Thursday, January 14, 2010

The Next Piece of the Puzzle

Well I was sent to the Infectious Disease Clinic yesterday. I had the best visit to date with Dr. Perez. When I arrived he had a previous written sheet of notes based off of my many years of medical files. He first went over the information that he had gathered and then went into an hour and a half of extensive physical examination and another half hour on discussion. After this time I was directed to the Lab for a multitude of blood tests and urine test. I will officially receive the results of these tests on the 20th of this month. However, at the end of the visit he summarized and told me that he had both good news and bad news. 1) Good News - I do not have an infectious disease and he doesn't believe that I have any form of Lymphoma based on a previous chest CT that did not show any inflamed lobes. However, if needed he will order an abdominal and chest scan based on the results of the pending blood results. 2) Bad News - he believes that I may have an additional Autoimmune disease process going on. This is separate and apart from the Systemic Lupus, Sjogren's, Fibromyalgia, Hypothyroidism, etc. I may also have Still's Disease. Again, this is a disease that I had never heard of. However, after speaking with him at length and doing my research last night, I feel that the diagnosis would make sense. The reason that I was referred to Infectious Disease is that my Endocrinologist felt that I should go based on my continuous fevers. My fevers are causing such a decreased quality of life, secondary is my pain. The type of fevers that I have are ones that increase with activity. If I am dormant my temperature can come down to almost normal and sometimes will dip into the normal level. However, this means that I have to be completely still, even engaging in conversation will cause my temperature to rise. My rashes that have been biopsied and determined to be Chronic Autoimmune Urticaria (skin inflammation) the biopsy confirmed that my Lupus wasn't Discoid but was Systemic. Dr. Perez examined my rash and as I researched could be indicative to Still's Disease as well. So, I will wait again for this round of test results. I feel confident that I am in good hands, which hasn't been the case with some of the specialists that I have seen over this past year. With this potential diagnosis brings many emotions. I am happy that I might have a reason as to why I feel the way I do in addition to the Lupus and other conditions. It also brings some sadness because it just seems like it is never ending. Yet, it also brings some relief that I have some answers and maybe it will lead to a proper treatment program. This also brings a bit of depression. I am really tired both physically and mentally. Each time I receive a diagnosis I go through a period of sadness and loss; loss of another piece of my life. I actually feel as though I had a loss and I go through a period of mourning. This will take a few days to get through and then I will regain the energy that I need to accept the results from the pending tests. For now I wait...yet again.
(Click on the title above to be directed to the Still's Disease Foundation for additional information)


Sandra said...

I can completely see the feelings of loss and mourning that accompany your diagnosis. I just did a Google Scholar search for information on Still's, though, and there is a lot of research being published right now about it. The advantage of getting a diagnosis is that now you can find support and (finally) get treated for what sounds like a very painful and debilitating disease. I can't imagine how it must feel to wake up feeling like you have the flu every day.

Love you!!!

Tina said...

I hope that you are able to get proper treatment for whatever the infectious disease doctor finds. I hope that with this treatment you will be able to live pain and fever free!

It sounds like it has been a very trying journey. I hope that there is now a light at the end of the tunnel.

Please know that you are an inspiration to others. Keep your head up.

Praying for you!

Hua said...

Sorry to hear about the news. Keep your head up and stay strong.

Take care,

Director of HealthBlogger Networks

Anonymous said...

Oh my God! Hearing your story was like hearing the story of my life this past 8 years. I work full time and have been tgrying to fight this thing. I have been diagnosed with lupus, stills and now fibromyalgia. There are no drugs that seem to help. Your rash is like me looking in the mirror. I take cortisone all the time now and I am on Savella. I hope someday there is a cure for this. I will not stop trying to beat this.