help my confusion

 

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.

   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

       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

Here is an example from the renowned Dr. Hughes: http://www.lupus-support.org.uk/Crit.htm

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