negative ANA sed rate 47

Negative Ana
1
diagnosed with Lupus and now my Ana is negative for 7 years - 100.0%
0
Sed rate 47 and sometimes higher...never lower - 0.0%

 
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Paula Marie
New Member


Date Joined Oct 2008
Total Posts : 4
   Posted 10/15/2008 1:04 PM (GMT -7)   
I've been diagnosed with Lupus 14 years ago.  I have had positive ANA's in the past but for the past 7 or 8 years my ANA has been negative.  My sed rate is 47 as of this past month.  I ache all over.  Hips, knees etc.  Is it normal...for lack of better word...to have a neg ANA but still have Lupus?
I just feel lousy most of the time but I try to fight it.  I also have difficulty sleeping.  I usually have a low grade fever.  I've been told I have fibromyalgia and just recently Cronic fatique syndrom.  I am also hyper thyroid. 
 
Last year I was in the hospital for 9 days and was also told that I have iron deficiancy anemia.  I don't even know what to do about that!!!
 
Does any of this sound familier?  I sound like I'm in critical condition but I am not.  Just miserable and achy all the time.  Did I mention that I also have a herniated disc in my back and neck?
 
woa is me.  HELP?????? 
 
Thanks for listening
Paula Marie
 

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/15/2008 1:20 PM (GMT -7)   
Hi Paula!

Welcome to the forum!

Anemia . . . Did your doctor tell you how much iron to take? If not . . cal him TODAY and start taking supplements and get that rechecked until it levels out and become normal.

ANA going negative . . . It can go + and - over time . . . but our meds can cause it to go negative too.

Address the sleep issues with the doctor too . . . poor sleep does not allow the body to recharge or heal itself . . . so make sure you bring this up with the doc.

Are you hypo? or hyper? thyroid? I bet its hypo (which is low thyroid activity). Do you take meds for that? If you are hyper, you may not be on anything . . . but if its hypo, your doctor should be prescribing synthroid or levathroid or something like that. Are they watching your levels?

Just some quick ideas. Some of the others will have some other ideas, I'm sure.

Glad you found us!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Paula Marie
New Member


Date Joined Oct 2008
Total Posts : 4
   Posted 10/15/2008 4:07 PM (GMT -7)   
Hi,
 
Thanks for responding.
 
I have an appt with a new Rhum. on Friday.  I am going to mention everything to him.  In fact as I am thinking about it, I am going to write down my ailments and questions because I know I will forget something.
 
I've been diagnosed with Hyper thyroid but it never seems to regulate.  Either too high or too low.  I get the shakes so often.  It's more of the shivers from within.  It's a horrible feeling and I'm not even sure it's because of my thyroid.
 
I never followed through with the iron deficiancy thing.  I am my own worst enemy sometimes.  Do you ever get tired of taking meds?  I know I need to at this point and I will do whatever the doc tells me to. 
 
As I said it's been 14 years and before that I was not feeling well, but the doctors suggested I needed someone to talk to.  Go figure.  If it was a man complaining they would be investigating but that's water under the bridge so to speak.  I do battle with depression.  I lost my almost 18 year old daughter due to a car accident 13 years ago.  That's a whole other support group and reason for my frame of mind but not totally my ailments because I was ill before that.
 
Trying hard to stay focused.
 
Paula

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/15/2008 4:28 PM (GMT -7)   
((((( Paula )))))

The grief from losing your daughter probably caused a good flare way back then. I'm so sorry for your loss . . . I know the years don't erase the pain associated with such a loss. (((((((( Paula ))))))))

Good! Get that list typed up and bring two copies with you to the Friday appt. There are some suggested content for the list in "Lupus Resources" (link at the end of my signature). That list is closer to the bottom of the topic. Hold one copy and give one to your doctor. My rheumy (first visit) actually took the notes I gave him and conducted the 1+hour visit straight from my notes, asking questions and adding notes as he worked his way down my list.

He'll probably order a TON of blood work and urinalysis and make a second appointment where he'll go over everything. Hang in there. This can all take some time to sort through. If your thyroid is acting up it can cause a LOT of similar problems (to Lupus).

If you have any questions, feel free to ask.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Paula Marie
New Member


Date Joined Oct 2008
Total Posts : 4
   Posted 10/15/2008 7:10 PM (GMT -7)   
Thanks Rosie, It helps to be able to talk to someone. Sometimes I feel like a cronic complainer and people just don't understand. Some days I just say I'm okay not to complain. Ya know...

I will make that list and I thank you again. I will keep in touch.

-Paula <o>

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/15/2008 7:45 PM (GMT -7)   
Yes . . . I recognized chronic fatigue at age 33 and didn't come up with a good reason until I was almost 50. No help from doctors and not one of them sent me to a rheumatologist. I had seen 3 pcp's, a derm, two orthopedic doctors, a spine doc, pain management and multiple different physical therapists. FINALLY, I looked up information online (like you are doing) and realized that I should have been referred to a rheumatologist a LONG time ago . . . and finally I started more aggressive treatment for my symptoms which had finally put me in a recliner for the better part of each day for almost two years. I'm glad you will be seeing a rheumy this week. I pray that he will be able to help you.

