Showing posts with label rheumatologist. Show all posts
Showing posts with label rheumatologist. Show all posts

Thursday, October 31, 2013

Part III: Almost Normal

Hello folks!

I'm so sorry about my long absence.  This time I've been away because I've been feeling good and have been out and about almost like a normal person.  I suppose you can say I've been making up for lost time.

I'm actually recovering from a nasty throat infection right now, but I'm otherwise doing well.

The biggest improvement has been with my energy.  After taking high doses* of CoQ10 (prescribed by my neurologist after a test confirmed I had low levels of it) for over a year, I have more energy than I've had in my entire adult life.  I don't make this statement lightly, and I'm definitely not saying that CoQ10 has "cured" me.  What it has done, however, is help improve the way my muscles make and process energy.

The improved energy allowed me to start exercising over the summer (with permission and specific guidelines from my doctors), something that would have been impossible just two years ago.  Unless I'm feeling ill, I exercise once a week for about 25 minutes with a trainer.  That's really my only formal exercise in a given week, but it's still 100% more than I used to do!

Before I agreed to work with my trainer, I interviewed him and made sure he understood where I was coming from physically.  Even though I looked young and healthy on the outside, I had the muscle atrophy of a 70 year old.  I also explained the instructions from my doctors.  No free weights because they're tough on the joints.  Bands are ok.  No heavy aerobic exercise because they could damage my muscles.  Low impact is fine.  He understood and really got it.

Around the time I started exercising, I started taking generic Plaquenil.  This medication is often prescribed for autoimmune diseases such as lupus and rheumatoid arthritis.  Though I can't tell for certain, I think this medication is helping me as well.  The joint pain in my hands seems to have decreased.

Fast forward to today.  I saw my neurologist this afternoon, and she confirmed my strength has increased.  This is the second visit in a row that she said my strength has increased, so I'm thrilled to know I'm on the right track.

We both think my improvement may be due to a combination of factors: the CoQ10, Plaquenil, and the strength building exercises I do with my trainer.  We also agreed that today would be my last visit with her as my neurologist because what I have is not neurological.  I will be continuing my followup with my rheumatologist and primary care physician.

That's all I have for now.  I've got to go to bed!


* Note added November 2, 2013:  I take 400mg of CoQ10 two times per day (total 800mg/day). 

Tuesday, July 23, 2013

Part II: It Still Might Be Lupus or Not...

I have to apologize for taking so long to follow up with my last blog post. I took a bit of a hiatus from blogging (as I do from time to time) to focus on myself.

I'm thrilled to report that I'm the happiest and HEALTHIEST I've been in many years!  :)

Here are updates from my last post Part I: Um, So It Might Be Lupus...:

* The skin biopsy results were inconclusive.  They showed inflammation and allergic reaction, but they didn't prove lupus.  However, they didn't disprove lupus.  Basically, I have two new scars on my arm for pretty much no good reason.  They go well with my muscle biopsy scar on the other arm.

* I love my neurologist. Period. She is one of the most supportive doctors I have encountered in my entire life (and I've encountered a LOT of doctors).  Based on my positive ANA, the skin rashes that appeared after extra sun exposure, and the achy finger joints, she agreed that my symptoms seem autoimmune.  She knew I was going to see a rheumatologist and told me that if my rheumatologist didn't want to put me on Plaquenil, she would just to see if it would help. 

* I saw my rheumatologist, and he agreed that my symptoms seemed autoimmune in nature and put me on Plaquenil.  I still do not meet enough criteria to get an official diagnosis of any particular diagnosis, but he strongly suspects that is the cause.  Though I don't have an official diagnosis, what I seem to have could be called "undifferentiated connective tissue disease."   He wants me to stay on Plaquenil for about six months before we decide whether or not it's helping me. 

* Interestingly, I've also seen a geneticist.  I was referred to her several months ago by my primary care practitioner because of all my seemingly unrelated symptoms.  The geneticist suspects something called Ehlers-Danlos Syndrome, a type of genetic (NOT autoimmune) connective tissue disease.  (Click on the hyperlink to learn more.)  Many people who have EDS were originally misdiagnosed with things like lupus, rheumatoid arthritis and/or fibromyalgia.  Hmmm...very interesting. 

In my next post, I'll go into more detail about these latest developments and explain why I think I've been feeling so healthy. 

Until next time!