Ok, so half a doz posts later I have some time off work and can finally bore all with 'my story'
I had my dx of sjs a year and a demi ago. It was my eyes (typical) which betrayed me that time. Over many months 'something' was 'going on' (hahah) Finally, the dryness had worked its magic and I tore a chunk of my cornea off when I first opened my eyes one morning. Back to the eye specialist, a dx, and many months of contact lens 'bandages', eye drops (for pain, for dryness) and etc...
Now, the dry mouth thing popped its ugly head just a little later. I could not understand why my mouth was so dry and so so so salty? Then the fun bits. I could (and still can) literally wipe the inside of my cheek and flic huge wads of sloughing skin out. Not small bits but 6,7, 10 cms long (... potential circus act u say? ;O )
Anyhow, then all the strange sweating at base of neck, huge amounts of water I drank at dinner, yada yada started to make more sense... for the sjs....
Now the eye specialist mentioned this Plaq stuff; so a little research quickly got me to its side effects... retina damage? Pass....
U c, ctd's and me have travelled together a long time. When we get along, we can inhabit this physical space of my being, and life's not too bad. Other times it wants to be boss, like some stupid spoiled child that knows it's being bad and will continue to make a rukus until it gets what it wants, and frequently doesn't have a clue as to what it wants, but making noise just seems appealing...
In my family, Raynaud's was situation normal. so what of it...? For me, sun exposure typically produced lesions, still does (and can cause odd blisters, even on my eyes, but that's a topic for later on hehe....) the same for some other family members. so what of it...? situation normal... I remember I was very very young maybe 4, still b4 school, mentioning to my grandma something was wrong with my eyes. "Do you want to see a doctor?" I recall she asked. "No." I said. I mean, what 4 year old does....
One of the big red flags when I was still a young boy was contracting measles. Fine. It happens. U get better, now you're immune, move on. Until u get same measles again next summer. Hunh? Later, u get tonsils removed (nothing special, right?) But in my early thirties, during a big ill, ENT notes a remarkable finding of 'enlarged adenoids' ... why is this 'remarkable' ? (it took me a long time to ask that question and finally find answer, which brings me smack dab into the middle of immunology and that's a story for later too ;)
Anyway, Im going to skip to university days, where sx forced me to visit local teaching hospital. They take history, poke prod and palpate, think MS. Tell me to "go out and make sure you have some fun...." Hunh?
So what I did was whenever something odd happened I'd ask someone "Hey do u get..." and many times I'd get a "Ya, or something like..." or a curious look of incredulity. But I'd always ask a different symptom of different people, possibly reducing the chance of someone noticing that something was going on early on... would it have mattered? Eventually like so many I just wrote it all off as 'I must be aging badly' that is, until my early thirties came along....
Skip ahead another 10 years to a beach one day with friends (and believe me, during this time there have been many visits to ER with little help forthcoming, just bemused looks or the most inane opinions; except this one GP in Toronto who knew his stuff and warned me what to watch out for... ah, there is intelligent life after med school after all...). Brutal hot summer sun, beautiful lake, everyone happy and glad to be alive etc and the music on the radio said so.... One of the girls turns to me and notes the malar rash on my face. "You've got lupus," she said, pointing. "That rash? Oh, I get that every summer," and quickly forgot the conversation, (I can't explain why, eons later I suddenly remember the conversation is actually the first time I heard the word lupus.... lou who?)
I'm going to cease the 'my story' part because seriously, this could go on forever. What I'd prefer to state are some of the things I know or believe to know to be true about the medical world, then finish with my laughable hit list:
There is something very wrong with the way doctors are trained to have so many patients (and world wide!) being missed, tut-tutted or blown off as psyche cases. The stench of arrogant paternalism (as it seems to originate from men) masking their lack of knowledge comes to mind....
Most physicians shouldn't be as monetary reward and patient care are mutually exclusive ends results.
I'd rather be treated by a female doctor in most instances. (Altho I did have a female rheumy state that plus five splinter hemoraghes was abnormal. I had over forty when she told me this. She didn't even look, and I was too ill to come up with the idea that maybe she should...)
A good listening doctor should be quietly seduced from their spouse and family, and then promptly married.
A good nurse trumps an inadequate doctor. Two good nurses and a bottle of wine and I no longer have any health issues...
Most doctors cease opening books once they graduate, save those dealing with real estate and investing.
ERs deal with triage and the likes, and therefore it is advisable to stick a knife or similar sharp object into the area you are concerned with, thereby increasing one's chances of actually being treated...; I was once told by ER staff 'don't bring your chronic disease to ER." Later, my optic nerve was permanently damaged, a blood coagulation disorder was left untreated and I suffered two strokes. Needless to say, it takes a lot to get me to go to an emerge these days...
Your specialist referral will only be as good as the content of the note that got you into that office. SO BEWARE! Doctors use codes 'this gentleman' will get a different response than 'this person'.... caveat emptor....
I don't know how many times I've come across diagnosis or findings buried in the paper work NOT passed along to me. Is this simply one person thinking the other person should pass this info along and nothing gets back to the patient? I've discovered an amazing array of buried abnormal findings by simply going back and asking for copies of med records, stunning findings sometimes...
