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Old 01-25-2010, 07:36 AM   #1
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confused725 HB User
Help Me! Please! All this bloodwork....

Hi,

I hope someone can jump in here. Thank you in advance!

Last year out of NOWHERE I began having horrible muscle/joint pain. EVERY muscle! Calves, thighs, lower AND upper arms, shoulders, neck. ALL joints, Fingers, wrists, feet & ankles. If I poked myself on my body it hurt! Crossing my legs hurt! The pain lasted 3 months, Intensity changing but not going away until after 3 months.

Tired
This time I had a week of low grade fevers 98.7-99.8
Brain fog (But feel Ive had this for some time)

No other symptoms that I can think of

My Dr ran all bloodwork which was negative.

ANA
ESR
DNA
SSA
SSB
Western Blot
PT
PTT
Cardiolipins igg/igm
Aldolase
Ck
RF
Lyme
Mono
Cardio CRP
CBC w/ differential

I saw a Rhematologist ... said all the bloodwork was normal, did not suspect lupus or Fibro. Thought it was possibly from being on Crestor. I had stopped the Crestor at the onset of this muscle/joint pain 3 months earlier. My Cardiologist at the time said he DID NOT think it was Crestor because after I stopped it, I still had pain for 3 months (A long time in his opinion to be as bad as I was w/ the pain). Besides, the pain did not diminish daily. It just changed intensity. One day AWFUL, One day tolerable, the next not so bad, then HORRIBLE, ect....

The Musclepain got so bad I went to the City to be checked for ALS.


(After 5 months, when I was 2 months Pain free, I went back on Crestor) It is for choloesterol.

Ive been back on it for 9 mo's. January 10th (Nine months after starting the medicine again) I AM back with HORRIBLE Muscle/joint pain! Same exact thing.
My cardiologist, again DOES NOT think its the Crestor. After all 9 months, I was fine. I have stopped it & went to a Rhematologist here in NY who does research for Lupus & spent an extensive amount of time w/ me.
She repeated the EXACT same bloodwork & feels its not Lupus.

When I questioned her about last years episode, appearing to be a flare, then 9 month remission & now again, a possible flare.........She explained that it is REMOTELY possible but nearly impossible for SOMETHING would likely have shown up on the blood.

I asked if possible symptoms are here before the bloodwork & she says in most of her research, its opposite. The ANA, ect will actually be possitive before, even years before.

HELP! Please! Your thoughts are priceless!

Would I have other symptoms?

Does lupus cause this type of Muscle pain or just joint pain?

Has enough bloodwork been done to eliminate Lupus?

For those of you who were not Diagnosed right away, is that because only partial bloodwork was done, IE: ANA but no SSA/SSB, ect?



Bless you all! Thank you for taking the time to read!
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Rachel

Last edited by confused725; 01-26-2010 at 07:18 PM.

 
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Old 01-25-2010, 11:46 AM   #2
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Re: Help Me! Please! All this bloodwork....

Can I ask why they ruled out Fibro? Also if you look up crestor side effects it does list muscle pain as being one of them.

Last edited by kdel; 01-25-2010 at 11:48 AM. Reason: added something

 
Old 01-25-2010, 12:53 PM   #3
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Re: Help Me! Please! All this bloodwork....

Hi. I know three people who reacted badly to cholesterol meds. One got what could have been myositis or drug-incuded lupus (DILE): her rheumie never decided which, for sure. After she stopped the drug, she went back to normal. (She had elevated ESR, positive anti-histone, positive ANA, and positive findings on muscle biopsy.)

The other's rheumie is still trying to determine what's going on.

The third, an older woman, decided, with her drs. OK, just to quit the drug. Don't think tests were ever run. Her muscle & joint pain abated.

I think I've read that cholesterol meds can cause DILE. But without markers of some sort, as your rheumie said, maybe it IS just severe muscle & joint pain, especially if those are known possible side effects? (Hmmmmm....) I'm pretty sure I read in the paper, sometime in the last year, that maybe 15% of people on cholesterol drugs get a pain reaction. Maybe your rheumie could look up recent findings? I'm sorry you're going thru this & hope you can resolve it soon. Best wishes, Vee

 
Old 01-25-2010, 01:11 PM   #4
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Re: Help Me! Please! All this bloodwork....

OMG, those cholesterol meds. When they damage the muscles I have been told that it is at the "cellular level" and that it does not reverse itself. IF you are having muscle and joint pain and it goes away when you stop the cholesterol meds...PLEASE GET OFF OF THEM. I am telling you, the body is a wonderful thing and it will tell us when something is wrong so often.

My ex could not take those meds, BUT his doctor did tell him to get polycolsinol (sp) at an herbal store, 10 mg, to be taken for his cholesterol. And it worked. The doctor actually takes it himself.

