Dont know what to think??

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dennylynn
New Member


Date Joined Dec 2008
Total Posts : 11
   Posted Yesterday 5:19 PM (GMT -7)   
Hello everyone , i went to the rhumey today and he said that i have an auto-immune disorder, but he does not know which one!!. He said my rbc was low, my hemaglobin was high , my platlets are high, sed rate is 35 ana 1:160 postive and i also may have a pocket of fluid around my heart. Does anyone know what this could all mean?  he said poss ra or lupus?? or a lot of other disorders?? I have no idea what to think about all this. He said it is not fibroma and he stared me on plaquenil. any thoughts would ne helpful.

Post Edited (dennylynn) : 12/8/2008 5:31:58 PM (GMT-7)


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted Yesterday 5:58 PM (GMT -7)   
Hi Dennylynn, I can relate to the frustration. Good thing is no fibro. You don't need that with everything else. It's a normal thing for th4e rheumy to start you on plaq. it's the safest drug to start with. Did he give you predisone? or anything for the possible fluid? that needs to be kept an eye on. No one is going to be able to tell you what is wrong with you. Not unless they have a crystal ball. You need to keep a record of everything. even if it's a hang nail. You never know what is going to be important. If it calls for it take pictures. Don't think swelling or rash will still be there by the time you can get into the dr. When you go to the dr. ask for a copy of everything. You never know what might happen your rheumy may move you get a new one they can lose your records. Besides you can check your records against each other how your blood tests compare. what seems to work bests for ya. At this point getting the eds you need is the best place to start. Sadly plaq. is very slow to work. it could take a good 6 months before all the suden you relize wow I havn't had this or that in awhile. At least that is how it happened to me. Just try to be patient. Come here and ask questions people are great here. If you get angry it won't be the first rant this board has ever heard. When good stuff happens share that too. we can always use a good new day.
hang in there you aren't alone
hugs
carol
Prayers,hopes and dreams!
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
 
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted Yesterday 6:13 PM (GMT -7)   
Hey Dennylynn,
 
Well, you're finally getting somewhere. You must have a sense of relief to know that something really is going on.... I'm also glad you don't have Fibro.  That is a double whammy you don't need.
 
Okie has excellent advice for you.  I don't know what else to tell you except to make sure that you see a cardiologist about the heart issue. Get started on that plaquenil.  like Okie said, it takes a while to kick in.
 
As far as other autoimmune disorders go, I really don't know what to suggest.  Usually with lupus the hemoglobin and platelets are low, not high.  But who am I to say!  Lupus is wacko-bizarro.  Did you test positive for the RA Factor?  Is that why your rheumy is considering RA? Do you have any joint malformation?
 
Keep a close raport with your rheumy and any other specialists you see.  That is your best bet to a healthy future.  And learn everything you can about your disorders.  Knowledge is power!
 
Blessings,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted Yesterday 6:34 PM (GMT -7)   
Hi Dennylynn, Carol and Ginny have given you some great advise. I am not sure what kind of symptoms you are having but if the doctor is thinking it's lupus there is a criteria list (see last link) the doctors go by, if you have at least 4 of the 11 they will consider lupus. I know how frustrating this can be, we've all been there, I pray you get answers soon!

When I started plaq I could tell a difference in my fatigue levels within a couple of weeks.

Also be sure to check the thread "lupus resources" link and visit www.lupus.org


www.lupus.org/education/topics/outcome.html (towards the end of the page)
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)

Post Edited (jhmom) : 12/8/2008 6:49:45 PM (GMT-7)


dennylynn
New Member


Date Joined Dec 2008
Total Posts : 11
   Posted Yesterday 6:58 PM (GMT -7)   
Thanks everyone, rhumey did more blood test today and a echocardiogram . hopefully that will help him tell me whats wrong. I think the reason for thinking RA is becuase my mom has RA . Does anyone know about a Low Red Blood Count??
 

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted Yesterday 8:37 PM (GMT -7)   
Hi Dennylynn,
 
Low RBC is quite common in lupus.  The immune system will attack the red blood cells, destroying them.  A severe form of this is called Hemolytic anemia.  I've had this twice in the past 8 years.  It's life threatening if not treated. But you'd know if you had it!  You'd be so sick that you'd be in the hospital....
 
Once the immune system is suppressed (through medication), your RBC should go back up to normal. 
 
I'm glad you're getting an echocardiogram done.  I get one every year.  I have heart valve issues due to inflammation from Lupus. It's a painless test.  I usually nap!
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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