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View Full Version : 18 years & now maybe a diagnosis?!


myjoynaomi
07-17-2006, 04:18 PM
Hi Everyone, My name is Beth and I have been quite ill since 1988, when I was 25 yrs. old. Like most of you I'm sure, I have been to countless Drs., in and out of the hospital, diagnosed with CFS, depression, positional vertigo, peripheral neuropathy, Type II diabetes, etc., etc...
For the last three months, my jugular vein has been bulging out whenever I exert myself at all, even to laugh. I have awful headaches! I have joint pain and stiffness in hips, shoulders and fingers, and my shoulders and right hip grind. I have numbness and tingling and burning in my fingers and toes and I get the sensation of having ants walking across my skin. I have brain fog to a very aggrevating extent.
I was recently in the hospital with abdominal inflammation (undiagnosed cause). Now my Dr. says I have an elevated SED rate and he wants to do a work up for Lupus. He has ordered a ds-dna; rheumatoid factor, lupus antigen and another ESR.
I really feel that a diagnoses of Lupus would explain a whole lot of what has been happening to me for these last 18 yrs. I do not want Lupus, but I do want to know what is wrong, both in terms of finding ways to help and to validate myself. I have been told so many times that it is all in my head or that it is psychosomatic. My father-in-law has told me to "step up to the plate" and ignore it. Wow, how I wish I could!! No one but mentally ill person would choose to be incapacitated by illness for almost two decades! I have a six-yr.-old daughter - I would like nothing more than to have enough energy and health to play, swim, ride bikes or run with her.
Please hold me in your thoughts and prayers as pursue a diagnosis. If any of you have any other suggestions for tests that should be run or a type of Dr. that I should see, I would appreciate it! Thanks so much and God Bless all of you! Beth

PennyPru
07-17-2006, 05:53 PM
Hi Beth, Hang in there!!! This is NOT in your head ... I believe you!

Sounds like your doc is running some good tests, but others can speak better than me about appropriate testing. Regardless of how these tests come back, you may want to see a rhematologist, preferably one who specializes in lupus so he/she can rule it out or in. To find one, you could contact the local chapter of the Lupus Foundation of America and see if they have a list of preferred doctors. I'm not sure if I have SLE, but I strongly suspect it but my current rhemy doesn't think so. I'm going to see a rheumy who specializes in SLE so at least I can have more confidence in this doctor is he tells me I don't have it. (Unfortumately, lupus is hard to Dx, which may not be based on labs only ... docs need to know symptoms.) I recommend you keep a journal of all your symtpoms and your history so you can show the specialist.

Oh, another thought, have you seen a neurologist for the headaches and neuropathy?

Good luck and God bless! Keep on going for yourself and your child. It's so hard, but you can do it!!!!!

laker
07-18-2006, 02:09 AM
Beth,
I am so sorry you have struggled with this for such a long time-18 years. That is terrible. It is NOT in your head! You KNOW you are not well because you ARE not well! Besides, you have physical problems that show something is wrong. I am glad you are getting some tests that may lead to a dx. I have some of the same symptoms. I have neuropathy and tingling, joint problems and extreme fatigue, elevated Sed. I have lost my reflexes in my right leg and it does not work quite right. It started with nerves and for a long time it was thought I had ms. I go back to the rheum on Tuesday for my test results. She is checking for lupus among other things. I was so happy when I found I had a very high SED because it was the first test that confirmed something was wrong. I am currently having abdominal pain thought to be diverticulitis but the meds do not help at all so ??? Interesting.
Best wishes and I hope you get answers soon. Hang in there and try to keep your chin up.
Laker