View Full Version : Not sure what I have but I'm a mess!

04-19-2012, 08:54 AM
Hi my name is Terrie I am 46 and a grandmother to 5! That in itself will wear a person out :) Like all of you I have my aches and pains however I never explained them to my Dr. When I was young my mother was hurt so I had to pull extra duty and really didn't have time to pay attention to myself and when I did my parents always said it was growing pains didn't know they lasted this long though! My mother had a stroke in March of 2005 and a month later so did I. After a few days they diagnosed me with emphysema and polycithemia. I came home and slowly after a few weeks was back to the way I was before. I had an episode in February 2008 where I was blow drying my hair and suddenly lost the use of my left arm an ambulance was called and they said they felt it was anxiety and to see my Dr the following day he of course sent me to the er right away for tests. They determined that it was corpal tunnel and sent me home. After several months I regained almost full use except for my index finger which I still have limited mobility of. I have had knee and hip pains most of my life do to the type of work I done so was really use to hurting daily. I had a car accident in June of 2010 leaving me with an annular tear near the bottom of my spine. I have since been through PT and released saying they have done all they can so now back to my primary care physician. The knee and hip pain I have had for a few years and nothing helps I aske my Dr about it and he always says everything will feel better when they get my blood counts in the normal range so again I didn't bother to complaine about the pain and tiredness I was having. I would mention it in passing and always got the same answere. I began swelling and brought this to his attention and again was told he would do something when my cbc came back in a more normal range. I asked yet again about the pain and swelling last week so he looked at my ankles and decided to run more blood work this time more than the cbc that he always runs. My results are back and I have some negative values (was expecting RA) my ANA Direct is positive and my SSB is 2.4 everything else looks normal so I see him on Monday and so starts the long road to solving what is wrong. Although I must admit I got aggrivated and stopped the treatment for the polycithemia in October 2011 and with this cbc my crit level was the best it's been since 2005! Well thank you for letting me ramble!

04-19-2012, 09:08 AM
Unfortunately, we cannot say if your symptoms are Lupus or not. I will say that many of the symptoms that you've described are similar to several auto-immune disorders. We just cannot say which ones.
As you mentioned, the road to a diagnosis is a long one and there are over 60 auto-immune diseases. So, it is through a process of elimination that a final diagnosis is made.
My best advice to you, at this point, is to not let anyone tell you that your symptoms are not real, that it is in your head, or that there is nothing wrong with you. Be your own health advocate and insist that the appropriate tests are run in order to determine exactly what is causing your issues.
You are welcome here, no matter what auto-immune disease it turns out to be or even if you never get a definitive diagnosis.
Also, read the stickys at the top of each forum. They are filled with great information and may answer some of your questions or, at least, guide you in the direction to ask the right questions.

I wish you the very best
Peace and Blessings

04-19-2012, 09:14 AM
Thank you Saysusie I'm not sure what it is I just know it hurts I'm doing ok no matter what it turns out to be I didn't put down most of what I feel just some highlights I try not to complain so my wonderful hubby is used to the way I am with it :) If I put it all down then I look like I'm whining and I don't really want that. I don't want anyone to think I feel that way about them at all! It's just the way I am personally much better at listening than talking....

04-19-2012, 09:53 AM
I think I jumped the gun here I should have waited before posting anything I wish you all well and thank you....

04-19-2012, 08:20 PM
hi terrie, and welcome.

may i ask...
are you seeing a rhuematologist.
they specialise in the type of problems you appear to be having.

they know a little more than most gp's.
i am seeing one, as are most of the people here.

again welcome.

04-19-2012, 09:36 PM
Not yet my gp works with me because of no insurance