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

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@njgenevieve

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

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Replies to "Hello Bryan, sorry about loss of job. I must stress the importance of filing for social..."

Uh my gosh! I had no idea something like that could even happen. A few weeks back, I Googled to find out info on SSDI, and entered my email for future newsletters. Immediately after that, I started getting emails from a law practice out of New Jersey (I’m in Texas), who says they specialize in it. I’ve been saving, but ignoring, their emails; just assumed this can’t be that difficult. Now you’ve got me really concerned. The way I feel and the way my health has gone down hill, I honestly wouldn’t surprised if I’m dead in 8 years. So I’ve had a successful career and have paid over the max required for “full benefits” which I believe are around $2950/ month for me and half r 3/4 of that in addition for my wife and high school aged daughter. That’s not very much money in the grand scene of things. What kind of fees did the lawyers charge and how were you able to pay them? Thanks so much for the advice. I’m definitely coming to the conclusion I need to start this process ASAP. Bryan