Hello New and question. scared. PLEASE HELP !! (DX...fin)

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Ms. Wonder
Regular Member


Date Joined Aug 2010
Total Posts : 27
   Posted 8/29/2010 9:02 AM (GMT -7)   
 

Post Edited (Ms. Wonder) : 9/3/2010 7:37:47 PM (GMT-6)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 8/29/2010 10:03 AM (GMT -7)   
Hello, and Welcome to Healing Well,

A positive ANA can indicate any of several auto-immune diseases; it is not specific to Lupus.

Sjogren's Syndrome can contribute to mouth & tooth issues, as well as be the cause of "brain fog" and some of your other symptoms.

It sounds as thought they are actively treating you; that is a very good thing. Many of us do not get to the right doctors and are ignored. Is there a rheumatologist treating you?

I hope you feel better soon,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Ms. Wonder
Regular Member


Date Joined Aug 2010
Total Posts : 27
   Posted 8/29/2010 10:39 AM (GMT -7)   
Hi !!! Thank you for reply!!! Yes i am being treated. They had me start Plaquneil about 3 weeks ago. They took it up to twice a week when they saw results of pulmonary exam.

Yes, I know a positive ANA does not equate Lupus. Yet, I was told (Sm/Rnp) were Lupus features. (isn't that correct?)

A few weeks ago (i think 3) after i was in sun for about 10 minutes and iron infusion, my body really retaliated on me. I started to get solu medrol IV. It only gives partial relief. For about a day. I have progressively been getting worse.

Breathing. Pain. Mind. Chest. I can not even keep up with my symptoms to tell him. (i often feel guilty, i don't know why)

Right now as of today I am on 30 mg of Prednisone. (keeps going up) Twice a day Plaqunil. Lyrica 100 mg. Solu medrol IV (every other day it seems)

And yes, I am thankful I am being treated actively. I was ignored for about 10 years, or more? And throughout both survical spine surgeries. I knew something else was going on.

Have you heard of the drug Amitriptyline? (i just started it on thursday, i think that may be what is making my mind feel worse?)
although it has helped with sleep and pain. i think somehting is not firing off right in my brain.

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 8/29/2010 11:11 AM (GMT -7)   
I am sorry you are doing so bad. I wish I could offer more than support and encouragement but at the moment I can't think straight.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Vicodine when things get too bad, prednisone again, various vitamin/mineral supplements, cozar, duragesic patches
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

Ms. Wonder
Regular Member


Date Joined Aug 2010
Total Posts : 27
   Posted 8/29/2010 12:20 PM (GMT -7)   
I appreciate your response redrose. especially knowing how you feel. i can relate. thank you!

at this poing i am looking forward to the IV port. so they can start helping me. they can't even get my blood right. or the entire steroid in me anymore. last week i was poked 22 times and nothing? i just cry. in pain. quietly.

today is a abit better. although something is not right with my mind. completely confused. and my neck and jaw are is killing me. (that seems to be taking over the rest of my symptoms today........even labored breathing, chest pain and joint and all over body pain)

although that may change in an hour.

thanks again!! i really appreciate it. I hope this made sense.

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 8/29/2010 1:50 PM (GMT -7)   
hi!
we are glad you are here. Regardless of what it's called, sick is sick, and Boy! do we know sick. We'll help you take a deep breath..... ok, you aren't losing your mind, and guilt? I feel that way because other than being puffed up from prednisone, I don't look sick! So how can I be as sick as I say I am??? I actually said that to my dr. And he said that's what many of his lupus pts. say. Autoimmune illnesses are tough on a good day, and notoriously hard to diagnose. One day the antibodies are there in our blood, the next month they aren't. You'll note from many of our posts, that sun, the wonderful, glorious, life giving, beautiful, warm, (did I mention wonderfully warm??) sun is our enemy. I lived to be in the sun, and it makes me my sickest. And, one reassurance, many of our symptoms come and go, as we flare and remit. That's why drug therapy is so important. And seeing your drs. as often as you need to! So you are on the right track. Keep us posted and know, at least, that We know yeah . And you can cry loud if you want to. I am a sobber, a loud sobber.  And a difficult IV start. My central line was alittle scary, but a blessing, because my veins are lousy, too and the meds felt like acid being dripped in them. I'd tuck my microwave heating pad around your neck for you if you were closer, and hope you will feel less rotten, soonest.
Hugs,
suetoo
ps. thinking "crooked" is perfectly ok here, too. Hope you feel better, Red, too.
 

