taking things that mask pain because how would I know if I was getting better or worse? I'd say the problems are really uncomfortable now and seem to move from one system to the next inside my body.
I think I am preaching to the choir here, many of us are in the same boat.
I wonder if I can get a full-body PEP Scan? That would be weird to ask for, no?