PLEASE HELP ME! ALLL This Bloodwork!

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Confused725
Regular Member


Date Joined Jan 2010
Total Posts : 27
   Posted 1/31/2010 1:01 PM (GMT -7)   
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
I had a bone marrow, CTs to check for Lymphoma, EMGS to check for muscle damage, MRI to check MS.

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. IN FACT he said its IMPOSSIBLE.  After all 9 months, I was fine & AGAIN, Ive been off it 3 weeks already..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 its  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 the  joint pain? (When my son leans on me, it hurts!!) My joints are NOT swollen, just hurt, :-(

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
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Last edited by confused725

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 1/31/2010 6:36 PM (GMT -7)   
The doctor in incorrect when she talks about lupus ALWAYS being accompanied by a positive ANA. Many of us have lots of flares and symptoms and are diagnosed without having a positive ANA. Conversely, a positive ANA can mean one of many autoimmune diseases, not just lupus.

Check out www.lupus.org and/or www.rheumatology.org and you will see that Lupus is diagnosed by have 4 of the 11 symptoms, and they do not have to all be present at the same time.

Hope you feel better soon,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


Confused725
Regular Member


Date Joined Jan 2010
Total Posts : 27
   Posted 1/31/2010 6:58 PM (GMT -7)   
Hi  LynnWood
 
The Dr didnt say that you must have a possitive ANA to have Lupus. I think you misread my post~~
 
She said you MUST , for the most part, have "ONE OF"  the blood labs possitive. She said, since all of mine were negative, I cant have lupus.
 
By one of the labs, I mean, Either the ANA, Anti-Ro, Anti DNA, ect...
 
You CAN have Negative ANA lupus BUT What Im trying to find out is, IS IT true that one of the other tests will then be possitive.
 
 
 
 

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 1/31/2010 7:24 PM (GMT -7)   
I was diagnosed with them all negative. Then the ANA only became slightly positive. Now they are all negative again. Read into it what you will.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Post Edited (Lynnwood) : 1/31/2010 8:04:55 PM (GMT-7)


crstr
New Member


Date Joined Jul 2009
Total Posts : 9
   Posted 1/31/2010 7:40 PM (GMT -7)   
i think i found this site here somewhere, but it was an interesting read..........go to:http://www.lupus-support.org.uk/Crit.htm

everything i've read, says that the symptoms r what u should go by & what u say sounds like lupus........go to another rheumatologist & another till u get someone who can tell u what u have..........i know i struggled with what i had for a long time........it took me 6 drs & 6-1/2yrs.......& i was so tired, i couldn't do it anymore..........i was lucky, the 7th was the one..........

what amazes me, is that so many drs, if the tests say there's nothing there, there's nothing there.........it's a very short sighted way to practice medicine..........the operative word here, being "PRACTICE"..........& they do it on us..........sad commentary!!...........
systemic lupus, adrenal fatigue, hashimoto's disease....57, mother of 4, w/6 grandkids, w/ a wonderful, understanding husband.........


Confused725
Regular Member


Date Joined Jan 2010
Total Posts : 27
   Posted 1/31/2010 8:12 PM (GMT -7)   
Hi Lynnwood,
 
Thx again,
 
Amazing!   None of your tests were possitive? Im trying to research this but all i keep coming up with is that 2-5% can be ANA negative but most of those people  will test possitive for the Anti-Ro.  How did you finally get a Dx? I feel as if Im crazy. Ive gone to 2 Different, highly respected Lupus specialists in NY & thet both tell me, ALL the bloodwork is good. NO LUPUS!
 
Thx for your help,
Rachel
 
 
 
Hi CRSTR, :-)
 
Ty for taking the time to reply & for the helpful link! Wow! It took you A long time to be dx'ed as well.  What was it about the 7th Dr that you think he was looking at that made him diagnose you?  Im confused about all of this, as if you cant tell.
 
Im thinking to ask for some medication, sort of a trial run. If it works, maybe that'd be one way of clarifying the possibility.
Sad to think that so many Dr's are underdiagnosing such a serious disease!
The Two Drs that I saw, seem so confident. They barely blinked an eye at the possibility. One, a woman Rhemy, who is a Lupus Researcher, explained that the symptoms, usually, in most of her 25 years of research, come AFTER something in the bloodwork is positive.............Im lost,  completely lost!
Thx
 

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 1/31/2010 8:39 PM (GMT -7)   
Many doctors these days treat the symptoms, and the diagnosis is a secondary issue. Sometimes the diagnosis is confirmed or rejected based on the response to particular treatments. For insurance reasons, it is often preferable NOT to have a lupus diagnosis. Yet if you are applying for disability, having the diagnosis can support your claim.

I think the most important thing to realize about Lupus is that it is a "disease of elimination" -- there is no one thing that 100% indicates it is lupus -- rather once everything else is eliminated lupus is the only label remaining. Thus visiting a doctor with a "can you check for lupus?" request is almost guaranteed to come up with a negative answer, as they don't pause to properly eliminate other possibilities, instead they try to move quickly to satisfy the patient.

Lupus is called the 'disease with 10,000 faces', because it manifests differently in each subject(victim?)...when your immune system decides that normal body cells are foreign and must be attacked....well, there is no predicting where the attack might occur.

If your doctors are all dismissing you without even trying to find something to relieve your symptoms, it's time to find another dr. Feeling better is *important*, with or without a label.

Good luck,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


Confused725
Regular Member


Date Joined Jan 2010
Total Posts : 27
   Posted 1/31/2010 8:48 PM (GMT -7)   
 
 
So Very True Lynwood!
 
 Funny, you should say that. I was just sitting here thinking, Well, if its not Lupus, then shouldnt they be figuring out WHAT it IS?
They seem to believe its the Crestor but the cardiologist says thats out of my system.
 
All I know is IM IN PAIN! My muscles, my joints feel like Im all bruised up, Would it be silly to try prednisone to see if it helped?
 
Thx for sharing,
 
 
 

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/31/2010 10:58 PM (GMT -7)   
Hi Confused,

There are other conditions that might be causing your pain, and prednisone is a dangerous drug! That being said, many people do respond to pred very quickly IF their disorder is an autoimmune disease.

If it's fibromyalgia, I've been told that prednisone can make fibro worse.

I hope you find a doctor who can help you with this soon!!
JoAnn
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 2/1/2010 12:44 AM (GMT -7)   
Hi Confused,

I have the same symptoms as you with the muscle and joint pain. If someone grabs my arm or I scratch myself a little too hard, my muscles hurt soooo bad...like someone just punched me. I was told that I did not have fibromyalgia either. I do have Lyme Disease but I think the body pain is coming from something else. My doctor thinks I have an Auto Immune Disease. I'm not sure what it is yet though. I see him again on the 18th and I'm hoping we can figure things out then. I had an abnormal ANA test years ago before this pain even started. Let's keep in touch because I'm curious what your doctors find out. Please email through my profile or post here when you get an answer.

Lynnwood: I hope you don't mind me posting. The title caught my eye since I've been struggling with the same symptoms.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Confused725
Regular Member


Date Joined Jan 2010
Total Posts : 27
   Posted 2/2/2010 12:52 PM (GMT -7)   
 
 
(((CajUngrl))),
 
Yes, surely we can keep one another posted.
 
You dont think its the Lyme causing your problems?
 
Did you ever repeat the ANA or any other tests?
 
 
(((NASALADY))))
 
Yeah, I know pred is not good to go on but I suppose I was thinking, to try that & see.
 
My dr says there is NO sign of imflamation, so it wouldnt help.  None visable & non on the labs...........Im lost for now!
 
THX!
 
 
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