Pos ANA, Bacterial Infection, Anemia, nephritis & Neg lupus tests!!!

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Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 12/17/2008 1:44 PM (GMT -7)   
Ok. I have spent months trying to figure what is going on with me and my symptoms. I just recently started a flare and told my pcp I wanted to do more blood work to see if anything has changed. So far Im anemic which wasnt corrected by the 4 months of iron supplements im still taking, my ana was postive, I have a bacterial infection and am leaking blood into my urine. I am still waiting for other tests results such as the rheumatoid factor etc...however the two lupus tests i had done, the anti-sm and double stranded dna were negative....just wanna know could this still be lupus or if i should look elsewhere, what could it be? where do i start? lol Im so confused and not ready for the holidays...hope everyone has a merry christmas and thank you :) Take care -Brit
*Wifey & Mommy*


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 12/17/2008 2:05 PM (GMT -7)   
Hey Brit, I'm sorry you are frustrated but look at it like this. You are in great company! Ok first I'm just gonna throw my thoughts out at ya and you can take it or leave it. In my humble opinion you should be seeing a rheumy not a pcp. you shouldn't have to tell the dr. what needs to be done all thought there is not a thing wrong with being aggressive about your health care. Also weather it be Lupus or somthing else it sounds like you still have some time of auto immune disease. Which is totally normal in as much as there are so many of them that can cause so many of the same symptoms as lupus. You really need to see a rheumy. I can not inficize this enough. Also a second opinion is always good. You didn't mention what your pcp said about the test. Also there are many tests for lupus and there is not a single one by itself that can rule in or rule it out. So yes even with the neg strans you could still have lupus, or scleraderma, or connective tissue, or pbc, or anything. That is why it is so hard to figure out. I have been trying for over 2 year years and I have a big fat goose egg for a dx so far.
you know a lot of times lupies and others can't always get things like iron supplements to break down in the blood stream. you may need shots. or some other alternative. Your anemia could be from the bleeding in your urine or even the C word causes anemia, also a vitamin difficiancy. Don'
t worry about the C word it's just a word and probably not anything to do with it. I hope the doctor is treating you for your infection or if you have fatique. most dr's will put you on plaquanil or prednazone in small doses. pain meds if nessessary. I hope your dr. is at least doing that much for you.
My suggestion is you could be waiting for years to get the right diagnosis. I have been diagnosed and undiagnosed and had 3 different rheumy's tell me 3 different things. Just take a deep breath and look at all you have to be thankful for. You have children and a hubby and it's christmas! Don't let this disease take away your joy. If you get tired rest, don't push yourself. that just makes flares worst and last longer. So does stress. When ever you can designate jobs don't be afraid to ask for help. At this point you may have people questioning if you are realy sick or not taking things serious. But that's ok. It's normal. It will take awhile but sooner or later they will except it.
Try to have a wonderful christmas with peace joy and love
I'm praying for ya
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, provigil 200mg spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
 By his Stripes we were healed.
 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 12/17/2008 2:47 PM (GMT -7)   
Welcome to the Lupus Forum!

I don't remember, have you seen the 4 of 11 criteria list yet? The lab tests really are not conclusive, lupus can occur without bloodwork - that's according to the rheumatology and lupus professional organizations -- you'd think more drs would know this! Check the link in my signature if you haven't seen this yet...

A PCP isn't really the best person to be diagnosing lupus - if you haven't already, consider seeing a rhuemotogist that deals with lupus pateins. Best way to find is to look at lupus.org, find the closest/local group by zip code, then contact them and ask what doctors in your area work with the group. That way you know the rheumy deals with AutoImmune issues.

