Health Interests
Autoimmune diseases, Bone, joint, and muscle disorders, Chronic pain, Neurology (brain and nervous system)


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Posts (22)

Nov 28, 2019 · Referral to Mayo declined for Autoimmune or Unknown Condition in Autoimmune Diseases

Nope. I’ve learned it’s quite common.

Nov 26, 2019 · Stiff Person Syndrome in Brain & Nervous System

Thanks so much for all the information. Considering between me and my employer, I’ve paid SS over $380K, and I could technically retire in 5 years, this is really disheartening to hear. I do appreciate hearing your story, though, so I’m more reaped for what’s ahead. Have a great Thanksgiving holiday. Bryan

Nov 23, 2019 · Referral to Mayo declined for Autoimmune or Unknown Condition in Autoimmune Diseases

Sorry to hear about your experience with Mayo, but can tell you that’s the exact same thing that happened to me. Really aggravating. I‘ve always heard Mayo is the lace to go when your local doctors run out of ideas. Definitely not the case. I wish you all the best going forward. ~B

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

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

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

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

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

Great question. The more I read about SPS, the more I think that might be the “undiagnosed autoimmune disorder” that I wrestle with; alone with osteoarthritis. I’ve actually seem 5 different neurologists, though, and other than confirming I have peripheral neuropathy, they’ve been no help. I believe two of the neuros specialize in autoimmune disorders. So I’ve basically stopped chasing the neurological side and continued seeing my rheumatologist.

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

Thank you Sarah!

Aug 4, 2019 · How to Prevent Osteoarthritis in Knees in Bones, Joints & Muscles

Hi @uirshad23, sorry to hear about all your knee problems. My OA is in hips (totally destroyed and now bone on bone), spine and neck. Unfortunately, I don’t know anything regarding the knee, but I do know I’ve been told if I’d tried some things when I still had space in my hips, it might have delayed the degeneration. Hopefully you will have some options as you’re young and it sounds like you still some space in there to work with. I wish you all the best going forward. Stay strong. BD