can any one help (new member)

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wees
New Member


Date Joined Sep 2009
Total Posts : 5
   Posted 9/13/2009 11:15 AM (GMT -7)   
hi
 
im new to this forum and was just wondering if any one could help me. i have had a ana blood test and is double what it should be i keep getting alot of headaches, foggy brain,pain down my spine ,very red cheeks,severe tiredness,hot sweats and genrally feeling week in my muscles i saw a rumy but she ruled out ra and am going back to see her does any one think this could be lupus i just feel there not giving me much info with whats going on and wondered if any one else could help. thankyou for letting me ramble on and any answers will be wonderfull .
 
thanks x

Meeko
New Member


Date Joined Sep 2009
Total Posts : 3
   Posted 9/13/2009 3:20 PM (GMT -7)   
In the 80s, I had an ana in the 600 combined with Reynauds. But my internist said it was some sort of false positive since I didn't have any symptoms of lupus. I went through a lot of strange symptom and finally got a Dx of fibromyalgia. OK fine- then my ana went back down to normal, RA negative- so all doctors are content. But I am realizing now that what I had was some sort of initial symptoms. For example, when a person first gets oral herpes - it is a red rash all over the mouth, but later, they just get a sore here and there. The same thing with chicken pox later showing as shingles. The same disease can change into different things as it moves along.
For me, somebody finally put my psoriasis together with all my joint pain and I got a proper diagnosis of psoriatic arthritis. This is also an auto immune disease. Diagnosing took 20 yrs.
My guess is you do have a problem starting with your immune system. You are in the initial phase. It is probably too early to tell what you are going to end up with. You may even go into remission further complicating the whole thing.
Foggy head goes along with migraines- which may not even be related to the ana problem.
If nobody ever figures out what you have that is probably the best diagnosis there is- because it means you don't have really bad- deadly - problems. You might be miserable, but just putting you on steriods or the new bio-meds to hold down your immune system can be worse. If you stop your immune system from working, it may not fight off cancer. This is a very tricky area.
I wish I could tell you some magic thing to do- or say "Don't worry about it"- I can't. If you are having a good day, go try and enjoy yourself. Don't stress over every little symptom, or worry about what caused all this- slip in some happiness and wait and see.

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/13/2009 6:58 PM (GMT -7)   
Hello Wees,
 
You have found the right place for support and encouragement.  Please know that your symptoms are worth checking into and yes, they do sound like Lupus.  Do you know what your ANA number is?  It's terrific that you have a rheumatologist already on board.  You're way ahead of the game!  I'm sure she's probably already suspecting Lupus too.  Best thing for you to do is keep a daily diary of all your symptoms and take pictures of any rashes you get.  When you're with your rheumatologist make sure she really listens to you and doesn't brush off anything important you need to say.  We have to be our own advocates when dealing with Lupus.  It's very complex and sometimes the diagnosis doesn't come quickly, but we have to keep pushing!  You will eventually get a diagnosis and treatment (regardless of whether it's Lupus or not).
 
Please keep in touch with us here and ask any questions you like.  We'll help you along!
 
Blessings,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content. Phillipians 4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, PTSD. Prednisone, Imuran, Plaqunil, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6,
 Moderator for the Lupus and Fibromyalgia forums


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 9/13/2009 7:19 PM (GMT -7)   
Hi wees, I also wanted to add my welcome. I'm sorry you are going through this. The whole thing can be very overwhelming, especially when you do not have a diagnosis. Sometimes it can take a while to get the right diagnosis. Like Ginny said, it's really important to keep track of your symptoms and also take pictures of your red cheeks or any rashes to show your doc. Hang in there. This is a great forum and you are among peoplw who understand what you are going through.
dx: UCTD (lupus), sjogrens, reynauds,
meds: prednisone, plaquenil, methotrexate, tramadol, neurontin,
doxepin, folic acid   


wees
New Member


Date Joined Sep 2009
Total Posts : 5
   Posted 9/14/2009 10:01 AM (GMT -7)   
hi,thank you all for your replies any info is good and nice to know there are people around to help you with your worries.ginny you asked what my ana number was he just told me it was double than what it should be . also i keep getting alot of heart flutters do you think this could be linked.
thanks.

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/14/2009 11:32 AM (GMT -7)   
Hello Wees,
 
Oh yes, heart flutters or palpitations are very common.  It's what put me in the hospital to get my diagnosis actually!  It's called Libman Sach's Endocarditis.  Inflammation of the mitral valve.  The valve is inflammed and doesn't close properly which allows blood to seep back into the other heart chamber.  Once the inflammation is treated, the valve will work just fine.  But that's likely what you're feeling.
 
Definitely tell your doctor about the heart flutters. Soon.  No need to live with that happening longer than necessary.  Mention Libman Sach's as well.  You might have just hit on the symptom that will get your doctors really moving on this!
 
Keep me posted!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content. Phillipians 4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, PTSD. Prednisone, Imuran, Plaqunil, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6,
 Moderator for the Lupus and Fibromyalgia forums


wees
New Member


Date Joined Sep 2009
Total Posts : 5
   Posted 9/14/2009 12:42 PM (GMT -7)   
hay grinny thanks for the reply i dont want this to sound silly as am really new to this but if im getting those flutters am i in any immidiate danger should i go down to and e or anything . could this just suddenly kill you.
thanks.

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/14/2009 3:55 PM (GMT -7)   
Hi Wees,
 
It's not a life or death situation, but you should contact your doctor today or tomorrow and get in to see them this week. 
 
If you start getting any shortness of breath, or if the flutters start to get really strong or don't stop, I would head over to ER.  That way you can be looked at right away.  No waiting to see your doctor.  But I think once your doc knows you're having this you'll get an appointment right away.
 
You'll be okay.  Don't panic.  Just tell your doctor, they'll guide you from there. 
 
Blessings,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content. Phillipians 4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, PTSD. Prednisone, Imuran, Plaqunil, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6,
 Moderator for the Lupus and Fibromyalgia forums


wees
New Member


Date Joined Sep 2009
Total Posts : 5
   Posted 9/15/2009 3:26 AM (GMT -7)   
hi ginny thankyou for all the information . You have def given me more insight into what could be going on,the doctors seem to be not really answering anything im telling them they make me feel its all in my head. i actually have a cardiology appointment on the 14th of oct so should i just hold on till then.
thanks x

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/15/2009 4:22 PM (GMT -7)   
Hi Wees,
 
Wow, that's still a month away.  Keep an eye on it and if it gets worse go to the ER.  That way you'll get seen immediately.  I know what it's like to be told it's all in your head..... I got that too for a long time.  Then the heart stuff started and I made them eat their words.... It's frustrating as heck.  Listen to your instincts Wees.  If you think you need to go to the ER, then you should go. 
 
Blessings,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content. Phillipians 4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, PTSD. Prednisone, Imuran, Plaqunil, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6,
 Moderator for the Lupus and Fibromyalgia forums

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