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what happens when your lower back is in pain continually? I have stiff

Posted by sandy1954 @sandy1954, Jul 8 10:39am

I have stiff Person syndrome. i've had it for twenty years. I have igiv infusions. they slow it down. I can't walk i've lost my dependency. my hands are losing some motor skills. if you have any questions please just ask.

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fourleaf | @fourleaf | Jul 28 7:08am

I do not have stiff Person syndrome, but I have very stiff tense neck - contributing factor to migraines.
I read where it mentions stiff Person syndrome "treatment: There is no cure, but symptoms are managed with benzodiazepines (e.g., diazepam), muscle relaxants (e.g., baclofen), and intravenous immunoglobulin (IVIg). Physical therapy is also crucial for maintaining mobility." John Hopkins Medicine

My Neurology referred me to Physical Therapy - Dry Needling (Acupuncture with electricity) - WONDERFUL After 1st treatment, first time in 4 years I did not have migraine or headache (lasted about 4 hours) - also mobility was little better. With weekly (sometime 2x weekly) treatments, the relief was longer. After 9 months, I only go once a month - I can feel stiffing a couple days before next treatment. (I pay $23.00 for the needles and insurance pays for the PT part) The Neurologist was very pleased with results and added Baclofen (muscle relaxer) 10 mg 3x/ day (and other prescriptions). The PT also gave me a number of stretching exercises. I call it my maintenance program.

Best wishes,
🍀

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stonewheel | @stonewheel | Jul 28 8:50am
In reply to @sandy1954 "I have stiff Person syndrome for 15 years. the ivg infusions arn't helping my back any..." + (show)
Profile picture for sandy1954 @sandy1954

I have stiff Person syndrome for 15 years. the ivg infusions arn't helping my back any more. thank you for the suggestion. i'll look into it and give it a try.

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@sandy1954
Hi Sandy. Pain is not fun. Please describe the pain. Where exactly? Is it symmetrical (both sides)?
Is it worse at certain times of the day?

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sandy1954 | @sandy1954 | Jul 29 10:46am

it's my lower back. I can't walk either it sucks but my daughter helps.

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sandy1954 | @sandy1954 | Jul 29 11:01am
In reply to @fourleaf "I do not have stiff Person syndrome, but I have very stiff tense neck - contributing..." + (show)
Profile picture for fourleaf @fourleaf

I do not have stiff Person syndrome, but I have very stiff tense neck - contributing factor to migraines.
I read where it mentions stiff Person syndrome "treatment: There is no cure, but symptoms are managed with benzodiazepines (e.g., diazepam), muscle relaxants (e.g., baclofen), and intravenous immunoglobulin (IVIg). Physical therapy is also crucial for maintaining mobility." John Hopkins Medicine

My Neurology referred me to Physical Therapy - Dry Needling (Acupuncture with electricity) - WONDERFUL After 1st treatment, first time in 4 years I did not have migraine or headache (lasted about 4 hours) - also mobility was little better. With weekly (sometime 2x weekly) treatments, the relief was longer. After 9 months, I only go once a month - I can feel stiffing a couple days before next treatment. (I pay $23.00 for the needles and insurance pays for the PT part) The Neurologist was very pleased with results and added Baclofen (muscle relaxer) 10 mg 3x/ day (and other prescriptions). The PT also gave me a number of stretching exercises. I call it my maintenance program.

Best wishes,
🍀

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@fourleaf
so sorry about your headaches. I take diazepam also. the exercise j have but never do them. now I think I will. I heard the acupuncture might help.

thanks for your help

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sandy1954 | @sandy1954 | Jul 29 3:00pm

my motor skills are going too. I hate losing my dependency. I live with my daughter thank God for her. do you have stiffness in your body? thanks for talking to me

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Randy Shields | @randallshields56 | 23 hours ago

This sounds like my Sister's symptoms. She's planning on 4 surgeries this upcoming winter and in the process of getting moved to a new home.

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sandy1954 | @sandy1954 | 16 hours ago
In reply to @randallshields56 "This sounds like my Sister's symptoms. She's planning on 4 surgeries this upcoming winter and in..." + (show)
Profile picture for Randy Shields @randallshields56

This sounds like my Sister's symptoms. She's planning on 4 surgeries this upcoming winter and in the process of getting moved to a new home.

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@ randallshields56
I have stiff Person syndrome. there is no cure. I hope your sister's surgeries make her better.

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Randy Shields | @randallshields56 | 4 hours ago
In reply to @sandy1954 "@ randallshields56 I have stiff Person syndrome. there is no cure. I hope your sister's surgeries..." + (show)
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@ randallshields56
I have stiff Person syndrome. there is no cure. I hope your sister's surgeries make her better.

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@sandy1954
Much appreciated, thank you 😊 sending prayers you're directing c have a blessed day today 🙏

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