Cathy, I hope you will be successful in getting the correct dx and also that you will continue to post here! I think you are valuable to the board, and I notice that you are very good at responding to newbies and helping when they post on AI boards other than this main one!
If you do have scleroderma, Roadback is a great resource for sclero patients on minocycline. I'm seeing more sclero than RA there lately, as a matter of fact.
The most important thing is that you are feeling better, that you haven't given up, that you keep questioning and trying to learn and trying to find an answer that makes complete sense to you. I think you are a good example for others to follow, and I wouldn't want this board to lose you! Take care.
I think you can only do so much research, reading, before you drive yourself batty..
but yeah its good to read/ research some.
Then you have to figure out , what the meds and your Drs are making sense.. and kinda play and ITS YOUR BODY... you'll know whats best for it.. what works..
Like I take verapamil and its for highblood pressure, which i don't have.. I take it, bc
THANK GOD, a wonderful nurses ..(she's the kinda btwn drs and Rn's)
came up w/ it , as a solution for My MIgraines!!! YAY.. gawd what a f release..
now what i'm wondering, are your boobs different, on the other side too?
lopside, one white, one red?... naw not gay, just had to say something, for
maybe a chuckle or the basic weird mood, i'm in for lack of sleep!!! lol
gentle from a distance hugs :)
Whispered
Follow your bliss~ and add:
Prozac~(bipolar), embrel, folic acid,,Mobic,valium, darovcet, vicodin and atarax
liptor & Exhaustion! :P lol
All right, you all got me laughing, thank you. First of all, YES to the boob thing, I just was being circumspect, but that was another thing I have noticed on the right side, just a small change, but a change. My hubby doesn't care, thank goodness (I don't think he has even noticed). I have had the red ear lobes for years, but all of these symptoms: fingers, toes, ears I had put off to frostbite being from Alaska (go out and play, it's only -30 you wimp :) I have read lots on how everyone explains any physical symptom away to put it to rest, and I honestly thought all this extremity coldness was from frostbite. My nose and cheeks I am sure are frostbit from downhill skiing.
Yes, there is a blood test for scleroderma and that was done on 6/6/6 - next time I am rummaging around in my blood test file I will let you know what it was - but it was definite for scleroderma.
GoGo - I plan to up my minocin after Thursday's appointment. I almost upped it myself a month ago when I realized what was happening with the scleroderma, but I promised my primary I would not do anything with my meds without talking to her first, so I waited. Plus I want to see how my labs go on another 60 days without the MTX and Plaquenal for the previous high liver enzymes. I read that MTX has a high rate of liver problems and minocin is very low. I am hopeful I still have normal labs, which will make it four straight months of minocin and normal labs, but we shall see.
And today's symptom of the day is this right index finger which is twisting up (I explained it away as "mouse hand" years ago) and was inflammed and skin stiff this a.m. upon awakening (not unusual, that's my carpal tunnel) and when I did my hand exercises and finally got it to curl, something is wrong with the first knuckle and I can feel either a tendon or bone rubbing against each other. So today will be knuckle day. Tomorrow - who knows? It's a box of chocolates for me.
Again, thanks for the support, I greatly appreciate it. Happy Hoppy ~~ CathyAK
Edited by justsaynoemore - 23 March 2008 at 9:00am
Cathy, please, don't ever think that you don't fit in here. You're a valued member of our group and we would feel a terrible loss if you left us. Besides, for what it's worth, from what I've read, your DX places you squarely in the autoimmune category. Like you, I was DX'd with an undifferentiated connective tissue disease and am being treated like it's RA or lupus, just as you were. I don't have RA or lupus at this point, but it's still autoimmune, like you, and let anyone just try to kick me off of this board!!! LOL You belong here, regardless of AND because of your diagnosis. We need you and I hope you need us.
YOU'RE A LITTLE CLOSER TO HEAVEN WHEN YOU LIVE IN THE MOUNTAINS
Imuran and Plaquenil for Sjogren's, lupus (SLE), vasculitic neuropathy and possible autoimmune inner ear disease.
Have you been to www.sclero.org ? My daughter has/had en coupe de sabre scleroderma and the scleroderma network helped us locate and make an appointment with a scleroderma expert. She was treated with methotrexate and supplements for 1 - 1/2 years and is in complete remission. They also have a great forum. It might give you some piece of mind to see a specialist and know you are getting the proper treatment. There are treatments that can help.
Cathy, what we all have in common is we're dealing with immune systems that are out to get us, seems like. Someone like you makes it seems less personal, disease isn't a character failing or something any of us deserve. Newbies, and I count myself among them still, need to read that there are options - decisions that need to be made, diagnoses to pursue, that it's a process and not a nightmare, and definitely that there's a life outside of a medical condition. Hang around eh. You're valuable. Let us be here for you too, people to "listen", who understand some of how you feel if not exactly to the letter of the condition, that you're going through.
RA, Sjogren's, asthma
MTX 25mg/wk, Relafen 750mg 2xdaily, folic acid, biotin, supplemental vit D, calcium, and "for women" formula multivitamin,omega-3 fish oil; Combivent as needed for asthma
Jesse, Laker - thank you. I was being a little to sensitive to the nuances in here. And Laker, I hadn't seen that site before, but have been to others, which I have noticed are mostly in Canada, England, other countries. I will check it out. Unfortunately, MTX didn't agree with me, but I am going to bring this up to the top of my list on Thursday. I am starting to see the situation a little more clearly now and can understand why rheumatologists and other doctors don't want to touch (literally) a sclereoderma patient. I work with my hands for a living and if I lose my fingertips, that isn't going to help an already badly damaged family situation because of my illness and the huge amount of wasted monies following medical rabbit holes. Hope everybody is on a Easter Bunny sugar high :)
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Let us be here for you too, people to "listen", who understand some of how you feel if not exactly to the letter of the condition, that you're going through.