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Allergies, Autoimmune diseases, Blood disorders, Bone, joint, and muscle disorders, Cancer, Chronic pain, Kidney and urinary tract disorders, Neurology (brain and nervous system)

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Nov 25, 2019 · Stiff Person Syndrome in Brain & Nervous System

Pardon me for the late response. I’m still in the process of learning how and where to ask or respond. This is a daily process for me period. In reference to unsolicited New Jersey or any unsolicited Attorney emails, my recommendation would be to delete them all. Fortunately, my initial NY attorney did not show for my NJ Hearing. If he would have, he would have ended up with over 30% of my back pay & more. Come to find out there are many vultures out there preying on helpless, vulnerable disabled people. Fortunately, an attorney at my hearing overheard my circumstance & agreed to meet me at my home address a few days to review my case. She was able to dismiss my previous attorney whom would have charged exorbitant amount and resume my case with max amount of $6,000, which was deducted automatically from SSD backpay. From what I understand 6,000 is limit Judge will allow to be deducted. Legitimate Attorney will not charge you if your case is denied, which it will most likely be time and time again. At this time the system for applying for benefits is setup in such a complex, time consuming way, most just give up or die waiting. Your local Social Security Ofc should supply you with list of legitimate Attorneys in your area. Regardless, be sure to read the fine print. Lastly, do not give up, Keep good notes, a daily journey is a must. Finally, keep your head high and know there is a light at the end of all journeys. Hope all is well your way.

Nov 4, 2019 · Stiff Person Syndrome in Brain & Nervous System

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

Oct 5, 2019 · Stiff Person Syndrome in Brain & Nervous System

Hi there, my name is Genevieve, just moved from NJ to GA with recent Dx of SPS. I’m curious if the Plasmapheresis is continuing to help your symptoms?

Jun 11, 2019 · Stiff Person Syndrome in Brain & Nervous System

Suffering now for 7+years. 2012 DX with Fibromyalgia. Misdiagnosed with MS 2018. 2019 Positive Gluten Intolerance, Small Fiber Neuropathy and now Stiff Person Syndrome. Ivig treatments for past 6+months with minimal affect. Neurologist referred me to Hemotologist/Oncologist due to very high GAD-65. Hemotologist/Oncologist recommended whole body pet scan. Now pending insurance for over 2 weeks. Just received call from Hemotologist/Oncologist stating SPS is Neurological and can't understand why my Neurologist referred me to him. He told me he will get in touch with my Neurologist to find out what prompted him to refer me. This was same discussion over 2wks ago in his office. I honestly feel I'm in the twilight zone. I do realize SPS is extremely rare, but can't one of my doctor's atleast point me in the right direction? Any recommendations on who or where to go for this would be appreciated.