Could it be Lupus?

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Neurogurl
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Date Joined Dec 2006
Total Posts : 373
   Posted 4/14/2007 6:29 AM (GMT -7)   
Hello
 
Im wondering if someone could help me with a couple of questions...
 
I guess my main 2 questions are:  1. Can someone have Lupus w/o the usual symptoms   2. Can a healthy person have low level of ANA and Antiphospholipids without it being Lupus??
 
My symptoms are as follows:
Visual disturbances (sparkles, trails, light flashes, afterimages, floaters, blurred vision)
headaches
Lightheaded/dizzy
neck pain/back pain
 
 
Does this sound like Lupus?? I have a positive ANA at 1:80 and a low level of Antiphospholipids. Doctor put me on Baby aspirin a day. I am Factor V positive hetero (genetic clotting disorder)  Someone please help..

hippimom2
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Date Joined Jul 2005
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   Posted 4/14/2007 6:57 AM (GMT -7)   
Neurogirl, I don't know if I can give you a definite answer to your questions. One thing I have read is that some healthy people can have a low positive ANA, but if you have a positive ANA and have symptoms then a doc should be looking into things for you. Also a positive ANA can indicate other illnesses aside from lupus like Rheumatoid Arthritis, scleroderma, myositis, polymyositis, autoimmune thyroid disease, and I know there are some others that I haven't listed. I'm not sure about the low level of Antiphospholipids.

I do know that lupus can be a very slow progressing disease for some people and it can take years to develop. It is possible you could be in the early stages of it with some vague symptoms. You can click on the resources in my signature and it will take you to a page where you can look at the diagnostic criteria for lupus (you have to have 4 of the 11 symptoms to get a diagnosis).

If you are thinking you might have lupus, you can ask for a referal for a rheumatologist since they are the ones who diagnose and treat lupus. I also think it's a good idea to keep a list of your symptoms and make sure you get checked if any new symptoms occur.

I wish I could be more specific in my answers, but lupus is a very tricky disease and can sometimes take many frustrating years to get diagnosed since there is no specific blood test for it. We call it the great imitator and the disease of a thousand faces.

I'm hoping that you will get some help with your symptoms soon and that a doctor can help you figure out what is causing them. Please let us know if you have any other questions.

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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Neurogurl
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Date Joined Dec 2006
Total Posts : 373
   Posted 4/14/2007 11:05 AM (GMT -7)   
Hippimom:

Thank you soo much. Why does one get Lupus. Lets just say I do have it...was it something I did wrong? Could I have prevented it??

Neurogurl

Barbara Lee
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Date Joined Sep 2003
Total Posts : 2889
   Posted 4/14/2007 11:25 AM (GMT -7)   
Hi Neurogirl:

First off I like to say I'm sry to hear that you're having these symptoms and feeling bad. The researchers that study lupus, can not say 100% what causes it. Sometimes an illness can trigger it, medications can cause drug induced lupus, there's the possiblity it's inherited in families. They really just don't know. Hippi gave you very good advice and information. I've had lupus since I was 23 but I didn't get an official DX until I was 36 yrs old. Your ANA is the same as mine. Whereas, my daughter's ANA is 1:640 and she has no signs of lupus. People can have a positive ANA and not have a single thing wrong with them. We've been following my daughter since she was 5 yrs old, her ANA stays positive it never changes. The Peds Rheumy said that each year she goes w/o symptoms of lupus the better.

Lupus is a tough and tricky disease to dx, you may have to wait for symptoms to appear before you can meet the requirement for 4 out of 11 symptoms needed for a dx. That's what happened with me, my symptoms started out slow and like I said it took them forever to officially say, "yes you have lupus". You didn't do anything to cause it if you have lupus. It just happens, I hope that you can see a rheumy soon and get some answers. Hang in there and don't give up.

Take Care,

Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.


Neurogurl
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Date Joined Dec 2006
Total Posts : 373
   Posted 4/14/2007 12:27 PM (GMT -7)   
Thanks Barbara!

Can I ask you what are your symptoms?

Barbara Lee
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Date Joined Sep 2003
Total Posts : 2889
   Posted 4/14/2007 12:46 PM (GMT -7)   
Hi Nuro:

When I first started having issues when I was 23, I had rashes on my face, joints, legs and arms. I broke out in a rash as soon as I came in from the sun. I ran low grade fevers and suffered from fatigue and joint pain. As the years passed I suffered with pericarditis (fluid around the heart), pleurisy (inflammation of the lining of the lung), I had troubles with low platelets, anemia, I had low C3 and C4 panels. I had a double stranded DNA come back positive, a positive ANA on and off over time. My CH50 was very very low, and only lupus patients test positive for this. I spilled protein in my urine, I had bowel issues all the time, headaches, and forgetfullness.

