[-jimi-]

Not a good day for it, I feel crappy as heck. Sure, he might see I'm not all friendly smiles then, and actually think I am ill, but just the effort of going in and it's way away too. Bleech.

The other things about feeling this crummy is that I have no real idea what my complaints are, my mind is a little foggy. But I think I want to know how I did on my blood tests plus tell him the levels of fatigue and out of shapeness I have these days. That is all. Can't forget. I think.

Since this is my yearly checkup I sort of don't want to screw it up. My doc wants me back on a med that totally messed my tummy up (it didn't according to him) and I wasn't on it long enough (although the old doc thought so and the med helped zero), plus they never gave me the eye test with it, which is mandatory, and my vision has been bad since. But thats just one of those "Oh it's only in you head" thing. If he suggests the med again I'm gonna scream. Although. the way I feel, it'll be a week scream.

I have to catch a bus home after that. I hope I don't puke or try to pass out.

[-jimi-]

That was an odd visit.

Doc I guess listened as well as he wanted. Treats you a bit like a machine. He didn't suggest the same med again.

Fortunately and unfortunately my labs were about the same as last year. No new organ damage (a little low on kidney but stable and nothing alarming), but also no worsening of low iron... rather a little better. Too bad since that is fixable.

Since now there are only followups, my GP will do all that now. Oh well. Or just as well.

My last rheumy said I do indeed have Lupus and Sjogrens, I have a lot of the symptoms, I am feeling really crappy all the time and I have the labs and antibodies for it. This rheumy said I do have the antibodies, and I'm ill. But he took the diagnoses away. Because.... he cannot test the Sjogrens and he thinks I don't have enough organ damage for Lupus.

I don't know what to think.

It shouldn't matter, since if I get worse there is treatment, and then I would be rediagnosed. But it ticks me off that I now have NOTHING according to him. It sure doesn't feel like nothing when you cannot even climb the stairs to the second floor without gasping for air. He understands I'm ill, but not with "anything".

The only thing he could say for certain is I have BP. I sort of woke up from my mildness and said WHAT? Then I had to set him straight that I've never been diagnosed BP and my mental diagnoses are different. I have no idea where that stuff came from.

So I'm sicker with this than last check. Yet I lost the two of my diagnoses. I forgot to ask if this gets me out of the risk group. I certainly hopes not. I depend a lot on this, if nothing else for the free flu shot. Around here, those are restricted and not everyone can get them. If I get flu I end up semi-dead in hospital because this what is now undiagnosed wrecked my immune system.

Anyway I made it home. And in a way it feels good he won't be my doctor anymore.

[shezbut]

Sorry that your doc visit was so frustrating

Have you battled with chronic urticaria (hives) or angioedema? Not an uncommon symptom of Lupus or Sjogrens, which can be miserable. (I'm just curious, I've had CU a couple of times, without finding reason or treatment.)

[-jimi-]

I had urticaria a lot when I was a kid and teen. I mostly was OK, but working up any sweat I broke out at once. After gym class I always looked really weird, was red or spotty all around. I grew out of it and it was before the onset of "Lupus", that came when I was 26, after a major flu. I don't think I have angioedema.

My symptoms are; Dry eyes (I can't cry with tears because I don't have that much tear fluid) that caused badly scratched up eyes (my eye doc was horrified....), dry mouth, probably a little more saliva than the average Sjogrens sufferer, still I cannot eat dry food without a drink, then I would choke. My airways are very weird, started as a dry cough, but now it is like I naturally cannot rid of any phlegm or irritants so instead when it built up, I have really bad coughing spells where I cough up mucus and I get those maybe 10-20 a day and I almost daily cough until I vomit from pure irritation. My esophagus is constantly irritated with heartburn like pain and sometimes spasms while eating. On and off my salivary glands used to swell and I looked like a hamster, but that hasn't come lately.

I have the labs for Sjogrens (but too much saliva for the diagnosis), RH+, ANA+ (speckled), SSA+ and SSB+. Thing is I didn't develop any dryness until 2002, and my illness started in 1995. Which would put the traits of Sjogrens as a secondary issue.

Further I'm extremely exhaustable. I have chronic fatigue also. If I overdo it, I just crash, once I was in bed a week after effort (that time with fever and flu like symptoms but mostly it is just severe fatigue). It is probably the fatigue and lack of stamina that is the worst. Everything is so hard to do. And no matter if I push myself, I cannot build stamina.

I have hypothyroid, that is treated.

I stay out of the sun because it made me look like I was boiling. Else I'm very heat sensitive. Sun used to be able to put me into a fever mode, but not anymore, maybe it disappeared or maybe I'm much more careful.

I used to have sudden stabbing pains all over, mostly from soft tissue, it used to come and go, but I don't really have that anymore.

I have some joint pains but no swelling, I don't have a lot of joint pain but when I do it really hurts, oddly mostly in my toe joints. I also had adhesive capsulitis of my shoulder, came and went for years and finally my shoulder wouldn't thaw anymore, so I got mad at it and ripped the adhesion apart with brute force. I do that now if I feel it tries to freeze up again. I had a tad of cold, numb hands, but gotten better. I have weakness of my arms and hands that come and go. Sometimes my arms just hurt really bad from any effort and I can't hold things for long at all. Or in rare cases, my hands got so weak i could barely hold anything, and hands and arms would go numb (quite scary).

I have myoclonic jerks that came and stayed for maybe two years, almost totally gone. Breathing deeply doesn't come easy to me. Sometimes I have chest pain (severe stabbing feeling) but I'm cleared from any heart involvement.

I develop deficiencies like B12, B9 and iron despite getting a lot through food. I get all infections other people have, never fails. Usually flus and colds. Last flu I developed pneumonia and second last flu made me have 10 days of extremely high fever (had to finally go to hosp). I used to have maybe 5-7 infections a year but that decreased radically after I started the flu shot (Don't ask me how a flu shot can make me not have colds, that shouldn't happen). I also develop fever blisters on my hands. I even had H-flu once.

I don't have a malar rash, and I don't have swollen joints. I also have a negative ds-DNA. I have a decreased kidney function but not to any point where it bothers me. I used to have hair loss but it basically grew back although never to the thickness it was prior.

Since I developed thyroid stuff, I no longer have much fevers, even if thyroid is treated. I have a very low body temp instead. So I guess that "cured" the mild fevers I had not as part of an infection...

I understand if I don't have textbook Lupus, and I understand I have a little too much saliva for Sjogrens, but go from being diagnosed to a doc saying I have NOTHING.... I don't know... it just doesn't sound right to me.

I should be satisfied the GP will test for things, continue monitoring my very high ESR (which I guess I should just live with), liver and kidney functions (that could go bad i guess) so I just don't keel over and die one day. But I can't but feel frustrated. Not only do I have to live with this. I also have no name for it, it is "nothing", "basically asymptomatic" (doc's word). It's basically telling me I made it up, right?

My last doc that said I DID have Lupus and Sjogren's, just her saying that made it easier because then I was GOOD doing so well DESPITE having it. Now... I'm a bad person for doing BAD despite having NOTHING.

/end whine