Join Date: Jun 2009
| | Hello. New and Very Scared. Doctor Just Called.
I had blood drawn a week ago. The Rheumatologist just called. her words were "I just got the results of your bloodwork. its not good. its nothing so serious that I need to see you immediately, but I definitely need to see you within the next two weeks."
Needless to say, I told her I wanted to see her immediately. I have an appointment 3 hours from now.
I dont know for sure all of the tests that were run, but I know some of them.. CRP, ESD and Lyme... I dont know if any were run having to do with APS or Sjogrens or anything like that.. all I know for sure is the bloodwork is "not good".
As for symptoms I have had over the years, and what brought me to a Rheumatologist, Opthamalogist and a Neurologist to begin with:
I have had Raynauds in my hands, feet and oddly enough, my tongue, for 11 years. When I wake up in the morning, my fingers are stiff and slightly swollen, but not painful. they loosen up during the day, but only a little.
I am always cold, especially at night. I often sleep with warm socks and a hat on my head. I am always "catching a chill", so I bring sweaters everywhere.
What prompted me to even see a Rheumatologist was i spoke to my GP about the Raynauds, and she decided to run an ANA on me, which came back at over 300. Since then, I have had a normal urine test, a normal chest x-ray and x-rays of my wrists ( because they hurt sometimes ) and again, normal wrists except for some mild arthritic changes.
I had the nail fold test, where the Rheumatologist puts oil on the nail bed / cuticle are of your fingers ( specifically the ring finger ) and looks for abnormalities in the blood vessels there. She said mine were "borderline", meaning that are some changes / distortions present. when I look just above the cuticles on my ring finger, I can see what looks like little tiny specks of blood.
My eyes are sensitive to bright lights and sunlight. if I am in the house all day, then walk outside and the ground is covered with snow, I will see a flash, and then get an occular migraine. If my computer screen is very bright or has glare, I get an occular migraine. Even on a day where the sun is not shining bright, just the whiteness of the sky will sometimes be too much for me, and I will have to wear sunglasses.
If I get a bruise on my calves, its takes forever to go away, like YEARS. ( if I bruise anywhere else on my body, it goes away in a normal amount of time, but if i bump my calves, the bruise lasts forever and ever, and the resulting bump can stay indefinitely. )
For the last year and a half, I have felt slightly dizzy / lightheaded. Nothing that would make me fall over, and not enough to make me nauseous, but just feeling a little bit "off" or "tippy".
Sometimes my arms feel weird: for a period of about a week and a half, I had muscle spasms? Pain? in my upper arms.. sort of like I had just had a tetanus shot, even though I hadnt. Also, the tops of my forearms felt weird, like tingly or "floaty".. hard to explain. ( of course, this could also be attributed to my weird neck.. I have whats called "Military" or "straight" neck.. there is no curve in my neck. it runs in my family... anyway, this causes problems w/ tingling & somewhat numbness in the arms anyway, especially at night, so for all I know, this is whats causing the weird feelings in my arms. )
I also have had 3 MRIS.. 2 of the brain, with and without contrast, and one of the spine, w/ & w/o contrast.
The spine was completely normal.
The brain showed 3 white lesions of "non specific" nature. I saw a neurologist for this. She said although the lesions "look just like" MS lesions, she doesnt think I have MS because I have no other criteria or symptoms that fit. The two brain MRIS were done 6 months apart, and there was no change in the lesions, and they never "Lit Up", which means they were not / are not active.
What prompted me to even have a brain MRI in the 1st place was because I had been having whats called "Binocular Diplopia" which is double vision that persists even when you cover either eye. This would happen when i was very tired, and after 8+ hours staring at a computer screen. The Opthamologist said I definitely DID NOT have Optic Neuritis, and diagnosed me with something called "exophoria" in my left eye. The muscle in that left eye is weak.
The Neuro said I may very well have been born with a weak muscle in that eye. She said that when people w/ MS have attacks of double vision, they last for days or longer, and it doesnt only happen when tired.
My double vision happens only when tired, and I can actually feel when its about to happen.. if i quickly close my eyes ( and rest them for a few minutes ) I can prevent the attack. Even if the double vision actually happens, if I close my eyes ( again, to rest them ) it goes away in about 10 minutes.
I have also had rosacea since approximately age 30. ( well, I always thought it was rosacea, and even saw a dermatologist about it; now I am thinking it was probably never rosacea, but more likely the lupus rash )
The only other weird symptom I have is Occular Migraines.. with the zig zag lines, flashes, etc..90% of the time, no headached follows. the 10% of the time I do get one, its very mild.
3 times in my life I can recall having episodes where all of the sudden, I got mega brain fog.. I knew what I wanted to say, but I couldnt make the words come out of my mouth. for about an hour, I also had confusion and weird thoughts, like I couldnt tell the difference between a conversation I had 10 minutes ago, or a dream I had the night before.. like "Did I just talk to Mary a few minutes ago, or did I dream about Mary last night? Did I stop at the store this morning, or I am remembering the time I stopped at that store when I was in 4th grade?" scary, right?
I dont know if that would be considered Lupus brain fog or not. I mentioned that to the Neuro and she said "that definitely sounds like a migraine".
I didnt know you could have a migraine that was that serious-- serious enough to cause that kind of confusion -- without having any pain, but I guess its possible.
Sorry if I am rambling, I am just scared...
So thats my story so far.. off to the Rheumatologist in 2 1/2 hrs....
Last edited by Conniel7777; 06-04-2009 at 09:10 AM.