Monday, June 12, 2017

Stiff Person Syndrome

June 2017 came in like a wrecking ball, and I apologize if you have Miley stuck in your head now like I do.

After years of searching for answers, and coming up with nothing, I've received two diagnoses in the last week, and one possible diagnosis. My internist told me I have Autonomic Neuropathy. Next I met with my Gastroenterologist, who told me I have Intestinal Dysmotility.

Lastly, I met with my Neurologist, who thinks I may have a disease called Stiff Person Syndrome based on my blood results and clinical symptoms, and is going to treat me as such. Since brain fog is a real thing over here right now, I'm going to copy and paste things from different websites and include sources, so you can learn about it if you'd like to.

This would be the answer to my walking/gait issues, which I thought we may never know.

"Stiff Person Syndrome (SPS) is a disease of the nervous system. Progressively severe muscle stiffness typically develops in the spine and lower extremities" Source  

"SPS is extremely rare. Although it is not possible to determine the exact prevalence, it may occur in fewer than 1 per million. The disease is more common in women (the ratio is 2 women for every man effected). There is no predilection for any race or ethnic group. There is an association with diabetes and perhaps over half of patients with SPS have or will develop diabetes. Other autoimmune diseases have been found in association with SPS, for example: thyroid disease and vitiligo." Source 

"Although most often the disease begins insidiously and progresses over years, in some cases symptoms can develop over weeks. The first symptom is usually a persistent progressive stiffening of the back or a limb. A sensation of aching or stiffness may be noted. This progresses with time and is described as stiffness, rigidity, hypertonia or increased tone. Additionally patients experience spasms of the involved muscles which are characterized as severe, tremendous, intense and painful. The examiner may feel there is a volitional component. When stiffness and spasms are present together patients have difficulty ambulating." Source 

"The pathophysiology of the disease is autoimmune. The most common pathologic correlate, anti–glutamic acid decarboxylase (GAD) antibodies." Source 

"Treatment may involve high-dose diazepam, anti-convulsants, or intravenous immunoglobulin (IVIG)." Source 

"Although SPS is a serious potentially life-threatening disease, and some of the treatments have serious potential side effects; the course of SPS is variable. There are patients who, with proper treatment, are able to return to activities they enjoy." Source

Before I even have time to let this sink in, we're headed to Cleveland Clinic. Who would have thought all of this would come days before my trip? When we get back I'll be starting the first line of treatment for SPS, which is high dose diazepam.  All I know is one thing... despite any sort of prognosis, I am so ready to close this chapter of my life and move onto the next. And here's to seeing what other answers and opinions may lie in Cleveland.

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