Hope this works, bad brain fog today,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(8mg), Piroxicam, Xanax(as needed), Trazodone, Boniva(monthly), Wellbutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 12/17/2008 5:24 PM (GMT -7)   
Ty 4 the comfort. I saw a rheumy nov 12th who said i looked fine besides being double jointed which can cause more discomfort than in normal ppl. However i was not in a flare then but didnt realize it till after the appt when i noticed this flare which is the first time i noticed the beginning or end of any flare. So of course the tests done were neg. I was due to go back 6 months from the 12th. I will call & make a sooner appt then. Ty again. I will keep u informed & will look 4 another rheumy. Have a great christmas too!
*Wifey & Mommy*


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 12/17/2008 8:25 PM (GMT -7)   

Hey Brit, yes it is true that being double jointed can cause more problems I think you are on to somthing getting into a new rheumy. Like I mentioned before they just search for answers too. Here are a couple of suggestions for you. First if you swell or get a rash or anything out of the ordinary I mean anything at all. Take a picture of it. There is a good possibility it won't be there when you get into see the dr. when I first got sick my legs from knees to toes got so red it looked like second degree burns and my feet were so swellen they were bleeding. Things you think is nothing good mean one more peice to the puzzle. Do your finger tips get real cold.? do they turn colors? Do you get styes in your eyes do they feel like you have a rock in them? do you get little tiny red dots on your hands that you don't think much about? I am not saying you have any of these I am just giving you an example that you can't take anything for granted. document everything. Take your temp 4 times a day write it down. make a chart. is it high is it low? what were you doing at the time? Talk with your family try to find out anything your family might have including aunts and uncles cousins. Do you get sores in your mouth? cracked lips? There are just so many things that we are used to blowing off as it's just part of life when in face it could very well be something the doctor needs to know about.

ok anyway I just wanted to add that. If you have any questions please come here and ask away. somone will more than likely have an answer. If you just get frustrated come here. we all know that feeling. We are here for you and will be keeping you in our thoughts and prayers

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, provigil 200mg spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
 By his Stripes we were healed.
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 12/18/2008 8:56 AM (GMT -7)   
It sounds like you have quite a few symptoms and with your positive bloodwork, it might be a good idea to get back to the rheumy or maybe get a second opinion from a different one since the first rheumy didn' think much was wrong with you. There are no diffinintive tests for lupus, just the criteria that Lynnwood mentioned. You don't have to have a positive anti-sm or ds dna to have a lupus diagnosis. I don't have either of those things. It took me 3 years and 3 rheumies to get diagnosed and not all rheumies specialize in lupus. If there is a local lupus support group in your area it would be worth going to to ask other members about their doctors and maybe get a recommendation there.

With your anemia, it can be hard to get it to normal if you have a lot of inflammation. My son has juvenile arthritis and is always anemic and the docs said it is because of the inflammation and even iron supplements won't help much to get it back in the normal range.

It looks like you got some great advice and support from others here. Hang in there and know that we arehere for you.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 12/20/2008 11:54 AM (GMT -7)   
Hi there... thank you all for your replies :) I agree I should be seeing a rheumy. Besides the local I saw they are all about an hour away so im trying to pick a good one this time lol I realized I wasnt in a flare looking back which is why he said I was fine. I guess I cant blame him can I? lol Anyhow, heres the symptoms Im dealing with or have in the past:

-Seizures at age 15 with no known cause
-Premature birth of son at 34 weeks, water broke at 27
Current symptoms include:
-headaches(pressure)
-problems thinking and remembering
-cold hands and feet with color change(white, purple, red)
-ache in lower back and legs
-burning pain in lower back and stomach down into knees
-burning pain and skin redness occuring just below shoulders down into hands and on face in butterfly pattern and sometimes ears and chest
-sharp pains in joints and bones...random can be anywhere in the body
-mouth ulcers, painful ones (i had 3 bouts in a row of them for over a month straight before my pain in this flare started)
-allergy problems(was put on flonase and lortadine everyday..worked for 2 weeks now it seems to have stopped working)
-dry mouth sometimes in back of throat and tongue and dry eyes that burn but only sometimes
-shortness of breath
-nystagmus after seizures occured that has recently caused two episodes of vertigo with the eye twitching.(only lasted a few seconds both times)
-loss of appetite and some weight...like 5lbs or so..dont know if thats significant
-anemia
-fatigue
I also noticed weeks ago i got the split in the corner of my mouth but it was very slight and went away quick but i have gotten that before where it crusts over and is painful.
-chest pain
-nausea
-bowel movement irregularities..mostly constipation

I think that is it off the top of my head lol I notice every time I come to the library here my face turns red..im thinking its from the big fluorescent lights because I am also photosensitive. Any suggestions please let me know. & thanks again. Have a great holiday! -Brit
*Wifey & Mommy*

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