View Full Version : Anxiously waiting for blood work and new member!

11-27-2011, 05:50 PM
Hi everyone!

What a fantastic site. I stumbled across you guys last night and decided I might join, even though I am in the early stages of trying to find out what is wrong with me. i have a history of over 8 years going to the doctor with similar symptoms and finally my doc has decided that its time to get to the bottom of it, or at least try! i have been tested before for thyroid issues, I have had MRI due to pain in my face, countless blood tests, food intolerance suggestions, but nothing ever conclusive and the docs kind of just say I don't know.

I went to this particular doctor in February of this years with the following symptoms

excruciating ankles, knees finger joints and wrists.
Horrible fatigue
General feel onf unwell
Random aches in my muscles
night hot flushed/pounding heart/nausea
Disturbed vision - like my eyes aren't looking at the same thing at the same time
Clumsiness and lack of concentration

Doc did basic bloods and only thing that came back was a borderlin RF of 14.

Since then I have had more episodes or flares of these periods. The same things |I have been having for years. I seen to get them after a virus or intense times, like a few months after having a baby, running a half marathon, or last sunday doing a short triathlon in the sun. A big night out with friends. or just busy periods like a big holiday or christmas.

Since reading this forum I have a lot of light bulbs going on.

Last week I was sitting on the toilet and I starting yelling for my DH as my thumbnail and the tip of my thumb was blue. It was so freaky. Now I read about Raynauds Phenomenon. I have always had these weird little scaly sores from time to time in my hair, at the back. and Along my hair line near my temples. Are these lesions? i thought they were pimpls that just wouldn't heal but they never popped.

i am now wondering if other things are to do with this. Things I never talk about as you get sick of the sound of you own voice complaining and talking about the things that are wrong with you. If noone minds, I am going to put a list on here of things that I have been goign through and experience on a regular basis. As I know a diagnosis can take quite some time, it would be nice knowing I am not going insane :(

excruciating ankles, knees finger joints and wrists.
Horrible fatigue
General feel onf unwell
Random aches in my muscles
night hot flushed/pounding heart/nausea
Disturbed vision - like my eyes aren't looking at the same thing at the same time
Clumsiness and lack of concentration
Blue thumb
Tingling and itching really badly on legs with white splotchy rash after showering extreme heat
Tummy upset - bloating, runny poo, constipation, stomache pain, gassy feeling in tummy, nausea
pain under the left side of my ribs
pain in my chest and in my back
extreme eye sensitivity to sunlight. I cannot even open my eyes
I don't get sores but I get very tired and I get really red really quick on the exposed skin in sunlight. it is usually gone after I cool down but its really red!
Extremly dry tongue, throat and nsal cavity at times, itchy eyes
Pain and pressure behind my nose and cheekbones, ears blocking and popping, weird sensation of a wave over my face and sound goes far away. Hard to explain.
Swollen lymph nodes and glands in throat and neck
Tingling in fingers and feet
Muscle twithces, usually in my upper arms
brain fog while driving
sometimes I can't gets words out.
When I drive on sunny days I have to fight myself to stay awake. the fatigue is all consuming

these things can happen all the time, all at once, one at a time etc. You know the drill. Is this all par for the course.

I am desperately upset at the moment as I am quite fit and I just keep getting these issues after activity. If I have to stop running I am goign to be devastated. Although at the moment I can't run anyway as my knees and feet are so sore and stiff.

11-27-2011, 07:17 PM
Wow - your symptoms sound EXACTLY like mine over the last 8 or so years (worst in the last 3-4), with the exception of the finger - on me, it's my left middle toe that turns purple and gets gross and painful (Yes, it's Raynaud's) - and I get migraines occasionally (same things trigger the Lupus and the headaches, interestingly enough...). Oh - and I have a history of UTI's (reeeeealy fun....NOT!!!!!)

I finally saw a great Rheum this fall, and he did tons of blood work, ultrasound of painful joints, head and neck MRI, urinalysis, back x-ray (oh yeah - I also have had S-I joint/hip issues, which are often A-I-related). None of the symptoms have been bad enough to land me in the hospital (thank goodness!!!!), but it can all be pretty debilitating at times. In a flare, the fatigue is bordering on narcolepsy and the brain fog is so bad I thought I had Alzheimer's at one point. Scary. Oh - and I had a "vascular event" (teensy stroke) in my left eye that affected my vision - mostly healed now, thank goodness.

Anyway - the final diagnosis was Lupus, Sjogren's (which can cause mouth, nose, eye, and "other" dryness...a-hem...), and Raynaud's.(I also have Antiphosphilipid Antibody Syndrome, but I knew that from blood tests 20 years ago...long story). I am on Plaquenil for the last 3-4 months with no problems except maybe a little nausea a couple days when I didn't take it with enough food - and it seems like maybe it is helping a little (?)...too soon to really tell.

It seems to help a LOT to stay off wheat, even though none of the tests show an allergy or Celiac. The tests are not perfect.

