Negative blood work while having symptoms

General
1

Hi everyone!

I recently started having swelling and joint pain. Specifically my left foot swelled up massively with horrible pains in my toes. I went to my doctor and they said that it was gout. They gave me meds for gout. It helped for a couple days, but it returned with a vengeance. I went back to the doctor because of the Tramadol they had me on for pain. It was interacting with my Zoloft. This is when my doctor started mentioning Lupus. He ran blood work ANA and 2 other Lupus tests. Also ran a test for Sjogren's. Everything came back negative. My C-Reactive Protein and White Blood Count came back elevated. He has referred me to a Rheumatologist.

I also started to notice the Butterfly rash on my face. I am constantly tired. My joints hurt i.e. toes, ankles, knees, fingers. I take Zoloft for my anxiety. My hair has always fallen out, but now it's bad.... I live in AZ so when I am outside I turn red within 10 minutes of sunshine. I also have been diagnosed with Poly-Cystic Ovarian Syndrome. I take Metformin 1000 mg twice a day and I am on Spirolactone 50 mg twice a day. I am in the process of changing my birth control pill. I think that my Ortho Tri-Cyclen isn't working as well as it should, could the possible Lupus be the cause for my hormonal issues such as having 2 full periods in one month?

My mom says that I am tinkering with my body and I don't feel like I am. I know that there is something wrong and I just don't know what.... Any help is appreciated.

Thanks!!

2

AZButterfly,

GET A SECOND OPINION, ASAP!!!!! I am ANA negative was told, quite frankly, that had my Nephrologist not continued looking and finally ordering a kidney biopsy, I might have gone another 15 years without diagnosis. My diagnosis, Stage 4 Nephritis, Class III & V Lupus...advanced. I know other doctors suspected, especially when outputting a ton of protein. 13,000 times normal. Had I been diagnosed earlier, I am convinced I would not be at the stage I am with the Nephritis (yes, that is one of the more fatal complications).

The symptoms I had:

3 bouts of Pneumonia so severe I was in ICU and at one time on a ventilator (something I don't recommend)

COPD & Chronic Bronchitis & Laryngitis

Chronic Headaches

Fatigue

Not so much swelling in the joints, but painful

Swelling, itching, pins & needles in feet (very common)

Mood swings

Vision problems

Uncontrolled High BP

A LOT of fog and forgetfulness

That's just to name a few, but if you have any of those, ask for a kidney biopsy (if your BP is high) or find out what other tests can be done if your kidneys are not being affected.

Please, please get a second opinion.

Best of Luck,

DeAnne

3

It sounds like you are going through what I have been battling for a year and a half now. I have had symptoms for 15ish years steadily getting worse. I say down and studiedly medical records dating back to when I was 10 (and I mean blood work, office notes, everything) and brought a detailed list of stuff to my doctor. He sent me to a neurologist and Gastro for a bunch of tests, then to a cardiologist. Many of these tests came back showing high/low numbers that point towards lupus, but in 18 months (and 18 ANA tests) I have had 0 positive for lupus. My doctors believe that it is Lupus but won’t diagnose without a positive. I have had many people tell me that they didn’t get a positive during a flare, it only came during remission which is why I am getting the blood work done every month (2 days til my next set). Just hang in there and be persistant. I would recommend keeping a log of symptoms, as well as the weather, recent meals, and what you are doing when the symptoms start. All those things can be triggering a flare.
But most important, KEEP THAT BEAUTIFUL SMILE ON YOUR FACE! We are in this together, this site is amazing! Come here to vent and to share good things, and know that everyone on here is going through basically the same thing.

4

with white count high means you have some kind of infection going on. With SLE at least with me and it...my white count is low sometimes way too low where i not suppose go in public since i could get infection etc easily.

It could be gout and just you need a different drug as well did he adjust your diet? But things many people hate is ANA and other test bounce in and out of being positive or negative. like jason said. I also had biospy..he and i are lucky ones in way that we had something to biospy.

BUT there are 80 at least auto immune diseases out there....so you could have them or you could have RA, rheumatoid arthritis in your feet...i do and yep you swell up and my toes are all messed up..but i still walk etc...you got to keep moving.

Since you have not seen rheum wait and see what he says. As to rash you are wearing sun screen and hats i would hope. Some people who are fair do get red butterfly rash is pretty specific and not just red skin...