Ms. Wonder
Regular Member


Date Joined Aug 2010
Total Posts : 27
   Posted 8/30/2010 2:56 PM (GMT -7)   
hi ! thank you suetoo. the doctors today said they are treating me as if i do have lupus. they had said that before. my memory is fading. everyday i seem to get more and more dumb? :) i don't even care. i do trust them.

starting tomorrow, i do 500 mg of solu medrol IV for 3 days in a row. after that they start IVIG.

still waiting for the IV port.

thank you for the support.

p.s. they said the reason for a lot of my mental/emotional stuff may be because it is effecting my brain. not just my lungs. :C
i hope i get relief soon. i don't know where i am going to be living next month. i am doing my best to be present. listen to music. breathe through the pain.........and not go completely mad?! :)

really appreciate your kind words. and relating to me.

take care and see you around here soon

challenged nurse
Regular Member


Date Joined May 2010
Total Posts : 69
   Posted 8/30/2010 3:42 PM (GMT -7)   
Sorry to hear that you are having so much pain. I am in the process of being checked for Sjorgens disease myself. I was taking Amitriptyline myself and am currently being tapered off. I was taking in for nerve pain and sleep. I was on 100mg daily but now they are changing me to Lyrica. I have had some of the symptoms that you are talking about but can't offer much advice because I am still in limbo myself. Keep us posted.
DX: Lupus(UCTD), Asthma, Mitral Valve Prolapse, Heart Murmur, Anemia, Vitamin D def., B12 def, Hypertension r/t lupus, TIA, muscle weakness, numbness, tingling, headaches, night sweats, IBS.

Meds: Plaquenil, Prednisone 10mg, vit d3 50,000 weekly, b12 injection, Prevacid, Tramadol, Align, Kapidex, Amitza, Miralax, Vaseretic/HCTZ, Aspirin.

I can do all things through Christ that strengthens me.

ta25938
New Member


Date Joined Aug 2010
Total Posts : 4
   Posted 8/30/2010 7:25 PM (GMT -7)   
Hello, I am sorry you are in alot of pain. I am 28 and going to see a rheumy soon because I had a positive ana titer, don't really know what that means, I have joint pain and stiffness no rash but the doctor sais it could be rheumatoid arthritis or lupus. I will pray for you as well as everyone else who goes through any pain they can not control. turn

Ms. Wonder
Regular Member


Date Joined Aug 2010
Total Posts : 27
   Posted 9/3/2010 6:35 PM (GMT -7)   
hi. they are now saying MCTD. (polymyositis, sjogrens, lupus)
such a hard week. went to appointments everyday bymyslef. getting homeaid soon. infusion nurse did best everyday to push 100mg of solumedrol in with butterfly. m-f. getting IV port in wed. did pre-op for IV port sugery today. (on own.....limping through hospital.....i think people think bc you look half decent and....hip (hate that word) you must be ok) i had a nurse that walked me through to lsat 5 apts.

then went back to rhem. apt. which push IV solu medrol 100 mg through butterfly, after veins blew again 5 times.

also got prescribed colchicine for labored breathing/apin in chest. (doc said hopefully should work tonigh)

i hope the IVIG works. i got approved. they ran into parking lot to tell me as i was getting in car. i will be able to start the following monday after IV port on wed.

this is all so sad. i always was able to rely on my brain. now i can't even rely on that. (they said the IVIG should help)

i hope this IV port surgery does not even make my flare up worse. i listen to music a lot. and close my eyes. smile. a lot. and cry. at times..................with YODA !!!!!!!!!!!!!!!! :)


i miss my body. i miss my mind. (i alsways figured the 2nd half of my life would be easier. i am 38)

Post Edited (Ms. Wonder) : 9/3/2010 7:38:52 PM (GMT-6)


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 9/3/2010 9:24 PM (GMT -7)   
I am sorry you are having such a rough time I am not doing well myself right now. I hope the IVIG works.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Vicodine when things get too bad, prednisone again, various vitamin/mineral supplements, cozar, duragesic patches
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

Ms. Wonder
Regular Member


Date Joined Aug 2010
Total Posts : 27
   Posted 9/3/2010 10:09 PM (GMT -7)   
i am really sorry redrose that you are having a rough time as well. thank you for your kind words. i really appreciate it. :)

Ms. Wonder
Regular Member


Date Joined Aug 2010
Total Posts : 27
   Posted 9/4/2010 11:06 AM (GMT -7)   
HI.........i am very thankful !!!!!!!!!!! For the first time in months i can breathe without too much pain. and labor. the colchicine i started taking yesterday must have started working? it's one less symptom. :) !

i like my breath.

i did not mind as much that it took my usual hour to get out of bed from the inhumane pain in my right foot, legs and hands.

i just thought i would share this with you guys. thank you for your support and being here for me. I really appreciate it.

i am thankful my heart is less heavy today. (literally)
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