New here... Got a few questions..

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.

 

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.

                                                                Babs

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?

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.

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.

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.