No i serously doubt the lupus has anything to do with hormonal. That is largest thing people have to learn that if you get a disease that you still have more than can go wrong...it is not cause of all .sadly might be easier if that was true.

Also in my book....no news is good news...except like Jason where clearly he was having kidney issues ....i had same problem had kidney problems where they did not know what was causing it and later said it was lupus.

with lupus you need to watch top number as Jason knows...that can be indicator of your kidneys failing but most people that i know with SLE do not have high BP. IT goes higher when we are in lot of pain....but you are on Tramadol which is moderate pain. I try motrin..but ask first since it might interfere with one of your other drugs...but it helps with inflammation unlike Tramadol and one of best pain relievers i think.

Oh you are having break through on your bc pills...you should call ob immediately clearly either that is too low a dose...you should not have full two periods on bc pills plus it might not be fully protecting you. So call your ob gyn ..whom ever prescribed those..hope it was ob gyn and have them either put you on higher or make sure all is okay with you.

As to your hair, is your hairdresser noticing it enough to say you should see a doctor about it? Plus hormones do cause your hair to fall out....typical in women going through meno pause so one more reason to see your OB.

I hope that your swollen foot was just gout...i do not wish lupus or any illness on anyone. Not fun being sick all your life , limits you in many ways such as just having children or can you take of one since you are too sick to even work.

So i hope it works out that possibly the Tramadol as it has some strange side effects i recall reading few people on it talking about that...caused neck pain or some joint pain some where. sorry was while ago. But really hope you are well and going to see the rheum is right direction so your doctor did not at least waste months with him trying to figure it out. That is good he moved you up asap! i really hope you are well ...but get in to your ob too!!

SLE is very different how each person gets it. My symptoms are more classic than like Vegas

I literally had all signs oh and as to rash....your doctor will notice it if it...i remember my doctor asking me about my cheeks and if they often were like that...this was many years ago before anyone knew about lupus...i got very lucky with extremely smart internist who thought to look for it...when other doctors had no clue about it. I really hope all goes well ...that you hair is okay and just the hormones...might even be the bc pills who or stress.....i really hope all comes out with it all being minor easy to fix things. good luck

5

I would have to ask you if your drinking Diet Soda??? I was and every month I would have these horrible epidsodes and I was reading that Aspartame has these side effect that cause Lupus and many more problems. Try if your drinking diet soda to stop drinking it and see if any of these syptoms go away..

6

Sometimes it is better to treat signs and symptoms and lab values and not have a diagnosis of lupus on medical records. I had first episode in 1992 with a white blood cou t of inky 300. I was admitted to isolation and given IV steroids. So until 2000 I would just attempt to stay one step ahead of ugly disease. But when ANA tripled I began treatment for lupus specifically. I am an RN and now on disabiity. And my husband was just recently forced to enter management in his position so he will retire with no health insurance for us. And with the actual diagnosis of LUPUS on records no one wants to insure me. So the delimma of him being able to retire after 33 years of swing shift!

7

Where do I start??? Wow, lots of issues I am reading. Rara, if you are on a disability you shouldn't have to worry about other insurance. You have medicare, right? I have everything covered by medicare with no problems so far. I don't know you or your husbands ages but medicare should cover your husband too when he choses retirement.

I have had two doctors tell me that 80% of lupus patients never get a positive ANA test. One told me the same holds true with RA. He thinks I have that too even though I so far have no manifestation of RA. My last blood test did not show that I have lupus but others do. Finding the right doctor is the biggest challenge we have, quite often.

Diet soda or aspartame is a huge problem. I had bells palsy in 2000. I had many, many episodes of it until I stopped drinking Diet sodas. After being off of them for several months I grabbed one and my DIL and I left to go shopping. As I was driving my face started contorting again and that is when it hit me that the artificial sweetner was giving me the symptoms of bell's palsy. I won't say it caused it but it definitely would trigger it again. I informed my neurologist and he was very grateful that I told him and said that he was going to delve into that with other patients. Read more about it and what it has caused for others.

Good luck to everyone. I am amazed at the stories I reed here. I've always felt so alone with everything but now I see how bad it can get. I knew this but I never encountered it until I joined this group.

