Lower Than Low

I went to see doctor number 4 for a second appointment today.  The prognosis was so depressing that I spent most of the day after, crying.  I was finally able to sleep for an hour or so which helped my mental state a bit and allowed me to talk to my parents about the doctor visit, which I hadn't been able to do earlier in the day.

None of the medications this doctor has prescribed have helped me.  Admittedly, the doses were low but I haven't seen any real change in my condition.  Actually, that's not entirely true.  I've been taking Zyflamend, which is an otc supplement for joints, for about two weeks.  I've been walking one mile per day and up until about two weeks ago the walks consumed incredible amounts of energy and effort.  It was as though I were a baby just learning to walk.  My muscles were weak, burned and didn't seem to involuntarily "know what to do".  I had to mentally direct my legs to lift and move forward which resulted in very slow, clumsy walking.  Since I've been taking Zyflamend, my walking is getting smoother and easier.  I think I'm walking a little faster and my muscles don't have nearly the weak, burning feeling they had.  It may just be a phase, but I'll keep taking the Zyflamend for the time being if I can afford the exorbitant cost ($40 for 60 capsules taken twice a day).

The doctor had also prescribed low dose Prednisone, Nuvigil, Sinemet and Lyrica which I tried one at a time.  Since they didn't seem to help me, we're moving on to the next "experiment".  I had taken high-dose Predisone over a year ago and to date, it's the only thing that has given me any of my life back and it actually made me feel almost completely well at one point.  This only lasted a week or two though, since my doctor didn't want me taking that high a dose (50mg per day) for too long.  I was so dissappointed when it wore off, though, and I was back to being as sick as I had been before taking it.  According to this doctor, this is an anomalous reaction considering my rhumatoid factors, etc. were normal.  He's guessing that I must have some inflamation somewhere in my body that's just not showing up in the blood work so, he's prescribed high-dose Prednisone again.  He wants to see if I have the same reaction and if I do, I can have a "break" for a couple months while we figure something else out.  When I asked him what he thought my diagnosis might be he mentioned Fibromyalgia, CHF and Mixed Connective Tissue Disease but added that these were all just names and probably related to some un-named auto-immune disease.  There were some other "speculative" possibilities we discussed but I just don't have the energy to go into detail about them now.  I hope to in my next post.

Since I'll be going back to California in two weeks, I probably won't see him again except for maybe an appointment via phone.  He's given the name of a doctor in the Bay area that he thinks I should see.  Since I live in Southern California I'm not sure how that would work logistically but I'm not worrying about that now.  My only goal today and tomorrow is to feel better mentally.  My depression has been so severe during the last couple weeks that I haven't been able to conjure a purpose for my existance on this planet.  The doctor prescribed Welbutrin to augment my Zoloft but I'm sure it'll be at least a couple weeks before I see any effect from it.  I'm just hanging here by a thread in the meantime.

Lots to Catch Up On

Things had become so frustrating in my search for relief from this ailment that I even lost my enthusiasm for writing.  I just realized that it had been so long since I had posted.

I am currently staying with my parents in New Jersey and I've been here since early December.  I'm sorry to report that things aren't really much better.  I had planned on visiting my family for the holidays (as I do every year).  But when I found a specialist (Dr. Podell in Summit, NJ) on the Internet who's office is not 30 minutes from my parents house, my trip took on a second purpose. 

I've been here for about four weeks and have tried two different prescription medications (Nuvigil & Prednisone) and about three herbal supplements (potassium, DHEA & Zyflamend).  The prescriptions did little for my condition so the doctor told me to stop taking them.  I'm not sure about the supplements, but he said to give those about four weeks.  I've seen the doctor once for a two hour appointment and had numerous phone conversations.  He has a lot of experience with these "autoimmune mysteries" and has said that the only real way to find relief is through extensive trial and error.  Of course this concept is not new to me and has been how I've been living for the past two years.  He did find those elusive trigger points that my other doctors couldn't find so at least I now have a definitive diagnosis of Fibromyalgia, however, he thinks there may be other things going on as well such as Mixed Connective Tissue Disease.

I've been compiling and organizing all of my medical records for the last two years including blood work and medication history.  My next few posts will list this information as it may be helpful for anyone else out there who's going through a similar experience. 

I'm feeling very frustrated, discouraged and depressed.  I'm so scared that I'll never get better.