I'm 27 years old, and was finally diagnosed with Narcolepsy a couple of years ago, after 8 years of telling Drs. that something was wrong, and having them tell me that my bloodwork was fine & I probably just suffered from depression.
I take 80mg of Adderall a day, but in September, it stopped working so well, and about the same time, my wrists, elbows, fingers & shoulders started to hurt, and then my hips shortly followed. Some days are worse than others, but it seems that it's pretty much equal as far as left & right. i.e. if 1 hip hurts, they both hurt- if my finger joints hurt, all 10 are affected.
Also, I noticed that I had lymph nodes that would randomly swell.
By mid November, my toe joints started to hurt, and my feet and toes turned dark purple. At the same time, I got this bumpy rash on my toes, that itched terribly at night. I sometimes have no sensation in my toes at all, and now, sometimes even my legs go completely numb, and I can't stand.....like they're "asleep", but as they gain back a little sensation, they never get that "pins and needles" feeling at all, but just gradually gain some feeling.
I started having daily headaches, fevers most evenings, disgusting- drenching night sweats. My vision(which had always been perfect) seemed to quickly deteriorate- mostly depth perception, night vision.
In addition, I've had this nagging pain, under my right rib cage, that a GI Dr. said was "probably" my gal bladder(about 2 yrs ago), though didn't find anything diagnostically evident. Last year, very suddenly, I had an intense pain there, that lasted for 5-6 hours. A couple of weeks ago, it came just as intense, but only lasted a few seconds. This is the most intense physical pain that I've ever felt, with the exception of childbirth, which I would call "equivalent".
Being as that I never seem to find a confirmed answer, or the interest from Dr.s to do anything other than "quick fixing" my symptoms, I put off a Drs. appt., until Jan. After a week, I called to find that the Dr. had taken a vacation after my appt. that Fri. I DID get from the nurse that my White BC cnt. was 3.2. I tried to call after another week, and then a couple of times after, but the Dr. wouldn't return my calls.
I got so bad a couple of weeks later, that my husband took me to the ER, where I was discovered to have a bladder infection(I also keep getting sinus & ear infections). That Dr. said that I should see a Rheumatologist, and recommended one. The Rheumatologist wouldn't see me UNLESS I got a referral from the Dr.- Ya know, the one that won't return my calls.
I'm just lost. I don't like to go to the Dr., because they seem, not only impersonal, but also condescending, as if I'm exagerrating. I just want them to find out what I can do to get back some quality of life.
Last year, I was running a $multi-million unit for a nationwide company- Now, I'm so sick, that I'm living in poverty, in a govt. subsidised apt., and have had to turn over my 3 little girls to my ex-husband, due to the inevitable circumstances resulting from being sick so much.
Could anyone tell me if this sounds like Lupus? Or, what else could be an option? And what I might be able to do to get some help? I'm desparate to be back with my girls again, and would appreciate <u>any</u> insight that anyone may have to share.