Sunday, January 29, 2012

It's not Lupus, but...

Has it really been two months since my last post?  I really have no idea how time can be passing so quickly...sheesh!  Well, Merry Christmas, Happy Hanukkah, and Happy New Year!

I went back to the dermatologist to review my results with her, and she said I do not have lupus.  All my follow up tests had come back normal.  She did not have any suggestions as to why my other tests were abnormal or why I was losing my hair.  She suggested I use maximum strength Rogaine for men and come back in a few months. 

Uh, no thanks.  I will not be going back to a dermatologist who doesn't even examine my hair, skin, or nails. 

After my last experience with a specialist (i.e., when I was MISdiagnosed with epilepsy), I vowed to always seek a second opinion when it comes to more complex diseases and conditions.  I made an appointment with a rheumatologist recommend by my local Lupus Foundation chapter. 

The good doctor took a very thorough medical history and did a full exam.  He confirmed that I did not have lupus, but he noticed that I had unusual muscle weakness.  He asked if I had ever been to a neurologist for the weakness.  I told him no because I had always assumed it was Chronic Fatigue Syndrome.  He suggested the possibility of a metabolic myopathy. 

Metabolic what?

Sigh.  I often dream of what life would be like if I were normal and healthy and not scheduling medical appointments with specialist after specialist.  Wouldn't that be nice? 

Deciding to follow up on this new possibility, I ended up making an appointment with a neurologist who specializes in neuromuscular diseases (I didn't want to take any chances going to a general neurologist again).  I'll write more about my initial appointment in my next post. 


Patrick W. Calvin said...

Hi Alyson,

I wanted to introduce myself since I'm new to the CFS blogs. So far, I follow your blog and one other. I just find it helpful to learn from what others are going through.

Anyway, feel free to visit my new-ish blog some time.
By the way, sorry about the similar format of my blog. It wasn't intentional!

Take care,


Jocelyn said...

Good luck with the new neurologist, Alyson. I was referred to one several years ago because of muscle weakness, too. He theorized I could be suffering from myasthenia gravis, but the tests came back negative. Just another ME/CFS symptom.


alyson said...

Hi Patrick -- Thanks for following my blog. No worries about the similar format. It just means you have good taste! I've added your blog to my blog roll.

Hi Jocelyn -- Yeah, I'm pretty much expecting all my tests to come back negative. I've been diagnosed, misdiagnosed, undiagnosed, and tested for so many random things. More often than not, the more serious and exotic tests come back negative for me.

Patrick W. Calvin said...

Thanks Alyson, I appreciate that. I'll be interested to read about what happens with the Midochondrial Myopathy. I'd never heard of that before and I'm all about trying to rule out other specific diagnoses besides ME/CFS, so thanks for the information.

Good luck.