just more limbo...

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lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 11/20/2008 8:03 AM (GMT -7)   
Just got my results from the last batch of testing.  ANA is still high @ 1:640 - which at least is down from the last time @ 1280.  Sed rate was nl - and no other AI indicators were positive.  The only thing off was an elevated RBC and Hematocrit, along with a low MCHC count (which apparently means the hemoglobin inside the RBC's is abnormally "diluted" - called hypochromia - which happens in iron deficiency anemia - go figure.)  I am very glad my LE's were normal.
 
Despite my symptoms...joint pain and stiffness, persistant fatigue, malaise, hair loss, sun sensitivity, numbness in hands and sometimes arms, low grade fever, skin changes, red face, dry eyes and mouth,brain fog, difficulty sleeping, mouth sores, color and temp changes in my right hand, and the fact that I lost 6 lbs. in two weeks (per the doctors scale - which I've not been able to do when I've actually dieted to lose weight, and it isn't like I'm getting any exercise....arghh!) she is telling me it's all "subjective" since the bloodwork is not conclusive beyond the ANA. 
 
This rheumie offered me Plaquenil on my first visit to her 1 1/2 yrs ago when the ANA was still the only marker.  I wasn't feeling that bad then and decided to wait.  (my bad).  She has continued to test me every 6 mos for Sjogren's, Lupus, RA etc. This past May I had been feeling crummy enough long enough to ask for the Plaq when the ANA reached 1:1280.  But then the rheumie wanted to wait because my sed rate was nl.  (her bad!).  So now I'll get the Plaq.  But she also is referring me to Cleveland Clinic (because I dissolved into tears of frustration?) 
 
I'm afraid if I start the Plaq and then go to Cleveland Clinic, even the ANA will not be showing up and they'll tell me I'm crazy and we'll have spent all kinds of money (out of network) for that kind of abuse.  It's all so unbelievingly frustrating.  The rheumie tells me some people come in with that kind of ANA plus AI markers and feel wonderful - no symptoms.  But I come in with all the symptoms and nothing shows up in the blood but the ANA....so maybe I'm just "sensitive" (can they arrest you for slapping your rheumie?) I told her what I heard her saying is that there are several possible AI diseases "circling" but she can't say which one is going to land.  She said "that is correct."   So helpful.
 
OK - I'm on a rant.  Been flaring for 2 weeks - can't even get to the grocery store - and i was sure something would finally show up.  AAACCCCCHHHHH!  If you're still reading....thanks. 
Lucy 

diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


Heartsong
Regular Member


Date Joined Feb 2008
Total Posts : 42
   Posted 11/20/2008 8:18 AM (GMT -7)   
So sorry you're getting the run around.  With all your symptoms, some doctor somewhere surely will take notice.  I hope you feel well enough to go to the grocery store soon.  If you feel that badly, then of course, you are sick!  Sometimes our desire (my own included) to have a label for our illness consumes us.  I want very much for my doctor to say that I definitely have one of the AI diseases he suspects, but patience is the key.  Some say it might be as long as ten years (!) before I know which one for sure.
 
43 year old female
DX:  Mixed Connective Tissue Disease (lupus, RA, polymyocitis, scleroderma) Jan 08
Meds:  Prednisone 9 mg, Plaquenil 400 mg, Wellbutrin XL 300 mg, Calcium/D 1200 mg, 81 mg aspirin, ibuprofen and Darvocet as needed for pain ( I take it maybe 3x/week) 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 11/20/2008 9:54 AM (GMT -7)   
In my opinion, doctors who insist on lab work should be shot.

The Lupus Foundation of America makes it clear that bloodwork is not definitive, and that lupus can be diagnosed when you have 4 of the 11 symptoms. (See link in signature.) But the American College of Rheumatology thinks a blood test is needed.

Most doctors will treat the symptoms with or without a diagnosis....but if your doctor is not treating you, it's time to find one who will!!!

"Just sensitive"????!!!!! So isn't that easily compared to an allergy? Would she treat an allergy? Then why not treat your symptoms....sorry, but you really need another doctor...and it is important to try what they suggest even if you don't think you need it.

For instance, When my disease started, I was tired & slept 18 hrs a day and was still tired. When my doctor suggested a sleep aid I really thought he was nuts. But I tried it and slept less and felt better....who knew?

I hope you find help & feel better soon,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(8mg), Piroxicam, Xanax(as needed), Trazodone, Boniva(monthly), Wellbutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


lynniecat
Regular Member


Date Joined Nov 2008
Total Posts : 51
   Posted 11/20/2008 12:26 PM (GMT -7)   
My doctor says that there is sero-negative lupus and if there is anyone with it - its me! I do have the occasional elevated ANA, but that is it! I have a lupus diagnosis and I still am not satisfied! LOL! Spend years trying to get a diagnosis and then I am not happy with it!

Your symptoms sound just like mine, minus the mouth sores.

FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 11/20/2008 3:46 PM (GMT -7)   
Lucy,

((((HUGS))))

Your story is so familiar. Stay strong!
Take care,
Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Prilosec, Nasacort, Prozac, Ambien CR.
Daily Supplements: Multi-vitamin, Calcium, B-100 Complex.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 11/20/2008 4:37 PM (GMT -7)   

Thanks guys, I'm very grateful for the empathy and encouragement.  I think without this forum I'd stop worrying about my hair loss and just start ripping it out smhair

Blessings to all....

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing

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