OH . . . consider going to your appointment freshly showered, but NO makeup, no moisturizer, no hair product. Be nicely groomed, but no product. The rheumy will appreciate seeing the true color of your lips and the condition of your skin and hair. These are clues which we cover up unknowingly.

I may not be online for a few days . . . but I'll be looking for your update when I am back online.

Blesssings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/17/2008 4:08 AM (GMT -7)   
Hi Paula, I'm so sorry for your loss. I lost my husband in 2000 and that was so hard. But losing a child. I don't think I could handle that one at all.
Yes yes yes, write down every question you can think of. Even if you have a hang nail it may mean somthing to the rheumy. Do you run fevers out of nowhere? that happens alot. little rashes. Also from now on if you get a rash take a picture of it if you can because by the time you get to the doctor it will probably be gone. You diffinently need to address the issue of the anemia. try taken the b12 that you stick under your tongue and let melt. Alot of lupies don't absorb it well. I think we all get tired of taking meds but the options are not that fun. Don't let the doctor blow you off. Hopefully they are good and through. Make sure they order labs and if you aren't satified with them go to another one. It can take 3 or 4 or more to get a good doctor.
Let us know how your appt; goes today I m really curious to see how the new rheumy goes. Oh see if you can find out if anyone in your family has any types of auto immune disease.
good luck and welcome to the group
hugs
carol
 
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
 Did you ever know that your my hero?
 
 


Paula Marie
New Member


Date Joined Oct 2008
Total Posts : 4
   Posted 10/17/2008 2:56 PM (GMT -7)   
Hi Carol,
 
Well, my appt was a disaster!  The doc didn't want to draw any blood because I had blood drawn a month ago by my medical Doctor.  He did do a bone density test and thank Goodness that was okay.  I am arthritic all over.  Both knees, neck, back, hips, ankles, hands, plus bursitis in my shoulder...etc.  You get the picture.  He didn't want to give me any meds other than pain meds for sleep and he told me to take advil or aleve during the day.  My ana has been neg. for 7 years now, and he doesn't want to treat me for Lupus.  I've had Lupus for 14 years with a pos. ANA many, many times.  Needless to say I'm just not happy. 
 
I mentioned my depression and about losing my daughter...and he blew me off...I mentioned about how my med Doc thought I might need something for Cronic Fatique syndrom.  He didn't want to hear that.  Almost as if to say it doesn't exist.  Oh well...My impression of him was that he had one hand on the doorknob and one foot out the door.
 
I am going to find another doctor.  When I left there he didn't schedule me for a follow up visit but said if one pill (pain med) didn't do the job at night to call him and take two.  I am baffled to say the least.  HE just added to my level of stress.  He was elderly...I would say in his late 70's and his hands were shaking badly.  Needless to say...it was an experience.
Am I right for feeling like this?
 
Thanks for listening...
 
Regards,
Paula
57 and achy

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/17/2008 3:34 PM (GMT -7)   
Hi Paula:

Man it sure sounds like you got a foolish doc. I don't blame you for wanting to run for the hills. I have to say it's not uncommon to have doctors doubt you when your ANA isn't positive. I've had lupus for 21 years now and I've had a Positive and Negative ANA on two many times to count. My current ANA is negative as is my double stranded DNA. So whenever I end up in the hospital the internal med teams that care for me say, "you don't have lupus". I tell them to talk to my Rheumy.

That being said my Rheumy is ultra conservative with my care. He feels that my previous Rheumy was to aggressive and I've ended up getting blood cancer in addition to my lupus, RA, Fibro, and Gastroparesis. So now my Rheumy is afraid to do anything as my care is a huge balancing act. Any specific change and I topple off and end up in the hospital.

I would see a different rheumy. I'm sorry that you ache all the time. Is is possible that you have Fibro in addition to your lupus. Several of us here have both disorders and they are so much alike that it's hard to tell which is making us ache? I want to also say I'm sorry about your daughter even though it's been 13 yrs I know it still makes you ache for her. I suffer from huge depression, if I can help in anyway please ask away. I've been told there's nothing to do to help me with any of my conditions except for a bone marrow transplant if we can find a donor and if I don't die before they choose to do it. They're planning on waiting until my body will no longer rebound. I understand depression big time here. So call on me anytime you need. Welcome to our forum and I hope you find the right doc to help you.

Hugs,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 10/17/2008 3:40 PM (GMT -7)   
I understand the loss of a child. It definately makes lupus worse. My ANA is neg and was when I was dxed you need a different rheumy. You need records from when you were dxed especially blood test results. I am having issues typing or would say more but deleting more than progressing is frustrating and painful.
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, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements

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