help my confusion

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kanubewell
New Member


Date Joined Feb 2008
Total Posts : 8
   Posted 4/23/2008 12:28 PM (GMT -7)   
 
Since last August I had severe leg elbow and hand pain and went thru some long tests and on 3 occassions the swelling was confirmed by 2 different Drs. Saw hematologist due to low platelets bone marrow not specific...3 mths later back again----no change in plat but the leg pain was severe---off to rheumo...more blood work--etc( you all know the routine)Now on the last 2 visits he lead me to be concerned about lupus and my GP felt the same way from the way his letter was worded
   Yesterday on my visit he said because ana not up---sed rate o.k. and all things looked normal there was nothing to worry over...No reason given for the pain and inability to have a life---just take Tylenol/codeine and come back in 6 mths. devil
   THis am I had appt with hemo----sure wasn't fun as my head had come to grips with what I'd been told...He is doing another bone marrow biopsy in May......bottom line feels this is psychosomatic and  at that point the stress level came up...informed him last summer I was a happy busy person---ran my own sewing business looked after an aged Mom( who is now is my home temporarily) i
 
   mad     I didn't know whether to laugh or cry so basically did both but need to know from someone-any bit of info as -----not that I want to be sick as this last one hinted but has anyone ever been in this situation...I am not very trusting of the experts right now----off to a neurologist whom I saw 8 yrs ago for peripheral neuropathy...For a person who has not been used to this I am so happy to have some strong people in my life who also think they are wrong.....I walked 1 hr a day for a long time until last fall...That's enough and it may take me a day to pick up messages due to care of my Mom  Thanks a million as this is awonderful help and the group are terrific

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 4/23/2008 7:19 PM (GMT -7)   
((((( Kanubewell )))))))

Your story is way to common here. *sigh* I'm so sorry you are getting the run-around.

Do find another doctor(s). Folks here know that I RARELY say that. I'm usually the one who sticks up for most docs and will give them the benefit of the doubt. But honestly . . . one does NOT need to have a +ANA to have Lupus !!! So many doctors are using education that is a decade old. You may NOT have lupus, but something IS wrong. These doctors should be treating your symptoms, at the very least by relieving your pain and offering physical therapy if necessary. There are several here who do not have a +ANA and are very ill. Some of the gals with bad kidney issues have never tested positive for ANA.

I hope you can find a doc who will work more closely with you to help you.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Crohns, Diverticulosis, Sjogrens

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 4/23/2008 7:25 PM (GMT -7)   
Here is an example from the renowned Dr. Hughes:

http://www.lupus-support.org.uk/Crit.htm

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Crohns, Diverticulosis, Sjogrens

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 4/23/2008 10:27 PM (GMT -7)   
All my blood work is normal. Look at my signature for an idea of how bad it can be with negative blood work.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 4/24/2008 4:18 AM (GMT -7)   
Hi Kanubewell:

Welcome to our forum. It sounds like the others have offered you some good advice. I've had lupus for 20 years and over those 20 years my ANA has been positive and then negative. My complements have been positive and negative, my ch50 is always positive, my Sed rate is always positive, and my CRP is always positive.

My Rheumy has gone around and around whether I have Lupus, UCTD, MCTD, or something totally unknown. The fact though is that he treats me like I've got lupus. He knows I'm got an inflammatory problem and doesn't let it go untreated.

I would highly recommend you find a different doctor and if it takes several tries, so be it. You're not crazy and this isn't all in your head. Something is going on in your body and you need to find out what it is. I wish you will in your quest to figure out things. I'll say a prayer for you and send you lots of positive vibes.

Wishing you well,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


kanubewell
New Member


Date Joined Feb 2008
Total Posts : 8
   Posted 4/25/2008 5:14 AM (GMT -7)   

Just want to say a huge thank-you for all the wonderful advice---at present not sure what I'll do as I am so tired. Add to my health the added stress of family conflict over an aging Mom whom everyone assumed I would take long term.I was late in life learning to say -----no---but I finally found the strength.

For the record my C3 was 1.07 and C4 was 0.14 ( Canadian Values) I am going to take a mental rest after next week and eliminate all but what I want to do for me. I guess having been in a caring  position all my life makes it harder to shift gears.I miss the walking as found it cleared my head.....need it now.---Took Mom to Dr---did some shopping and came home exhausted so had a bad night...Hear her coming out of her room so must go get her bkfst..........Many thanks and nice to know the crazzy one does not live in this house.

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