When I was dx'd in 2001, I was started on prednisone to help with my joint pain. I'm still on prednisone, and my disease is worsening everyday. I've long forgotten what remission is like. Of course I've got an additional problem and disease. I truly believe that my MDS and lupus are feedingl off of each other. I know I need to stay positive and have hope, but I don't. My MDS is going to get worse and I'll get sicker, this is a known fact. My doctors are uncertain what my lupus is going to do.

Hope that helps some.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.


Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 4/14/2007 7:23 PM (GMT -7)   
Barbara thank you for all of this. If you don't mind, could you tell me how old you are now. And also, is anemia usually associated with Lupus? Did you have the blood cancer before or after the Lupus diagnosis? Im sorry to ask all of these questions, im trying to learn as much as possible about other peoples experiences/symptoms etc. I feel more knowledge I get from people who actually have Lupus the more I can take with me to the doctors. I almost had to convince the docs to test me for ANA's at one point. For the longest time they kept telling me "its all your head" and to see a therapist. Its so sad for me because I just know my body and I know something isn't right. I had gone back to the doctor begging them to help me. Then finally I found a doc who ran blood tests and started to find ANA's and Antiphospholipids which are both associated with Lupus.
Thanks so much for your help.

PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 4/14/2007 8:34 PM (GMT -7)   
Hi, Neurogirl, and welcome to the forum. Hippi and Barbara gave you some very good information. For more specific information on lupus and anemia, lupus and antiphospholipis, and much more, go to the websites hippi has in her post. The first one is the one I'm most familiar with - by the Lupus Foundation of America.

Lupus, as you have already figured out, is usually a hard disease to diagnose and most of us have gone for many years with symptoms prior to getting a diagnosis. And many of us were treated as though it was "all in our heads." We just listened to our bodies and didn't give up. You'll find a list of symptoms in both sites. My worst symptoms are joint pain and extreme fatigue. If I spend any time in the sun, I'll go into a flare, and I'll bet nearly all lupus patients finally learn to stay out of the sun.

I agree with Barbara that making an appointment with a good rheumatologist is the first place to start.

From your name and number of posts, am I correcty in assuming that you're in the Neurology forum? Tell us more about you. You'll find lots of helpful and knowledgeable people here who are very willing to listen and help. Good luck, and hope to see you again soon.

Pat
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


Barbara Lee
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Date Joined Sep 2003
Total Posts : 2889
   Posted 4/14/2007 9:00 PM (GMT -7)   
Hi Neurogirl:

I'm 42 yrs old, I started with symptoms very early in my life, but couldn't pin point a specific disease I had until I was 36 yrs old. I have very few memories of my early childhood, but my brother and sister said I was a very sickly child. So, it may be possible that I was showing signs in my early teens.

Yes, anemia, and low platelets can be caused by lupus. I didn't have my blood cancer prior to getting my diagnosis. I did have fibromyalgia before getting my diagnosis of lupus in 2001. I heard that it was "all in my head" many times over the years. My doctor thinks that part of the reason I have blood cancer is because I took cytoxan orally for 9 months, and then had 3 iv infusions of the cytoxan. They think the chemotherapy drug is what caused me to have the blood cancer, but it can't be proven.

Yes, the ANA and Antiphospholipid, can be associated with lupus. The ANA can be positive on a person that doesn't have lupus. The Antiphospholipid can be related to your lupus, or you may have this w/o having lupus. I hope that your doctor can get to the bottom of this all. I understand how frustrated you arel with everything. My ANA was positive at 1:80, which is barely a positive ANA. So my doctors would dismiss the ANA test. Neurogurl don't give up, you're correct you know your body better than anyone. I'm wishing you well with solving what's happening with your body, and that they get you on a good treatment plan soon.

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


Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 4/16/2007 5:16 PM (GMT -7)   
Thanks girls!! CAn I ask if any of you have visual disturbances with Lupus. That is my very first symptom, along with headaches, lightheaded, dizziness and zap feeling once in a while in my body. The vision is so wierd though. I get sparkles, zig zags, trails, afterimages, purple swirlies, light flashes and more :(

I am usually in the neurology forum and heart one too.

Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 4/17/2007 5:04 AM (GMT -7)   
Anyone here with lupus and wierd visual problems??

PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 4/17/2007 8:38 AM (GMT -7)   
Hi Neurogirl,

I haven't had any of the symptoms you describe. Well, except for the rare times that I have a migrane headache, and isn't that a neurological problem? I haven't seen anyone else on this forum talk about the symptoms you describe, and I'll be curious to see what others have to say.

I do know how frustrating it is to have symptoms without a diagnosis. Hope you get some answers soon.

Pat
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


Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 4/17/2007 4:36 PM (GMT -7)   
Thanks Pat. Well yes the doctors do tell me that migraine is a neurological disorder. I have had 2 mri's of my brain and completely normal. The wierd thing is I have this everyday and Im not sure you can have a migraine everyday

dbab
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Date Joined Jan 2004
Total Posts : 4151
   Posted 4/17/2007 4:40 PM (GMT -7)   
I get the headaches, dizziness, and neck pains also!! Sometimes I do get those floaters but not necessarily all the time. My doc chalked it up to AP disorder but it happens with OR without panic for me (I do have AP disorder but think these are not necessarily related). I can't find any doctor to take it seriously and it can be debilitating especially with the dizziness is full force. I hope you get some answers... I also may just have to keep bugging my docs about this.

Take Care
"Des"
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, Xanax XR 2mg, Miralax 17g, Supplements


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Neurogurl
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Date Joined Dec 2006
Total Posts : 373
   Posted 4/18/2007 6:33 AM (GMT -7)   
HI Girls..thanks again. Des, what do you mean by AP disorder. Is that anxiety disorder? Im sorry I just don't know what AP stands for. I definately to have anxiety!

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 4/18/2007 6:35 AM (GMT -7)   
Yes, I apologize... AP stands for Anxiety Panic. When I get anxiety or panic episodes than I usually will get a jolt of adrenaline but I don't always get it with these symptoms so I'm not sure.

Take Care


"Des"
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, Xanax XR 2mg, Miralax 17g, Supplements


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Neurogurl
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Date Joined Dec 2006
Total Posts : 373
   Posted 4/18/2007 9:38 AM (GMT -7)   
Hi Des, could you tell me what it feels like for you when your having a panic attack

dbab
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Date Joined Jan 2004
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   Posted 4/18/2007 9:51 AM (GMT -7)   
Every one is different but for me... I get this rush of adrenaline and I get very lightheaded. My heart rate goes up although I don't get chest pain with them (some people do). I get dizzy and my focus is off and concentration is hard. I kind of go into a derealization state, I am aware of whats going on around me however everything is really fuzzy. This is what happens and my docs say its a panic attack although meds (was Xanax, now Klonopin) doesn't completely help. Hope this helps some.
"Des"
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, Xanax XR 2mg, Miralax 17g, Supplements


http://www.healingwell.com/donate


dbab
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Date Joined Jan 2004
Total Posts : 4151
   Posted 4/18/2007 10:02 AM (GMT -7)   
I also wanted to add that I sometimes get jerks with them. Not sure why but these are subtle movements like zaps muscle twitches.


"Des"
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, Xanax XR 2mg, Miralax 17g, Supplements


http://www.healingwell.com/donate

Post Edited (dbab) : 4/18/2007 11:06:20 AM (GMT-6)


sandspoker
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Date Joined Apr 2007
Total Posts : 104
   Posted 4/18/2007 9:29 PM (GMT -7)   
I have no balance from time to time

Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 4/19/2007 8:27 AM (GMT -7)   
Ok, that is exactly how I feel. Are we sure that its a panic attack cuz sometimes I get those feelings when Im not feeling so anxious.

dbab
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Date Joined Jan 2004
Total Posts : 4151
   Posted 4/19/2007 11:21 AM (GMT -7)   
I explained this to some people somewhere else because my next guess is that it could be something else because like you, I get them with no panic or anxiousness and there doesn't seem to be any trigger (except I get them more in bright or flourescent light) and I was told that I may want to check with a neurologist so I may just do that. I always pause though because I always hate to go somewhere and feel like an idiot, I know I need to get over that though.
"Des"
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, Xanax XR 2mg, Miralax 17g, Supplements


http://www.healingwell.com/donate


Kandi
New Member


Date Joined Nov 2005
Total Posts : 7
   Posted 6/14/2009 11:06 PM (GMT -7)   
Have you considered the possibility of MS?  I know you said you have had MRIs but those don't always show positive with MS.  I only ask because I am currently being screened for MS and just had my MRI on Friday and I am familiar with the symptoms you are speaking of.
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