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Which advice would you give to someone who has just been diagnosed with Stiff Person Syndrome?
Advice for the newly diagnosed with Stiff Person Syndrome, written by people who have lived it. What they wish they had known on day one.
Research, research, research. Constant new combinations of treatments. Go to a big teach/research facility where every idea is available.
Posted Feb 28, 2017 by Loretta 1000
Find another sufferer as only another sufferer knows and understands, which is why I said earlier, join a support group. Advice on a one to one situation gives a more personal touch.
Posted Mar 1, 2017 by Liz 1000
Stay off the internet until you've learned as much as you can from your doctor. A lot of the information on the Internet is outdated and no longer relevant. It's more likely to scare you than help you.
Also don't immediately feel like you've been issued a death sentence. You may have to make changes to your life but you'll still be able to live a good life if you try.
Not everyone in your life is going to understand what is going on with your health. Stay away from negative people. Stress is especially bad for Stiff Person.
Also don't immediately feel like you've been issued a death sentence. You may have to make changes to your life but you'll still be able to live a good life if you try.
Not everyone in your life is going to understand what is going on with your health. Stay away from negative people. Stress is especially bad for Stiff Person.
Posted Mar 2, 2017 by Michelle 1500
When I was diagnosed I was relieved because they finally found out what was wrong with me and we could treat it as such. Don't let people bring you down. Embrace the "I hope you feel better" "I hope you get better soon" because others just don't understand. I have a positive attitude as a person and always have so that has helped me but letting people be there for me and not being so stubborn and independent has helped. Ive had to let others help and not feel bad about it. I never received "advice" per say because it is so rare, I had to cope on my own and used it as an opportunity to be there for others to try to give advice and help others with SPS is BS on Facebook and our website.
Posted Mar 4, 2017 by Jasmine Nardone-Franco 1430
Life expectancy is much better than many other diseases. Symptoms fluctuate by the day and even by the hour. Find a good neurologist who has treated this disease. Consider a baclofen pump and diazepam, both of which help with the lack of GABA in your central nervous system.
Posted Dec 24, 2021 by Pathdoc 2500
Translated from spanish
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Depends on the degree of impairment and your age. Typically affects patients between 30 and 40 years. The use of the diazepam gives good results. There are to endure, in function of the profession, as much as possible to get a good retirement pension
Posted Sep 18, 2017 by Fernando Vela Vallejo 3250
