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May 9, 2004
Bah, my post I had poofed due to cookies/login problem *laughs* This time saving it off to notepad just incase the forum times out or something on this posting haha.

So hi! I keep returning to this site by way of Google, when I search out various test results and questions about Lupus and the bloodwork. I figured since I'm reading so much, I might should say hi too :)

I'm still suffering, no diagnosis yet. My general practitioner put a complete stop to any chance of me ever getting a diagnosis from her or any of her fellow staff in that building. (Yeah, psychosomatic... whatever.)

I saw a new neurologist, he did some tests (That was a couple weeks ago) and the ANA is yet again 1:320. Five+ years now it's been that way! Except when I'm on prednisone for asthma related issues, then it goes down to 1:160. The prednisone makes me soooo much better, but the GP won't give it to me as regular! He was upset that they are saying I am faking it, when "there is smoke, there is fire!" (He said the ANA is the smoke, now we gotta find the fire) I hope he stays true to that, and doesn't decide I'm crazy when I go back in in 2 weeks ugh.

Neurologist was pretty mad over the fact I am refused prednisone to give me relief, but for now I'm staying off it while we go through bloodwork. I'll be seeing a new rheumatologist mid June too. I'm looking forward to a doctor visit for the first time ever *laughs* I hope they can help and won't tell me I'm healthy because I know I am not.

I have at least 6 on each of those lupus criterea lists, the one and then the one for St Thomas.. though I have only had the ANA test done before, not the other ones that go along with it. Oh wait that's wrong info really, I've had the sedrate test too but not consistently, which is almost always elevated but this last time (this month) it was normal. The only new medication I'm on that's unusual is Vicoden that the oncall doctor at the GP office prescribed when I called back after an emergency in-office visit due to unberable bone/join pain (and was of course, brushed off and told to just live with it.) That doctor was also mad that the GP is being such an idiot over all this. He even wrote down the old SLE diagnosis again for last month. So it is all very confusing.

I just had TSH, sjogrens ssa/ssb, cryoglobulines test done. All normal, which is good. Still depressing to be told "normal" again though. The dry eyes I have always attributed to allergies, and I guess I was right haha. Told the neuro that before he tested me and he said nope, we test anyway! So that was good to rule out at least!

Just had the electro part of the EMG done a couple days ago, all okay there. No carpel tunnel, though I didn't suspect that anyway but he wanted to be sure that wasn't the source of my odd arm pains. He spared me the sticking part of it whew. I am sure it had somethign to do with the fact I looked liek I was gonna throw up and faint all in one motion just from thinking about it.. ugh.. still makes me shiver to think about the test haha

My vision recently took a drastic dive downward. I'm now partially colorblidn all of a sudden, though I'm not sure just how to measure that... I know I failed pretty badly on the last half of the cards. Vision is horrible although my prescription did not need changed, blurry/double vision. I saw that post above too but now i forgot what it said it was. I am going to call my vision doctor (she's just really great, trying her best but keeps getting blocked by my GP when she tried to help!) and the neurologist too and leavea message. I just saw her (vision doctor) for the first time in January, and she's doing ongoing care.. well it's only May but still, she's being helpful at least. First doctor I've had who tells me flat out "Yes, you are sick. You are not crazy, you have an auto immune disease and it's probably Lupus!"

GP says I'm psychosomatic, and told the vision doctor (after waiting a full month to return the calls) that she was to encourage me that my vision was fine. It's not. GP refused to run the tests the vision doctor rquested. Sigh.

I didn't know why until I collected my records up from all the places to send off to the rheumatologist and neurologist. There's contradicting lines between vision/GP records. It reeks of wrong information in the GP records, and I had no idea she thought I was making it up/psychosomatic until about three weeks ago. She never once said a word about it.

In fact, in 2002 she even diagnosed me with SLE (I'm not sure what the basis for that was, while I was sick and had at least four of the criteria listed back then, the only other tests done wer basic blood work and ANA which was 1:320 then too). As I understand it now, there's other bloodwork to be done to be certain, so until that is done.. I don't know if I have lupus or what. I am much sicker now though, copared to 2 years ago. Big difference.

She gave me Plaquenil. It made me nasty sick. I toughed it out about two months and said forget it, it did improve the overall feeling.. hwoever living in the bathroom wasn't my idea of fun haha. I told her it made me too ill, and that is when in the records, the insults begin quite strongly. From then on, she scoffed/laughed/insulted everything I had to say about my health. Decided I no longer was sick, but instead was making everything up.

A question though, the hair loss. What kind of hair loss are we talking here? Big patches, just stray hairs, lots of stray hairs? I call it "shedding" *laughs* I have long hair, so it's really quite obvious when my hair lands in your food. It is so embarassing, I cannot help it. I be sitting at dinner and sadly, my hair mayland across the table in your food without me moving. I always assure people my hair is clean *laughs* I don't bother with hairspray so at least no harsh chemicals fall in your plate? That's always good, right? No one ever seems to agree haha. It is clean though sheesh. I don't have cooties!

I shed a lot. My hair is all over. The truck, the couch, the bed, the hall, the floors, the chairs, the bathroom, oh man.. the tub haha. My husband gets so irritated cause we have to pour draino type stuff all the time in the bath sink/tub. It clogs.. I can't help it dang it! It's not like I shed hair on purpose haha. But see, I don't know if this is normal (my husband assures me strongly that it is not hahaha) but I don't know what kind of "hair loss" Lupus brings on. I'm afraid to bring it up to ad octor for fear of being laughed at once more.

When we visit my husband's parents, his mom says she picks my hair out of the food but doesn't tell no one. I don't have to be in the room, my stray hairs get up and dive into the potato salad sigh. Then they pick my hairs off of everything in their house for months.. then we go back for another visit :) hahaha His daddy teases me that they don't need a pet when they've got me around to shed all up and down the place haha.

No patches of baldness, my scalp itches but no dandruff. Not really receeding but when it gets reeeallly bad, the part at my temples seems to be receeding a tiny bit but it always grows back, just fine hairs at first so when it first happened afew years ago I thought I was just making it up haha. Then it started to grow back, it didn't get reeceeded very far though whew. But I can tell it's getting bad gain, I wear my hair pinned up with hairsticks (to reduce the amount of shedding, but it seems to not help much haha) and my bangs seem to not cover quite so well as they used to. Yuck.

I laugh about it all as much as I can, not because I'm being a moron, but because otherwise I will just cry. The whole psychosomatic thing upsets me greatly, as well as all the false things in my GP's records. There are no clinical notes really, infact there are none for the bloodowrk they have ever done. The doctors I've faxed it off to have rquested it, but there are no such documents unfortunately. Just the lab's print out. Which is informative in itself, so I'm not sure exactly what a clinical note is. She insults me in the records if I was smiling or semi-cheerful at a visit, insults me if I'm sad/crying because of pain or out of sadness because I'm losing the ability to have a normal life more and more each week, insults me if I'm "bland" as she puts it, but she fails to note tha tI told her I was awake for several days due to pain and I'm exhausted. Instead decides no matter what emotion I am displaying, it is incorrect for the "situation she claims to be in". Whatever.

Hacks me off that she actually had the nerve to say that about every visit. Sheesh, apparently there is no emotion that is "appropriate" in her eyes. What a moron. So the GP can kiss Anna's fuzzy butt. Anna isn't my name, Anna is one of my rats (Eek! Yes a rat hehe! We have three rats.) My husband and I have no human children, so we have three rats instead hehe.

Well.. hi :) Hadn't meant to write so much.. hahaha


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