I would think with all of the bloodwork that you had done, should you have Lupus (I do) something would of showed. BUT this does not mean that we eliminate 100 percent, that possibility. If you still have doubts have a doctor follow you.
I hope you will address this cholesterol issue though.....there are even lawsuits going on because of the damage these meds do to some folks.

Last edited by Madison104; 01-25-2010 at 01:11 PM.

 
Old 01-25-2010, 04:13 PM   #5
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confused725 HB User
Re: Help Me! Please! All this bloodwork....

Hi Kedel, Vee & Madison

Thank you for taking the time to reply.

So you dont think its Lupus?
Somewhere, would something have showed on these blood tests?

((KIDEL)) Thx, They ruled out fibro because there were no trigger points.

((VEE)) Thanks also! Nothing on the bloodwork indicated that the Crestor caused a problem ....Im thinking if it were the Crestor, my ESR wouldve been elevated. Im confused! Does this seem like Lupus?? Last time I stopped the crestor, it took 3 mos before I felt normal again. Does this sound like a flare??

((MADISON)) I thank you as well! I will look into polycolsinol & I appreciate the info......

Im just trying to figure if this is Lupus, or if the pain of Lupus behaves like this?
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Old 01-25-2010, 07:48 PM   #6
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Re: Help Me! Please! All this bloodwork....

I know first hand about the statins and the leg pain. I had a similar reaction to Zantac many years ago and I was told then that it definitely was drug related. I have since had to try several cholesterol meds to find one that I could tolerate. I am 110 pounds, lactose intolerant and have not eaten red meat more than once a week or pork or any processed meats in decades and I still have dangerously high cholesterol levels and triglycerides. So I have no choice but to take the meds. I also have had multiple medication reactions. several that were life threatening. So some of us just don't tolerate medications for one reason or another. This is commonly seen in Fibromyalgia. A lot of my blood panel were not significantly elevated but it was decided that based on history and what tests were positive (ANA, sed rate, and others,) that I did indeed have Lupus and FMS as well. I am concerned as to the I can't stand to touch myself without hurting. I know just the pressure of one leg atop the other when reclining on my side is excrutiating at times. I think I would seek out a second opinion.

 
Old 01-27-2010, 05:49 AM   #7
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confused725 HB User
Re: Help Me! Please! All this bloodwork....

Hi VEE!

Do you know how long it took before her pain went away?
Im sooo confused! My Cardiologist REALLY thinks the pain would be gone after 2 weeks.
The rhematologist says after all the bloodwork, (I called her back yesturday) that she can say Its not Lupus.
When I lay down, my body hurts from the presure..........Could this be Lupus & its just not showing anywhere in the blood?

Thx Vee,
Rachel

PS: how are you feeling? Its gotta be so darn tuff!



The third, an older woman, decided, with her drs. OK, just to quit the drug. Don't think tests were ever run. Her muscle & joint pain abated.
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Old 01-27-2010, 01:43 PM   #8
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Re: Help Me! Please! All this bloodwork....

hi i just had to reply to you , i too have had negative blood results but i was diagnosed with lupus 2 years ago , my specialist told me you can get negative results for years so keep pushing for a firm diagnosis , i feel for you as i had 5 years fighting my case being made to feel a fraud , hypercondriac and liar , so please dont give up and i hope you get the help you need . Lupus is a horrible disease and most doctors know little or nothing about it so may have to do your homework on it and enlighten your General Practitioner as i did take care good luck x karel

 
Old 01-27-2010, 05:10 PM   #9
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Re: Help Me! Please! All this bloodwork....

Hi Karel,

Did ANY of your bloodwork come back abnormal?

They ran Every possible test on me..........Same tests with you & they were "ALL" negative?

My Dr told me its just about impossible..........one of those tests they did, would've been possitive.

THx, Curiouse to know your story & labs ect........
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Old 01-28-2010, 01:51 PM   #10
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Re: Help Me! Please! All this bloodwork....

Quote:
Originally Posted by confused725 View Post
Hi Karel,

Did ANY of your bloodwork come back abnormal?

They ran Every possible test on me..........Same tests with you & they were "ALL" negative?

My Dr told me its just about impossible..........one of those tests they did, would've been possitive.

THx, Curiouse to know your story & labs ect........
i dont know what tests were done but there were quite a few possibly 8 test tubes of blood , the only positive test was that i was anaemic. i have been told by my specialist that it could take years of blood tests before you could actually get a positive result , he told me that you have to catch it at the right time ie:- during a flare . i am just saying what i have been told by him and i also read it somewhere . I really hope you get to the bottom of it for your sake !! i feel for you , i know what your going through. I had almost every symptom of lupus so maybe it was a foregone conclusion . just keep pushing , at the end of the day you know your body and you know when things are not right. keep me informed please !! also i lost all my hair had a break out of itchy blisters i was in so much pain i could barely stand and still no positive result , maybe it will happen one day but as of now its negative all the way. im sorry i cannot be more specific on the tests run i know it was my haemoglobin anti nuclear blar blar blar , it all gobbledygook to me, i will find out off my gp what the tests were and get back to you till then take care luv and keep strong x karel

 
Old 01-28-2010, 03:48 PM   #11
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Re: Help Me! Please! All this bloodwork....

