JOANNE’S STORY

 In 2002 I first noticed how my back and legs were getting stiff more often and lasted longer. A few years before this, I did suffer a accident to my tailbone causing it to break. It took 6 months for a full recuperation. I attributed a lot of what I had the numbness, tingling and burning sensation to this for years. In 2003 I started to get full numbness and tingling in the arms, hands, head and partial face. None of this occurred all at once but intervals but occurred on a daily bases. In 2004 and 2005 spasms occurred as a precursor to the stiffness. For a long time I hid the progression from my family and continued to work and go to school as I did for a long time.

Throughout the years I have seen 6 different Neurologists and a Rheumatologist all of which had that had their own outlook and diagnosis on me. The diagnosis were; Fibromyalgia, Lumbar Stenosis, Degenerative Disc Disorder, Carpal Tunnel Syndrome with De Quervanes, Occipital Neuralgia, Bulging Disc L5 and L6, Mild Scoliosis and Mild Kyphosis. Blood test for Lupus and other Autoimmune Disorders were done and none showed except for Hypothyroidism and history of Breast Cancer

With all my complaints over the years in 2007 in August to be exact, I saw the last Neurologist who happens to be new here to Hawaii from UCLA and specialist in movement disorders. Twenty minutes of going over symptoms past and present and tests that I have done in the past, he had 3 suggestions of what it could be I was going through. The three were Seizures, MS or Stiff Person Syndrome. He assured me that the last was a rare and incurable disease that could be possible but not positively it. He scheduled me for an Eeg, blood test called Anti-Gad and an MRI on my back. If possible a lumbar puncture to see if there are any proteins in my spinal chord.

I did the Blood test first than the EEG. To my amazement as well as the technician the test triggered a major episode I never had that scared the hell out of me. The lights and the winding sound made me stiffen up in places like my shoulders, face and made my arms flare like a fish. My face stiffened so bad I could not speak one word but I knew what was going on around me but had no control. Episode lasted about 15 minutes but felt like an hour. After the episode I had to sleep it just wiped me out.

The MRI never had to be done because 2 positives out of three was a good enough reason to dx me with SPS and start treatment. My Anti-Gad test came back in high levels. Medication therapy started ASAP and my first round of Ivig was scheduled. Things happened so fast I couldn’t even decide yes or no to what was being offered nor read about the available treatments and the side effects. The medications were very sedative and the Ivig caused aseptic meningitis, drop in my WBC which I needed a nuepogen shot and a depletion in my electrolytes.

Ivig was canned and Plasmapheresis was introduced. It worked the best for me with the meds. Though I must say Klonopins after a long term usage can make you go crazy so I cold turkey against doctors advise and feel better off than on them. He advised to not do that with Baclofen. For 11 months of plasma it was good then things changed for the worse. My catheter was colonized with Staph which turned into Sepsis. Catheter was DC and than another was inserted after I was cleared by the infectious team. 3 months later Staph again. Same motions I went through but my body got more weary. Than in 2009 Staph/Sepsis occurred again this time fever of 107 that nearly killed me and a memory loss of what occurred prompted removal indefinitely of anything being inserted into my body because the risk of heart valve damage was high. Little did I know that it happened already. I have had A DVT in my Right Jugular, numerous clots in my chest, pulmonary embolism and an aneurysm is way to much for me.

I am on the brink of giving up on all because I have run out of options. Propofol and Rituximab are not an option and the Pump and catheters are out the window. I have nothing left but my hope and will that there will be another treatment that can and will make me better without all the complications.

I am very saddened and angry at this disease that has taken over my life as well as my family who has had to watch me endure daily. I have gotten worse over the past year and am getting very weak and unsure of fighting this losing battle. If someone can give me a reason to fight please do.