I take a bunch of supplements that seem to help, especially with migraines and joint pain. Some are on the advice of my doctors, some are just ones that I researched and tried out. I REALLY don't like to take medications, so I am trying the "natural route" as much as I can. I am taking the Plaquenil because it has a long history of proven effectiveness and relative safety, and because it can sometimes at east stop (or slow) the PROGRESSION of A-I disorders, if not actually send them into remission. I look at it as my "insurance policy" to try and keep all this stuff on the mild end instead of having it develop into more organ involvement, etc. Or at least that's what me and my Rheum are hoping.

It also gives me maybe a LITTLE bit more freedom in my lifestyle - we travel frequently to see family (which always sends me into a flare), and I work outdoors, in the sun, year-round - though we live pretty far north where the sun generally isn't too severe, even in the summer. Plus, y'know, sometimes a girl just needs a nice glass of Cabernet. ;)

I hope your issues get resolved quickly and to your satisfaction. It was really important that I sat down and typed up a COMPLETE medical history (as well as I could remember it) for my Rheum...even if you print out what you wrote here and brought it in, it would help enormously. If you can add specifics ad dates (as near as you can remember them), it will help, too. A diagnosis is not the Holy Grail - but it will help you know how to proceed if the evidence DOES point to A-I disorders - and it's really important to know. I've heard of hardly ANYBODY who didn't have to be pretty persistent and be their own advocate to get good healthcare.

My blood tests were all sort of borderline - (except the APS which is "yes" or "no", and the Sjogren's, which was pretty much off the carts, sadly...) - but my history of symptoms and the ultrasounds confirmed A-I problems, so - close monitoring and Plaquenil to hopefully keep things on the mild side. And of course if (God forbid) I go into the hospital for ANYTHING, it's really important that they know these dianoses, because they impact any other medical decisions (don't want to turn into an episode of "House", L O L....).

Anyway - we're all unique, of course...that's part of the mystery of this stuff. I just wanted to respond because your case sound so similar to mine, and I wanted to let you know my experience in case it helps. Best of luck to you...and don't panic...it's an ongoing journey, and a diagnosis is a double-edged sword..."grief and relief" I call it... :p

11-27-2011, 08:00 PM
Thanks for the post Sleepy in Seattle. Your post triggered even more for me also which has made me think again. I had what Ii was told was a migraine from a doc at the Melb Ear and Eye Hospital in about may 2008. I felt this intense pressure and pain in the left side of my face and temple, then it went all numb and the left side of the vision of my left eye went dark and like it have vaseline on it or something. While it was happenign I had this intense pain under the left side of my scull. t was horrible. I had a bit of a head ache, but no nasuea or light sensitivity like a migraine. It freaked me out big time. i had the vision issue all the next day and went to a doc who sent me to the hospital. The hosp specialist told me he thought it must be a migraine. But he wasn't too sure, I think he couldn't find anythign else, but really all he did was dialte my pupils and look in there and pressure test my eyes. Sometime now if I get over tired or over exert myself the vision disturbance comes back. maybe it has something to do with this ongoing issue rather than a normal migraine? is it too late to find out?

I agree with you. i don't want to have lupus or HAIT or any other AI but I guess I would rather have something than nothing and what does nothing make me?? Crazy ? :) We shall see tomorrow hopefully when my boods come back so we can decide where to go from there.

Cass :)

11-27-2011, 08:11 PM
hi cass, and welcome.

there is quite a few of us aussies on here. so you are definetally not alone.

reading your post, it does sound like you have some auto immune issues.
please remember that we are not doctors, but we can speak about our experiences.

there is actually 63 auto immune disorders, we have a very informative thread about them.

somethiong many of us have found helpful.......
is to write down a list of your symptoms, and to keep a pain diary.
also write your questions down, before you go to each doctors visit.

i hope you hang around, and find a few new friends amoungst us.

11-27-2011, 08:13 PM
thanks Steve,

i will definately hang around as I think there is def somethign there. i have too many things going on for it to be in my head :(

11-27-2011, 10:08 PM
Hi Cass & Sleepy,
Welcome to WHL.
I'm familiar with a lot of those symptoms, too. My dx was Mixed Connective Tissue Disease - a mixture of Lupus, Sjogren's, RA and Psoriasis.
I've found that AI issues can cause a lot of weird and annoying symptoms.
I'm glad you've found us and I hope that you keep coming back.

11-28-2011, 03:12 PM
hi cass welcome to whl i have a lot of the same symptoms so i know how you feel i know it is frustrating and scary at times . i to am from sydney if you need to talk at anytime you can private message me. take care

11-28-2011, 06:12 PM
Thanks for the welcomes everyone.

I have just called the docs surgery. All my results are back but my doc was not able to talk to me. Hopefully she will call me back soon :( I am so nervous now. I actually feel a bit ill from it. I know these results are just markers and indicators of possible problems, but I am just so scared :(

Hope everyone is having a decent day