|Member Since||12/04/2009 05:58 AM|
|Last Online||01/25/2010 12:54 PM|
|Blog:||Iamdying.net and professionalpatient1.blogspot.com|
|A little about me:||Hi,
I am a married mother of two and a grandmother to a one year old boy and another boy due in March.
I have been struggling with chronic illness since 1997 when I developed complex regional pain syndrome after a surgical complication that injured abdominal nerves.
It was hard to get a diagnosis because many physicians think RSD/CRPS only occurs in limbs which isn't true. I was finally diagnosed in 2003.
I also was diagnosed with other illnesses including Meniere's syndrome, Gastroesophageal Reflux, Hiatal Hernia, probable autoimmune diseaase, dengenrative disc disease, osteoporosis, Celiac Sprue, Abdominal Migraines and asthma.
In Feb. I was diagnosed with FTD frontal temporal lobe disease which is a terminal brain degenertative disease.
I was already on a downhill course with my other illness and basically an invalid.
It has been hard to deal with my diagnosis. I found out I am atypical of what they call the usual variety of FTD in which patient's act out, have a personality change and have no insight into their diagnosis.
Even though I have received a firm diagnosis from Johns Hopkins, another doctor informed me that I must not have FTD because I don't "act out."
Through research, confirmation from Johns Hopkins and meeting a few other people like me, I know that not all people with FTD "act out."
My symptoms include apathy towards activities of daily living, my head falling to the right side, involuntary one syllable sounds in speech that occasionally happens, compulsive uncontrollable movements of hands and head, increased anxiety and compulsive thoughts. I also have horrible nightmares and I have problems with balance.
My chronic pain is fairly well managed at this time. I do still have flare ups but my doctor has changed my meds and I have received additional relief. The pain clinic which I attend does research into chronic pain as well as coordinating the Mayday project for chronic pain.
I have discovered that a key to good control of pain is having a good pain management doctor. I know it is not possible for everyone. I went through years of jumping through hoops just to receive mimimal pain medication for my pain.
I use to be a patient advocate in the health care field and I try to continue this by posting and blogging.
Feel free to post to me or visit my blog
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