8

I have to be on disability for 2 years before Medicare will be effective. I will be 60 next month and my husband is 61. So he has 4 more years before he will be eligible for Medicare. We are just taking it one day at s time. I sit in rheumotologist’s office as I read these post. Stay tough everyone. One day at a time.

9

Yes, I had to wait 2 years also but I had already been covered under my husbands plan so I was okay. And now your husband falls under the new rules so he can't get medicare at 62 either. I am 65 and hubby is 68 so we are okay. Hang in there Rara! Nothing is easy these days.

10

You are so right. Just one day at a time. Take care

11

I believe that the butterfly rash is always an indicator of Lupus. That is the face mask the disease was named for. Because it is the shape of the mask one sees on a wolf. Around the eyes, etc. I am SO sorry you are having these symptoms! Have you tried Vitamin D3, 5000 mgs? I swear that alone has helped me tremendously! I even survived a 5 day "must move" scenario, when we lost our house. I didn't think I would. Your mom might be partially right. If you can, you should also take vitamins that are for propping up the immune system. All drugs have side effects, because they are designed to suppress symptoms, and don't do anything to balance your body. Since the body is a living organism, it needs life and living things to support it.

12

Jason,

If you have consistently high BP or high protein output, your kidneys ARE being affected. Ask to see a Nephrologist. I had and have seen every other kind of doctor around. It is amazing that this is the doctor that found it. Like the others, he suspected but the blood work ALWAYS negative.

Hope that you feel better soon,

Hugs,

DeAnne

jason092088 said:

It sounds like you are going through what I have been battling for a year and a half now. I have had symptoms for 15ish years steadily getting worse. I say down and studiedly medical records dating back to when I was 10 (and I mean blood work, office notes, everything) and brought a detailed list of stuff to my doctor. He sent me to a neurologist and Gastro for a bunch of tests, then to a cardiologist. Many of these tests came back showing high/low numbers that point towards lupus, but in 18 months (and 18 ANA tests) I have had 0 positive for lupus. My doctors believe that it is Lupus but won't diagnose without a positive. I have had many people tell me that they didn't get a positive during a flare, it only came during remission which is why I am getting the blood work done every month (2 days til my next set). Just hang in there and be persistant. I would recommend keeping a log of symptoms, as well as the weather, recent meals, and what you are doing when the symptoms start. All those things can be triggering a flare.
But most important, KEEP THAT BEAUTIFUL SMILE ON YOUR FACE! We are in this together, this site is amazing! Come here to vent and to share good things, and know that everyone on here is going through basically the same thing.
13

I agree with you Sis,

Everyone is different and their symptoms are different. I don't have the "classic" symptoms which made diagnosis difficult. I am very lucky in the my Rhuemy is SO well informed. I didn't "think" I had the rash, but like you, it was noticed by someone with far more knowledge than I had.

I, also, agree it would be so much easier it Lupus was the answer for everything. The reason I get so concerened with high protein count is that I hope no one finally gets a diagnosis, only too late to really do anything to reverse or impede the damage to their organs. Lungs, liver, kidney, heart, brain. I also forgot to mention that the time I was diagnosed was after 2 TIA's, stroke and surgery on my carotid artery. I was 44. Talk about scary.

I hope everyone learns from those that have had difficulty getting a diagnosis and learn to be proactive...after all it is your health and your life.

Hugs,

DeAnne

siskiyousis said:

with white count high means you have some kind of infection going on. With SLE at least with me and it...my white count is low sometimes way too low where i not suppose go in public since i could get infection etc easily.

It could be gout and just you need a different drug as well did he adjust your diet? But things many people hate is ANA and other test bounce in and out of being positive or negative. like jason said. I also had biospy..he and i are lucky ones in way that we had something to biospy.

BUT there are 80 at least auto immune diseases out there....so you could have them or you could have RA, rheumatoid arthritis in your feet...i do and yep you swell up and my toes are all messed up..but i still walk etc...you got to keep moving.

Since you have not seen rheum wait and see what he says. As to rash you are wearing sun screen and hats i would hope. Some people who are fair do get red butterfly rash is pretty specific and not just red skin...

No i serously doubt the lupus has anything to do with hormonal. That is largest thing people have to learn that if you get a disease that you still have more than can go wrong...it is not cause of all .sadly might be easier if that was true.

