← Return to Stiff Person Syndrome: Want to connect with others

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@bryan_in_dallas

Interesting to keep reading everyone's responses and issues. I’m one of
those that doesn’t check all h boxes, so besides knowing I have
osteoarthritis and PN. U until recently, my Rheumatologist has even living
my underlying issue an Undiagnosed Autoimmune Disorder. Now that I’ve
found the SS age I’m wondering if I should do back to the Neurologist.
I’ve been to 5, plus two “doctor sparkies” but nothing ever came of it.
The last guy even did a spinal tap.

The one major SPS symptomless that I don’t have is the severe muscle
spasms. I do have what I’d call unintentional movement. This is like when
I hold my arm u with elbow bent and forearm running horizontally, my semi
flexed muscles with twitch randomly. This is not. Cyclical thing like
tremors, it’s random, and occurring more frequently.

I’m in a real bind because i got laid off (position eliminated to reduce
overhead) as a VP from a small civil engineering firm, in June, and still
don’t have a new job. Throughout the summer, my symptoms hve gotten worse -
have to walk s;pow;y with a cane in extreme pain. At 57, I’m not ready to
retire or try to collect disability, but I feel like the cane, age, etc is
knocking me out of he running. Never been in this situation; I’ve
literally had a “real job” every day since the week after my 15th birthday.

Anyhow, sorry for the last paragraph, but it puts things in perspective.
Any thoughts on the neuro vs. rheuma part? Also, does my unintentional
movement match up to anyone else’s symptoms on this page?

Thanks and have a great day! Bryan

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Replies to "Interesting to keep reading everyone's responses and issues. I’m one of those that doesn’t check all..."

Hello Bryan, sorry about loss of job. I must stress the importance of filing for social security disability and recommend you begin the process asap. I was advised to do so by extremely reputable Rheumatologist shortly after my Dx of Fibromyalgia in 2011-2012. I was mortified. Well, after repeated untimely patient charting and absence due to dr. Appointments I was considered a liability and let go. Long story short, with continued decline, my boyfriend at the time applied for me. After years of appeals and appearing before judges in Savannah, Ga I was denied. This process is grueling and especially cruel for the disabled. I would be dead if it weren’t for my strong support system. Finally, after moving from GA to NJ with my boyfriend I obtained another lawyer and proceeded further. Fortunately, the NJ Judge overturned the GA Judge decision based on medical advisory not following medical protocol guidelines period. I must say it was eight +years of pure agony not knowing what if any future I had. I was misdiagnosed with MS, DX with SPS and Small Fiber Neuropathy the first year of moving to NJ. And of course 99.9 % of mds assumed I was crazy within minutes of meeting me. I must say they have learned a lot from me. I am my own advocate. It’s a full time job. In reference to your unintentional movement, yes, it happens to me. As a matter of fact I actually unintentionally threw my cell phone at an elderly lady in an Apple Store. Thankfully, she was not injured. My red face and damaged phone quickly departed. The worst of my symptoms I must say is being easily startled. I have come very close to causing heart attacks to those nearby when I’m startled. Afterwards, I have spasms in chest area causing breathlessness and severe fatigue. Finally, it’s imperative to rule many other Dx which mimic SPS. Elevated GAD-65 auto antibodies is definitely a significant factor to consider. I would highly recommend finding a neuro immunologist at University if possible. I was unsuccessful scheduling an appointment at all Mayo Clinic’s. Mayo Clinic advised appointments are completely booked throughout year and unable to book appointments for next year at this time. Lastly, I’m back in GA due to extremely high cost of living in NJ. I was told when I moved here that the ivig I was receiving for past year was not available. I was administered another brand which was extremely toxic to my liver. I’m now awaiting results from scans my oncologist ordered due to suspected SPS paraneoplastic kind. Due to insufficient Neurologic care in small GA town and surrounding areas I will be commuting to NJ Neurologist that never gave up on me. It’s imperative to find a trustworthy doctor that really cares, not one that just hands you prescriptions left and right. I wish you well. Let me know if I can help in any way.

Genevieve Howard-Lanier