Wow Karel, Nothing was possitive? Not the ANA, DNA, anti Ro, LA? That is almost unheard of, "according" to the 2 Rhematologists I saw. I even went for a 2nd opinion......They both told me the same exact thing!

Between 2 & 5 % of people are ANA Negative BUT Those are Either DNA or Anti Ro possitive..........They said One of those tests would show something, especially if the bloodwork was done during a flare. Also with all the others I had, they said it makes the likelihood even that smaller.........The ESR, Cardiolipins, ENA Ect.....

My concern of course is that its just not showing up in the blood "YET".

Both Drs said its almost impossible to be negative during a flare & then later come back & be possitive. They also both said, the antibodies usually show in the blood before the symptoms.

My Cardiologists doesnt think its the Crestor (says it should come out of my system in 2 weeks) But the rhemys believe thats the culprit.

Right now I have no other choice but to trust in these Two Drs. I can drive myself crazy if I dont & Im trying to remind myself, I went to TWO TOP Drs in NY that Specialize in Lupus. I'll go back in 6 weeks for a follow up but Im going to take this as good news & run for now........praying each day that my pains will go away & I can blame it on the crestor. Do I really have another choice?

Im thinking that the Drs didnt even bat an eye in regards to Lupus. Do I feel a lil doubtful? Of course! But If I drive myself CRAZY thinking, they are wrong & I am right, I'll end up nowhere.......

Did they diagnose you with Lupus?
I cant imagine that Nothing showed in your Bloodwk? Not even inflammation?
What made the Dr Diagnose you? The blisters?

Thx for sharing, (That applies to all!!)
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Old 01-29-2010, 03:13 PM   #12
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Re: Help Me! Please! All this bloodwork....

hi again ! as far as i know there was nothing that showed up although i may have misunderstood, i will be seeing my rheumatologist on 25 th march, i will ask again but as i said previously he did say that it may not show in the blood for years. i sincerely hope you get a firm diagnosis , it took me 5 years with a symptom here a symptom there and a whole lot of heartache in-between. I got my diagnosis 2 years ago with my rheumatologist holding my hand and telling me he will help me get my pain under control and keep me comfortable. I dont know how advanced the doctors here in the UK are compared to the USA but hand on heart i was told everything i have relayed to you !! i wish i could give you the answers your looking for and i hope and pray you get relief from your pain , keep up the fight and be strong . PLEASE keep intouch i would like to know that you get the answers your looking for and i would be elated to hear your pain free. look after yourself take care for now x karel

 
Old 01-29-2010, 09:02 PM   #13
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Re: Help Me! Please! All this bloodwork....

After getting some T4 results, I finally went to the doctor again and they did more bloodwork. My RA factor was positive (37 with normal range as 0-13.7). In addition my ANA Direct came back positive, but it didn't have a numerical value or pattern. Because I had hives that lasted a long time, a month on my hands, and then an 8 day breakout all over my body (even on the bottom of my feet), the doc has now referred me to an allergist, endocrinologist, and a rheumatologist. I talked to a nurse about my results and she told me it might indicate that I have lupus, which sort of freaks me out.

I'm tired a lot, I'll admit, but I thought it was because I don't work out too much and I'm 34 years old. I've been having a lot of achiness througout my body. Really, I'm just scared I'm developing autoimmune symptoms. My mother has RA and my aunt has myasthenia gravis. This sucks, but I won't begin finding out more until my first appointment on the 8th. I just thought I had low blood sugar and now it seems they've unveiled more than I wanted to know. Glad to find this message board. Will come back again soon...

Last edited by purplrainbo; 01-30-2010 at 06:53 AM.

 
Old 02-01-2010, 11:40 PM   #14
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Re: Help Me! Please! All this bloodwork....

Is the pain like cramps, stabbing, sore--explain

 
Old 02-02-2010, 06:47 AM   #15
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Re: Help Me! Please! All this bloodwork....

Hi K6,

Not stabbing pains.....More like When you get a Tetunus shot, that Horrible feeling of achyness & pain in the arm. Well I FEEL it EVERYWHERE! As I posted its in my thighs, calves, lower/ upper arms shoulders, everywhere EXCEPT the trunk of my body. Feels like my muscles are bruised underneith.

My joints all hurt! Im Exaughted!

Hope that helps,

Did you ever have an EMG of the upper/lower extremities......I remember reading one of your posts?
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