Frustration

[usgsa2002]

I don't even know where to put this or that I even have a question other than wondering if my feelings are normal. It's really more anxiety than it is my health issues. Today I had an EMG and nerve conduction study. This was the culmination of three weeks of being poked, prodded, MRI'd and seen by a slew of doctors all of whom seem to believe it's likely an autoimmune problem causing my symptoms (tingling, numbness, painful 'sparks', dizziness, high ESR/CRP, joint and muscle pain, strained vision at times). Anyway, both tests hurt - they were tolerable, but not pleasant. And when I Google to see if pain after an EMG is normal, or what normal results look like, I just freak out trying to remember if my muscles made noise while at rest, or wondering why he didn't poke the left leg more, or thinking when I briefly saw the screen my results looked like the abnormal ones I see online. I won't get the actual results until the 28th because apparently this office likes to give them in person.

I read posts on here all the time from people who've spent years without a diagnosis or doctors who care to solve the problem, and I know I should feel lucky because I am getting good, comprehensive care and the neurologist ruled out most of the scariest things based on his exam. But then I sit and start typing and my elbows hurt, my calf spasms, my scalp tingles, my butt twitches, my fingers are sore, and every place I got stuck with a needle throbs from time to time and I just want to cry because I'm miserable, exhausted, and in pain and while I have lots of reassurance, I have no clear answers and sometimes I'm terrified that my body is just ready to stop working right and whatever this is won't be fixable.

Have others gone through this? While you're waiting for a diagnosis, how do you keep on enjoying your life?

[AireScottie]

Don't be too hard on yourself if you're not positive all the time.  It's hard waiting.  I've had symptoms of Sjogren's for 12.5 years and just got diagnosed.  It's difficult when you know your body's not right but the doctors can't find anything or don't believe you.  Wanted to let you know that some autoimmune take time for test results.  Some of mine were still not back after three weeks.  Don't want you to be disappointed if you don't have an answer right away.

[usgsa2002]

Thanks for telling me about your EMG and the suggestions. I don't meet with the rheumatologist until next week, but I imagine there will be a ton of tests. I've had a normal ANA before, but my primary doc did say she thought there needed to be much more testing. Hopefully between these doctors I'll only have to live without knowing and without something to help with the symptoms for another week or two. I'm trying to be more positive :-)

[AireScottie]

I had excruciating pain during my EMG.  It was so bad they had to stop.  It felt like I was being tortured, and I'm not exagerating.  After I was diagnosed with small fiber neuropathy by skin biopsy, I read that some people with small fiber neuropathy have pain with EMGs.  Small fiber neuropathy doesn't usually show up on EMG and is often caused by autoimmune disease.  It has to be diagnosed via skin biopsy.  Here's some info from the NIH; does it sound like you?
http://www.nlm.nih.gov/medlineplus/ency/article/000593.htm
Have you been tested for all the different autoimmune diseases out there?  ANA is not enough.  I've had Sjogren's for years and was finally diagnosed with a lip biopsy ( actually a salivary gland biopsy, but it's under your lip).
The best suggestion I have for waiting for results is to keep busy.  I take a walk, look at my flowers, read a book, knit, play with my dogs, go out with friends and talk about totally unimportant things.
Good luck!