New here... Got a few questions..

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Regular Member

Date Joined Jun 2006
Total Posts : 329
   Posted 6/4/2007 8:15 AM (GMT -6)   
Hi All -
I'm on a journey of trying to find out what has been going on in my body for the last 2 years.  Everything started right after a hysterectomy in Dec '04 for adenomyosis.  Last summer symptoms started progressively getting worse to the point of going to my pcp to see what was going on.  He sent me to a neurologist, eeg came back normal, but showed shadow frequencies (slight tremor/seizure activity).  I have never felt like I was having a seizure, but I do have tremors.  MRI came back w/multiple lesions all over the brain. Started going down the MS trail and am still on it, but spinal tap came back negative, T-spine and c-spine clear of lesions, but with disc issues but not on the side that I have numbness and tingling the most.  Had an ANA Antinuclear Antibody test done, first one was negative, second one was positive. Fatigue, achey and heaviness are the worst symptoms I have right now. 
I'm on neurontin for the nerve pain (sharp twangs of pains all over, achiness, 'burning feeling' in certain places.  My neuro just put me on metanx also.
Now my neuro is putting MS on the back burner and looking at the possibility of Lupus since the test came back positive.  Has anyone here had a negative result, then a positive result?  Lupus is very new to me, can someone give me a few good links to check out symptoms and what I can expect from here on?  Does the positive result mean I have Lupus? 
Thanks a ton for all your help.
I not only use all the brains that I have, but all that I can borrow.
  Author: Woodrow Wilson (1856-1924), 28th U.S. President

Forum Moderator

Date Joined May 2005
Total Posts : 6941
   Posted 6/4/2007 10:05 AM (GMT -6)   
Glad you found us. There are several links (in blue) at the bottom of my signature that will help explain what lupus is and how it is treated. Please post back soon if you have any questions after reading a bit.


Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
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Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 6/4/2007 5:05 PM (GMT -6)   
Hi Denda,
   Welcome to the forum. It sounds like you have been through alot over the last couple of years. I hope you get some answers soon and on a good treatment plan to help you feel better.
  I have experienced some of the same things as you in the past. I developed adenomyosis right after my daughter was born in 1983 and had a hysterectomy 3 years later. about 2 1/2 years ago I started having seizures bad and had several MRI's that showed lesions on the brain as well. They were testing me for MS too. My spinal tap did show 4 positive O-bands but, they decided my seizures and postive tests were from Lupus CNS.
  A few months ago I was having tremors pretty bad but, they are controlled now with a seizure med. Hang in there! Hopefully, things will turn around for you soon.
   Some people do have a false/positive ANA. Some people also have a positive ANA and not have lupus. This is a hard disease to dx because it mimics so many other diseases. Read all you can about lupus. Lynn has some good links in her signature.
  Feel free to ask all the questions you want. This group is very helpful and supportive. Please take care and keep us updated. You will be in my thoughts and prayers.
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
mirapex,advair,foxamax,donnatal,folic acid.
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Regular Member

Date Joined Jul 2006
Total Posts : 150
   Posted 6/4/2007 5:25 PM (GMT -6)   
Hi Denda,
I'm sorry that you have had so many problems. I hope you are able to get some answers soon. I have never had a negative result and then a positive, only positives but everyone is different. You have found a good place to get information and feedback. Hope you feel better soon.
UCTD, Hypertension
Meds:  Plaquenil, Naproxen, Hyzaar, Cymbalta, multi-vitamin

Veteran Member

Date Joined Jan 2004
Total Posts : 4151
   Posted 6/4/2007 5:30 PM (GMT -6)   
My first ANA test came back positive however there was no titer information. My rheumy said that it wasn't really positive. My ANA DIRECT test came back positive but the ANA DIRECT test is not measured in titers, its anything over 120 is positive, and mine came back at 304. My last ANA test was negative. My doctor says that a very small percentage of people with Lupus that just carry the anti-Ro antibodies can test negative for ANA. Most doctors won't test further if your ANA is negative. I was lucky that mine went ahead and tested the antibodies. Have you been tested for the ENAs also or just the ANA?
Co-Moderator ~ IBS Forum
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin 2mg/day (tapering to PRN), Miralax 17g, Supplements

Veteran Member

Date Joined Mar 2006
Total Posts : 2570
   Posted 6/4/2007 6:16 PM (GMT -6)   
Denda, I had a couple of negative ANA test results before I had a positive one. This can be a long and frustrating journey and it pays to do some research and keep a journal of all your symptoms. This forum has been a godsend to me both for informational purposes and for moral support. Keep us up to date on your progress!

Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin

Regular Member

Date Joined Jun 2006
Total Posts : 329
   Posted 6/5/2007 6:24 AM (GMT -6)   
Thanks to you all for your advice and experiences. I learned alot with Lynwood's info. And it helps to know everyone elses experiences as well. I'm just tired of this journey already and have only been here about 9 mos. I'll report back when I know more. The following are the only tests that I know have been done on me:

C-Reative = .08
Methylmalonic Acid = <.1*
Glycohemoglobin = 6.1
Glucose = 70*
CK(CPK) = 54
Thyroxine Free = .9
TSH = 2.275
Vitamin B = 450
Sed Rate Westergier = 8
Anthrombin Antigen = Test Not Ind (I'm thinking this means it wasn't ordered?)
Lupant Screen = Negative
ACTPart Thromboplastin Time = 26.4*
ANA = Positive
ANA Titer = 1:320*
Anti ds DNA Antibody = None detected
Rapid Plasma Reagio = Nonreactive
ENA Screen = Non Detected
Senne Portease3 AB = 2*
Myeloperoxidase AB = 2*
ANGA FA= None detected

I don't know why there are astericks beside some of them. But my neuro says everything else is normal. I might have misspelled some of the tests, the faxed copy I have is horrible to read, very dark.

Thank you all again.
I not only use all the brains that I have, but all that I can borrow.
  Author: Woodrow Wilson (1856-1924), 28th U.S. President

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 6/5/2007 8:57 AM (GMT -6)   
Denda, I also wanted to welcome you. I'm really sorry about everything you have been through and that you still don't have any answers as to what is causing your health problems. As you have already experienced it can be a long frustrating journey to try to get an accurate diagnosis. As some of the others have said, a person's ANA can fluctuate between positive and negative and there is a small percentage of people with lupus who don't have a positive ANA - a positive ANA can be present in several diseases.

I'm glad you joined us and please continue to ask questions. We'll do the best we can to try to answer them. I'm afraid I'm not much help with the labs you listed - hopefully someone else can give you a little more insight into what they might mean. Do you know if your neuro is planning to send you to a rheumatologist?

Hang in there and know that we are here for you. Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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Co-Moderator: Lupus and CFS Forums

Regular Member

Date Joined Jun 2006
Total Posts : 329
   Posted 6/5/2007 9:10 AM (GMT -6)   
Thanks for the welcome!

My neuro is waiting to see what the MS specialist wants to do. She mentioned sending me to a rheumatologist if the MS specialist is done with me. I should know something in the next few days I suppose. Thanks again for your help.
I not only use all the brains that I have, but all that I can borrow.
  Author: Woodrow Wilson (1856-1924), 28th U.S. President

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 6/6/2007 3:50 AM (GMT -6)   
Hi Denda, I just wanted to say welcome to the group. I'm sorry I didn't say hello eearlier. I havn't been around too much lately. As for the asterisks nets to your lab tests I won't say for sure. It's 3;30 in the morning and I don't have my labs in front of me but the ones I do know that have asterisk or out of the proper range. Such as your ANA has an asterisk and it is on the possitive side.which is one first sign of lupus. and your sedimentation rate (sed ) rate doesn't have an asterisk and it is 8 which is in the good range. So if I had to guess I would say that if it has a asterisk than is is not a normal result. Don't quote me on it but off the top of my head I would say that's what the foot note would be for.
anyway like I said it's the middle of the night so I hope that made some since
welcome again
God Bless
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , vicodin.5x3, Evista for osteo,. oxygen Plaquanil800mil, . effexor. spiriva, xopenex.
Come ye, all that are weary and heavy laden, and I will give you rest!

Regular Member

Date Joined Jun 2006
Total Posts : 329
   Posted 6/6/2007 7:29 AM (GMT -6)   
Thanks Okie -

Still waiting for my neuro to call and let me know where we go from here. I know she is waiting to talk to the MS spec and he is out of town until next week. I'll report back when I have any more info.

Thanks again to you all.
I not only use all the brains that I have, but all that I can borrow.
  Author: Woodrow Wilson (1856-1924), 28th U.S. President

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