Also in my book....no news is good news...except like Jason where clearly he was having kidney issues ....i had same problem had kidney problems where they did not know what was causing it and later said it was lupus.

with lupus you need to watch top number as Jason knows...that can be indicator of your kidneys failing but most people that i know with SLE do not have high BP. IT goes higher when we are in lot of pain....but you are on Tramadol which is moderate pain. I try motrin..but ask first since it might interfere with one of your other drugs...but it helps with inflammation unlike Tramadol and one of best pain relievers i think.

Oh you are having break through on your bc pills...you should call ob immediately clearly either that is too low a dose...you should not have full two periods on bc pills plus it might not be fully protecting you. So call your ob gyn ..whom ever prescribed those..hope it was ob gyn and have them either put you on higher or make sure all is okay with you.

As to your hair, is your hairdresser noticing it enough to say you should see a doctor about it? Plus hormones do cause your hair to fall out....typical in women going through meno pause so one more reason to see your OB.

I hope that your swollen foot was just gout...i do not wish lupus or any illness on anyone. Not fun being sick all your life , limits you in many ways such as just having children or can you take of one since you are too sick to even work.

So i hope it works out that possibly the Tramadol as it has some strange side effects i recall reading few people on it talking about that...caused neck pain or some joint pain some where. sorry was while ago. But really hope you are well and going to see the rheum is right direction so your doctor did not at least waste months with him trying to figure it out. That is good he moved you up asap! i really hope you are well ...but get in to your ob too!!

SLE is very different how each person gets it. My symptoms are more classic than like Vegas

I literally had all signs oh and as to rash....your doctor will notice it if it...i remember my doctor asking me about my cheeks and if they often were like that...this was many years ago before anyone knew about lupus...i got very lucky with extremely smart internist who thought to look for it...when other doctors had no clue about it. I really hope all goes well ...that you hair is okay and just the hormones...might even be the bc pills who or stress.....i really hope all comes out with it all being minor easy to fix things. good luck

14

Reet,

I am so glad that you have limited symptoms and that you are aware of what may be causing them. Knowledge is power.

Stay healthy and positive,

XOXO,

DeAnne

reet said:

Where do I start??? Wow, lots of issues I am reading. Rara, if you are on a disability you shouldn't have to worry about other insurance. You have medicare, right? I have everything covered by medicare with no problems so far. I don't know you or your husbands ages but medicare should cover your husband too when he choses retirement.

I have had two doctors tell me that 80% of lupus patients never get a positive ANA test. One told me the same holds true with RA. He thinks I have that too even though I so far have no manifestation of RA. My last blood test did not show that I have lupus but others do. Finding the right doctor is the biggest challenge we have, quite often.

Diet soda or aspartame is a huge problem. I had bells palsy in 2000. I had many, many episodes of it until I stopped drinking Diet sodas. After being off of them for several months I grabbed one and my DIL and I left to go shopping. As I was driving my face started contorting again and that is when it hit me that the artificial sweetner was giving me the symptoms of bell's palsy. I won't say it caused it but it definitely would trigger it again. I informed my neurologist and he was very grateful that I told him and said that he was going to delve into that with other patients. Read more about it and what it has caused for others.

Good luck to everyone. I am amazed at the stories I reed here. I've always felt so alone with everything but now I see how bad it can get. I knew this but I never encountered it until I joined this group.

15

Thank you all so very much!!! I have an appointment with my OB this Saturday to change my birth control pills. Of course I have to see them so they can do the pregnancy test to make sure I can switch. (the boyfriend would be a wreck if I was). After researching aspartame I am going to cut out the little bit of diet soda I drink. I called and made an appointment to see the Rheumatologist and the soonest they can get me in is April 30th.

One of the tests that was also done was for RA and it came back negative as well. Also the labs done on my kidneys and liver came back normal. The doc did mention that my WBC is consistently high. At one point my liver enzymes were elevated but I am guessing that they are within normal range now.

My mom doesn't believe in ever seeing the doctor, so I try not to listen to her so much.... My dad and boyfriend are very supportive. Hopefully it is just the aspartame!!

16

Hmm. Hope you're not, either, if you don't want to be!

When I was younger, about 32 or 33, I think, my WBC was way weird. We're talking long enough ago that I can't remember which way it was, but the Dr was flummoxed. Well, now I know I had Lupus. Just wish I had known way before 2005. I might have been able to hold many more of the symptoms at bay, rather than going thru everything I had to.