I don't understand

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ladybug44r
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Date Joined Jul 2006
Total Posts : 831
   Posted 6/7/2007 5:22 AM (GMT -7)   
 It took them 1 to do my tests. Said I was low in iron and everything else came back normal.
 
I don't feel normal. Low iron will not make temp go up and down. Will not make my body hurt. It will make me tired that I know.
 
Does any of this sound right?
 
Veronica

dbab
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Date Joined Jan 2004
Total Posts : 4151
   Posted 6/7/2007 5:56 AM (GMT -7)   
Veronica,

You mentioned rashes before. Have you thought about seeing a dermatologist? Many can look and possibly do a biopsy and tell you what type of rash it is. People with cutaneous Lupus (skin) can present with normal blood test results but the rash biopsies would reveal Lupus. What tests did they specifically do? My ANA is normal most of the time, but one of my ENAs (anti-Ro) is not and my inflamation levels are always high and now my liver enzymes are elevated as well as noticing some heart problems. These all kind of crept up on me. Some docs stop testing after the ANA comes back negative. If you know you don't feel right, push the doctors; only you know your body and what feels normal or not. But if your like me, you walk around for a few years thinking that everyone feels like you do and thinking thats normal and then come to find out that not everyone does in fact feel like you.

Take Care
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus 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


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hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 6/7/2007 6:28 AM (GMT -7)   
Veronica, it can be really frustrating when you feel so sick but all your labs come back normal. Like Des said, sometimes it can take a while for your labs to catch up with your illness. Initially I had a low positive ANA, but most other things looked normal in my labs. Then over the course of 2 years my inflammation markers went up, my liver function was elevated and I had protein in my urine.

Please don't give up looking for answers - something is going on with your body or, like you said, you wouldn't be getting fevers. So many of us have been in your shoes and know how frustrating it is. THe sad truth is that it took many of us years to get a diagnosis because of the tricky nature of these kinds of diseases.

Hang in there and 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

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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ladybug44r
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Date Joined Jul 2006
Total Posts : 831
   Posted 6/7/2007 6:31 AM (GMT -7)   
I know she said that she was going to do one on my liver and kidneys but the woman didn't say anything about those.
Shewas suppose to check for antiimmune but I'm not sure if she did. I'm not giving up cause like you all siad I know my body doesn't feel right.

Veronica

monkeyme
Regular Member


Date Joined Mar 2007
Total Posts : 153
   Posted 6/7/2007 7:31 AM (GMT -7)   
Just wanted to mention that I have been where you are right now SO many times. It is frustrating, its maddening.

Just hang in there. Treat yourself well. Rest. Eat healthy. Keep a journal of your symptoms.

To be honest with you, there is no real difference in my life pre and post diagnosis. I was diagnosed with UCTD several months ago, which has recently been upgraded to Lupus. I am attempting to tolerate some different meds, but the only thing that has really changed is the knowledge that there IS something wrong with me and its not all in my head.

Well you already know that fevers are not in your head. There is something wrong with you. It can take years and years to find out exactly what it is.

Perhaps you could see another physician? Get a second opinion?

I am sorry that you are going through this right now. I remember the frustration and the pulling my hair our very very well.

Hang in there, it will all work out.

darlene
Chronic Fatigue 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 6/7/2007 2:18 PM (GMT -7)   
((((((veronica)))))))), I'm sorry about the way the tests turned out. If you don't know if she tested for lupus you should call back ask if they did an ANA. That would be like the first thing they would do. Also tell them to mail you a copy of your tests. It doesn't matter if they are ok or not. At least you will have a copy of everything that has been done. Tests change all the time. Keep on your doctor. Don't give up.
Hang in there
hugs
carol
God Bless
Carol
 
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , vicodin.5x3, Evista for osteo,. oxygen Plaquanil800mil, . effexor. spiriva, xopenex. pred.10.mil.
 
Come ye, all that are weary and heavy laden, and I will give you rest!
 
 


ladybug44r
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Date Joined Jul 2006
Total Posts : 831
   Posted 6/7/2007 6:40 PM (GMT -7)   

She did do a Lupus test. Today I was cleaning and had temp go up. I am still going to watch and record my temp and how I"m feeling.

 

Thank you all for the help and understanding.

