ER Visit Follow-Up

The day after my very disappointing experience in the psych screening department at the hospital, I received an interesting phone call.  The woman who called, introduced herself as a psychiatrist from the hospital's Mental Health Department.  She began by apologizing for the fact that I had not been admitted to the hospital the previous day.  She said she was very disappointed and that admitting me would have absolutely been the right thing to do.  She was concerned about me and tried to get me to come back in, saying that I wouldn't have to go through screening again, I would be admitted straight to the hospital.  I told her I was leaving for California the day after tomorrow and was just trying to wait out the sickening depression that had most likely been induced by the Prednisone.  I told her my family was here, aware of the situation and watching me very closely.  She told me she was still concerned and asked again if I wouldn't feel better just coming to the hospital.  When I refused, she gave me her cell phone number and said I could call at any time, even in the middle of the night.  I thanked her for the call and hung up.

I guess it makes me feel a little better that someone at the hospital took my condition seriously.  I don't know, I had felt really abandoned that day in the ER and that had only exacerbated my depression.  It's shocking that someone can go to an ER saying they're so depressed they'd rather be dead and not be admitted.  It's just another example of my asking for help with this thing and not getting it, although, in fairness, many have honestly tried. 

I'm back home in CA and feeling the same or worse than I did when I left seven weeks ago.  Dr. Podell wasn't able to help me mostly due to the fact that he was only in NJ for a short time.  He is an excellent doctor though who does know a lot about ME/CFS and Fibromyalgia and seems to be really up-to-date with the current research.  If you live in NJ, NY or PA and are looking for a good doctor check out his website:  http://www.drpodell.org/.  He considers himself a practitioner of "Integrative Medicine" which merges traditional western medicine with alternative approaches.  I'm not a big believer in most "alternative" practices so I was glad to find that he was sceptical as well and only used alternative approaches that had been thoroughly studied.  His website is a bit mis-leading in the section where he writes about treating Fibromyalgia with anti-virals (Valcyte).  Since that was written, he's apparently had a change of heart about that option.  I asked him about it and I got the impression that he hadn't gotten as good results from the anti-viral treatments as he'd hoped and wasn't prescribing them anymore.  

On to the next thing.....

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.