Welcome, you have found a fantastic group with tons of information and advice. I was diagnosed 2 years ago. Like you - I always hope that I will return to normal. So far - not a chance. I am in the middle of a fight with disability insurance. I thought that working would keep me sane so I have been working 1/2 time when I am not totally off work. They will not accept my claim because they feel I am still able to perform "my sedintary job duties". Out of sick leave and feeling very lost. The struggles we must endure are very tiring and depressing.

Leanne :(

I completely understand. I work as an Instrument technician in a chemical plant. Ladders, stairs, all that. I was only off for a month and a week for a total hip replacement and had to go straight back to regular duties. I will have some lung function test done in the next 2 weeks to find out if I am even able to go back to work. I've been working at the same plant for over 20 years, we got bought out and of course they changed our benefits. No more unlimited sick leave with a doctors excuse and now we have PTO or Paid Time Off (which use to be our vacation). I do have about 20 more weeks short term disability and insurance for long term to cover 2 years if they think I need it. but much longer and I wont have a job to go back to. Then meds will be really hard to come by. thanks for the greeting and I've already seen great info that has helped.

Welcome to our little group! Hope you get what you need here. I have enjoyed having a group that understands what I am going through. I also hope your diagnosis will lead to control.
I do feel much better than I did before diagnosis- but my life will never be the same.
Mary Ann

@ Lela2 ty, im already glad to be here.

@MToennis Ty maam and im hoping it will get better now with treatment

@hellodian yeah, I've been playing bat mitten between cardiac / pulmonology for years. To always be sent to a new rumor tologist. I remember one visit in particular. The doc told me it wasn't lupus again, I was so worried I started to cry and hugged her. Its been many years since that day. But for a long time i've hoped for a diagnosis. Yeah joints are tore up. AVN in my right hip cause a total replacement. Blood clots all over. waiting on blood work. And the big worry of mine, I've stated to fall, call my dog the wrong name, heck call my kids the wrong name at times. When moving information i sometimes tranpose them, (i could never spell well ) lol but at other times I have a true clarity, Like nothings going on, were check that also. But the lungs are the biggy right now. ty all for speaking. being a guy in here I almost feel like i walked into the wrong bathroom. But Im going to need help. I know it. To many years of not knowing and now. I never planned for this,always thought one of the incidents would cause something else so the docs could all say, yyup bad ticker or whatever. ty for any support. And if i ever say something inappropriate just delete it or tell me

Panic attacks are one of my problems too I take cipralex for that .I get alot of pain
i get panic attacks ,its like my brain is saying too much pain !

Hey, LR!

Guess what? You're not the only guy here!

Listen, I'm with Hellodian on this one. One of the possible etiologies of immune disorders is exposure to toxins.

Get the hell out of the plant if you can. My mom said my symptoms started after we rode bicycles through a field that had been sprayed with insecticides in the 'early 70s.

Anyway, for men the symptom profile is usually a bit milder, but I do not like the idea of your exposure to all those chemicals.

As for calling the dog the wrong name, yeah-- that's brain fog. It comes and goes. IMHO, the worry is worse than the symptoms, and the symptoms feel worse to us than they do to others. I've given presentations on days I felt like I'd been hit in the head with a baseball bat. Driving is fine, sense of direction... er, not so much. Woke up on my way to work in my clothes, well dressed and groomed, barely remember how I got here, that kind of thing.

Any of this sound familiar? Welcome to the world of transient dementia! The bad news is, it doesn't seem to get much better, but the good news is, it doesn't seem to get much worse, at least based on the posts here. I mean, no one here has declined much mentally, that I can see, since the board started.

Two weeks on the prednisone at that dose-- which is pretty frickin' high-- you should see some improvement about now. Just be careful, because that stuff can make you irritable and crazy. And also, you can drink enormous quantities of alcohol without getting drunk, so be careful.

Anyway, welcome! There are a few other guys here, but none of them have posted in the last year or so that I'm aware of.

--Cat

Nice meeting you Reaction Accelerator, I'm sure I have less symptoms then some but more than others. Like today A clot has formed in the center of my forearm. I felt a lump for a few days but now its a lump with a thick hard vein going to my elbow. I have lung involvement and lost another 10% function over a weekend I felt bad, by monday I went to work and almost passed out, busted out my hand pulse/ox meter and was around 70. Ive had a total hip replacement from AVN and have about 5 muscles in my body that have torn from the original location, balled up and do nothing now. suspect past PE from blood clots in the legs (arms are new) I had some good days maybe even 2 weeks when I started the pred 80 but those turned to half days, I have panic attacks, anixety, depression, I tryed to fix my septic tank today and lasted about 20 minutes. I have swelling with and without activity, strangely sometimes it all my joints, and sometimes its above them, and hurts differently. Im a little worried because im still taking the steroids and Im not feeling as good as when I started. Ive noticed similarity's between leukemia and lymphoma and even some of my blood works looks like lyhme disease idk. Stat check, (I have no idea what these mean) ANA screen *H = 1.17, anti DNA antibody = *H 1, C3 = 169, C4 = 42.7, RNP U1 RNP = *H 54.10. RF level = 15 , Sci 70ab =*.99, Smith Ab = *H 66.73 theres tons more but thought id start there. IDk if these numbers are lower than most. with MCTD, for there sake i hope not, I dont have much hope for myself these days. Im afraid After all the rumor tologist ive seen, that I havent found one that says Im sick with something I dont have. He's talking chemo right now, lung function wasent where they wanted it about 49%. but waiting for results on active disease or scaring. Im not sure I can work. But feeling like i do............. I dont think i could wash my truck if i wanted to. (i hate spelling) anyway thanks for the message. Any part of this you want to comment on, or anyone please do. I have been checking the forums wanting to talk about clots and all but since no one was typing I didnt want to bomb the place with my (most likely) small issues while some have it so much worse. Ive lost faith in any type of god, doctor and mentor. This place has been the only thing ive trusted in a long time, People are honest, So i return the favor. And you all have helpped me. Please dont give up on me, im sure i will settle down.

Running out the door to work, but here's my very basic, totally non-professional impression:

* The lung function symptoms are serious. Those are the ones to watch. I would eliminate any other risk factors, whether that's chemical, smoking, pollen, anything, and watch that closely.

* Lung symptoms are one situation where sometimes chemo makes sense-- maybe, maybe-- if those continue to decline.

* Treat the panic attacks. I would go for meditation, light exercise, anything you can do, maybe benzos if you have no hx of chemical dependency. It's great that you can still do some chores!

* The clots can be MCTD related, but in my case, MCTD was only one of several causes. Obviously, that has to be monitored closely, too, and if you really did have a PE, that has to be dealt with agressively, can't remember if you are on warfarin...

Sorry I gotta run, keep hitting us back, let us know what happens, here's hoping for a nice, big, fat, long, REMISSION...

--Cat

Doc says the blood work for the blood clots (mctd related or not) Cannot be found or was possibly not taken. took more blood work today. Lung test look better than anticipated so starting Cellcept (Mycophenolate) today or tomorrow and in 2 weeks start reducing 80 mg pred to 60 again. scared of that but he's the boss. Approval for continuation of STD till Jan 14th good news.