Anyone reporting to an ER with a common cold should be publicly flogged. And then left to remove bedpans in the rooms of swine flu victims.
I have decided that I would only use prednisone (or any of its family) in life threatening situations. I have used it three times, very high doses, and probably should've another two times.
I find it interesting that in studies involving Plaquenil and SLE patients, lupus patients do not get as many flu's etc. However, I remain unconvinced of Plaq having any proven or objective long term ability to stop disease progression to organs. The claim is it 'slows' disease progression to organ involvement, which seems a dubious claim indeed, as to who exactly will eventually have organ involvement, what are the criteria of this determination? Did they HLA type all patients in all studies? Did they biopsy all organs for baseline b4 treatment commenced? What of patient non-commitment? What defines organ 'involvement' per study?
And if I seem a little harsh on the med community, I will acknowledge that there are some very fine physicians. The problem is one of consistency. The good get tripped up because of the clowns. But they all are legally responsible until a judge decides otherwise (which is why some issue very vague findings...)
It is 100% mistake to 'wait until I feel better' to go in an see your doctor. LET THEM SEE YOU AT YOUR WORSE! They are doctors and therefore need too see you at your worst. Help them, they are doctors, seeing is believing... etc
Do not tell a doctor you have x y and zee disease. Big turn off. If he can't use algebraic logic after you honestly give your symptoms and get the presumptive dx in the general ball park, then you have just wasted a day. Better a wasted day, than a wasted life, non?
Enuff. SLE, CREST, SjS, systemic vasculitis, Raynaud's, osteonecrosis, blah blahh and blahhh (btw, lately it's been tossed about that ON is actually an autoimmune sob, they find it very interesting that even 10 years after last pred dose SLE patients still get nailed by ON (c'est moi). Something else is going on 'oh-ah' ...
It's a curse but at least it's my curse.... hehe
Wow stillsguy,
That is an amazing journey through the medical minefield, oh I mean community that you've been through! And you also have a good point about doctors that tend to close their medical books at graduation and never open them again.
I've only had one really awful doctor, a lot of mediocre ones, and a few okays, but no really good ones so far; I'm still keeping my fingers crossed on this one.
Come often, and I hope to chat with you soon!
Take care -
Patze
Hi stillsguy :)
I read your story with interest. You've certainly been through a lot.
I'm pro Plaquenil though. I read up about it too and the eye damage bit is mentioned but is very rare. I know it's helped with brain fog and with general energy levels. I don't know if it's helped with pain or not. i don't want to stop it to find out!!
I'm one of the lucky ones who has never been bad enough to require Pred as yet.
Take care - Scottie :)
Hi stillsguy! Welcome to Sjogrens World!
What a story...you have been through and seen alot in your journey...but its made you all the wiser!
I'm also a user and believer in plaquenil.....I think it has helped me overall throughout the years and I get my eyes tested regularly with no problems to date...whewwww!
Anyway...come back here often to read about the points that interest you and ask any questions that pop up....your in good company here!
WOW!
Stillguy, I read your post then noticed I had stopped breathing! Man! You done been through some stuff! You had me terrified wondering if SJS alone was causing all of this, but then you included lupus and I was still shocked, THEN you listed ALL the OTHERS! LORD HAVE MERCY! I must admit it was all a bit too much for me. I can only imagine what you think about it. You seem to have a good sense of humor, that's good!
So what is life like for you? Are you up and about? Do you work?
Well if you are not doing any of these you most certainly should be writing novels, you're very descriptive with words. You probably have just as much knowledge as most writing some of these to write medical journals or something! That I really mean!
Stillguy I see why it took you a while to tell your story it's a mouth full or should I say a page full! I'm needing a break now, kind of feeling weak. It's hard to know someone is going through all of that! Maybe it's knowing it all, all at one time, the puzzle all laid out so graphic and all. And you say there's more?
patxe lynmarrie and scottie
thnx 4ur welcome. Ive been surfin awhile and glad i started to chip in abit. these sites and their warmth and comraderrie r such a touchstone, thank you
bernice, ur words of kindness r very appreciative welcome made for remembrance. and yes i was a writer actual paid one too boot! i really wish u the most painless longest life pozsible. ANd yes my story had hardly been told', perhaps someday soon?
bless the dog dsys of summer amd all thimgs female, bur i have to chat witjy daughter so mayne well hold off on tjat last thoughtz?
Stillguy,
Glad to here from ya! I do hope all is going well for you as of late. My wishes are the same for you. Your story is one for a medical journal and you do describe it so well, in great details and all, me I'm a little too forgetful these days to recall mine in great details, I can't just lay it all out like that, besides I do well just remembering upcoming doctors appointments, though sometimes when I read a post it causes me to reflect back to some of my experiences, but believe me it's nothing such as yours. It just goes to show when we THINK we got it bad there's always somebody with more to talk about.
Keep your chin up and keep pushing through!
You can be an inspiration to others as we all go through this journey together
Peace & Be Blessed!
Bernice