Veronica


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 6/7/2007 6:50 PM (GMT -7)   
Veronica,

My doc told me in the beginning to take my temp 3 times a day at the same times (morning, afternoon, evening) for 2 months to get a baseline temperature. That way you know what normal is for you. If you keep a temperature log, then you can take your temperature, record the time and record what activities you were doing within the hour before taking the temp. It really opened my eyes. I found out then that 98.6 temp is not one size fits all. Hope things get better for you. I'll be keeping you in my thoughts.
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus 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


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peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 6/8/2007 10:11 AM (GMT -7)   
Veronica....my suggestion. Have a Lyme test done (AT IGENEX ONLY) and rule that out also.
 

emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 6/8/2007 12:52 PM (GMT -7)   
Veronica,

Also remember that our body temps usually go up after physical activity. I sympathize with you. It is so, so, so frustrating when you feel so miserable and hurt so much yet have no "name" for why you are feeling so poorly. As others have said, many times our bodies are ahead of our labs. Then other times our labs might turn up looking lousy and we feel better than when our labs looked "good". One thing I know for certain is that there is no rhyme nor reason to autoimmune diseases.

In the meantime, take care of yourself. When taking care of your little ones, enjoy them, do what you need to be doing for their care and well-being and nothing else. Don't try to do too much at once. When your work day is done, rest before trying to do anything else. Then if your body can tolerate it, try a little something. If not, simply get ready for the next day. Eat well and sleep as well as you can. Keep us posted.

xoxo emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 6/8/2007 6:03 PM (GMT -7)   
Hi Veronica:

I'm sorry to hear that things are doing so poorly for you. I wanted to say welcome to HW and I'm looking forward to getting to know you more. Here's wishing that you begin to feel much better.

It can be normal for some lupus patients to have negative lab work. I can have positive labs some of the time, and totally other times have negative labs. I had a positive ANA at 1:180 and now my ANA is negative. My ESR and CRP is a good way of know if I've got a flare going on.

Here's wishing you the best with getting a formal DX for lupus. Please keep us up to date on how you are doing. I'm wishing you the best and you'll be in my prayers.

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


ladybug44r
Veteran Member


Date Joined Jul 2006
Total Posts : 831
   Posted 6/8/2007 7:15 PM (GMT -7)   
Peacesoul, can lyme disease also cause fevers fro no reason?

Veronica

peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 6/8/2007 7:24 PM (GMT -7)   
ladybug44r said...
Peacesoul, can lyme disease also cause fevers fro no reason?

Veronica
Lyme disease mimics lupus, ms, fibro etc. It's an aweful bacteria. Most ppl don't even know they have it until they get proper testing. It can also cause very severe fevers.
Go check out the Lyme forum.
Let me know what you find out.
 

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 6/9/2007 1:05 AM (GMT -7)   
Veronica,

All my labs usually come back normal- when my hands were so swollen they were like claws and all red and hot and my rheumy could feel swelling in the joint tissues my ESR and SED came back NORMAL. My liver tests are the only ones to ever really go nuts and those are okay so long as I am on Imuran. I do occassionally test positive for lupus anticoglutant or anti-cardiolipin antibodies but never really strongly so. Yet the best way to tell how my disease is doing is my joint tissues and cognative function along with occassional checks of my liver panel. Heck I have severe pitting edema but my kidney tests are all normal and my blood pressure is normal again- three or four times a year it goes high but 2-3 weeks on water pills and it is normal again. So blood work is definately not the end all be all. Actually my rheumy said blood work is unreliable heck my hubby had a positive ANA 1:160 then 2 weeks later it was negative the positive was when his hands were swollen and red and warm. The negative was when the swelling was almost gone, the reddness was gone and the warmth was gone. Blood work changes from day to day and hour to hour. I actually had a negative pregnancy test when I was 4 months pregnant once in the ER and I had to make them list to the baby's heart to make them believe I was pregnant.

Most blood work is done the same way it has been for at least 40 years just faster and by machines most of the time. Humans would catch things machines miss but they are too slow and expensive so most blood work is run by machines. All the research into blood work is how to make the results come faster and cost less to produce not how to make it more accurate or reliable. Funny huh? Some things machines do better than humans but heck if it is testing for one thing and something else is wrong with the blood it doesn't care you only get the results for that one test. A human would call attention to the other problem as well as giving results for the ordered test. Profit and the almighty dollar have really hurt us in health care especially women and most especially autoimmune patients because no one tries to find better more reliable tests.
Dx:fibromyalgia 2002, systematic lupus 2005, psoriasis 2006, rheumetoid arthritis 2006, early sjogrens 2006, low positive anti-phospholipid antibodies/lupus anti-coglutant 2001-2004 and 2007, osteoarthritis 2005, Migraine 1994, Compression fracture 2001, Disk problems 2006, Multiple allergies 2006, Post traumatic stress disorder (PTSD) 2007, Bipolar type II 2007, possible siezures 2005, probable lupus CNS involvement 2007

Tx: plaquenil, Imuran, Enbrel, Celebrex, Tramadol, Norco, Singulair, Skelaxin, Evoxac, Clonazepam, Zonisamide, Baby Asprin, Relpax, Copper IUD

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