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Stiff-Person-Syndrome/Stiff-Man-Syndrome? Any info?

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Old 01-15-2008, 10:56 PM   #1
sharry50
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Confused Stiff-Person-Syndrome/Stiff-Man-Syndrome? Any info?

Hi to all - I'm a new member and wondering if anyone has info about SPS/SMS (Stiff-Person-Syndrome/Stiff-Man-Syndrome) It was originally named Stiff 'Man' Syndrome because it was diagnosed primarily in men, but that has changed, hence the 'Person' in the title instead.

It is categorized as a neurological disorder and the symptoms are caused by problems in the central nervous system. The patient suffers from terrible muscle tightness and spasms. It causes you to be 'stiff' and it makes it difficult to impossible to move normally, plus it's painful. They believe it's an autoimmune condition.

I have small fiber neuropathy and autonomic nerv sys dysfunction. I'm in alot of pain all over my body and have the terrible never ending muscle tightness and spasms from neck to toe. No one has been able to diagnose the muscle symptoms. My muscle biopsy was normal.

Just wondering if anyone knows anything about SPS. I came across it in one of my desparate internet searches for small fiber neuropathy answers. It's a rare disorder and is linked to sfn.

Thanks for any light you can shine on this!

Sharry50
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Old 01-18-2008, 01:07 AM   #2
HEperson
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This is from a medical text. Hope it's not too confusing:
SPS is a rare slowly progressive disorder manifested by tightness, stiffness, and rigidity of certain muscles with superimposed painful spasms that may be accompanied by increased sweating and increased blood pressure. Examination may show tight muscles, a slow or careful gait, and hyperactive reflexes. Many patients have diabetes. It is considered an autoimmune disease, and in some cases may be a rare complication of breast or other cancer. In some cases, the blood contains antibodies against glutamic acid decarboxylase, which is involved in the synthesis of the neurotransmitter, GABA. Treatment is with drugs that can increase GABA transmission, such as valium.
A qualified neurologist should be able to check for it.
I wish you the best of luck getting an answer to your suffering.
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Old 01-18-2008, 05:52 PM   #3
dahlek
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Default I hope you will

take a look at the Peripheral Neuropathy boards further down the list of forums. I hope you will take a look at the 'Stickies' at the top of the page. While the information there isn't organized, I will give you lots of insights into the processes of diagnosing PN pain in relation to many, many other neuro/pain issues.

Many who have varying types of neuropathies do experience the cramps, tightness and all as you describe. If you read in some of the PN postings, you will find out that vitamins and minerals can play a great role in providing relief.

I have ask you about how you had the onset of your problems. I'm no doc...but I myself DO connect my onset to a long bout of pneumonia a few months before my PN pain started. After many docs and lots of tests I was diagnosed with CIDP-sometimes referred to as Chronic Guillame Barre [tho it's not really-they're sort of cousins]. For me IVIG [very expensive-luv my insurance co!] helps immensely. I couldn't go the steroid routes.
I ask because GBS and CIDP often affect the autonomic systems in many varied ways...no one person is the 'same' as another in symptoms.GBS & CIDP are autoimmune issues, as it Hashimoto's thyroid and a quite a few other conditions.

Here Is the Nat. Institutes of Health definitions, etc of Stiff Man's..
http://www.ninds.nih.gov/disorders/s...tiffperson.htm

That should start you on your way...it does say it affects more women than men tho?
Also use the search feature on the top blue bar and key in a search for 'Muscle cramps'. You will find that more suffer from this all than you think. Do read around the various forums on the board - you jusstmight be surprised and gain extra insight into your own problems. I hope this all helps you... If I come up with some good sites...I'll post them here - j
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Old 03-03-2009, 06:40 PM   #4
cbb12
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Sharry,
I have just been diagnoses with SPS. I had a GAD antibody blood test (my Gad antibodies were extremely high) followed up by EMG and now I will be under going the IVIG. This is very rare and hard to detect. I too found it on the internet. My primary care physician sent me to a Vanderbilt neuromuscular neurologist. I am her first SPS but in med school she delt with a patient that had it. This neorologist treats people with ALS and other types of neoromuscular diseases. I tell you this so you don't go to 50 different neorolists. This is considered an autoimmune disorder but as with me can have related severe anxiety disorder. I have the fear of falling as I get stiff and have the very painful spasms. Needless to say I am a self fulfilling prophecy. For 12 years I have suffered with a diagnosed panic disorder that kept me from doing anything. I cannot even get around in my home. No one could understand my panic presentation I have been trying to find the right meds to relieve the panic. In actuality, the SPS came first and the fear of falling came later and got worse as the SPS got worse. I am told they very often go hand in hand. I will always have the panic but I have to tell you that since I have the correct diagnosis, things that use to set off my panic no longer bother me as much.

I hope this helps. Good luck.
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Old 04-21-2012, 01:10 AM   #5
meltrey@hotmail.com
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Quote:
Originally Posted by sharry50 View Post
Hi to all - I'm a new member and wondering if anyone has info about SPS/SMS (Stiff-Person-Syndrome/Stiff-Man-Syndrome) It was originally named Stiff 'Man' Syndrome because it was diagnosed primarily in men, but that has changed, hence the 'Person' in the title instead.

It is categorized as a neurological disorder and the symptoms are caused by problems in the central nervous system. The patient suffers from terrible muscle tightness and spasms. It causes you to be 'stiff' and it makes it difficult to impossible to move normally, plus it's painful. They believe it's an autoimmune condition.

I have small fiber neuropathy and autonomic nerv sys dysfunction. I'm in alot of pain all over my body and have the terrible never ending muscle tightness and spasms from neck to toe. No one has been able to diagnose the muscle symptoms. My muscle biopsy was normal.

Just wondering if anyone knows anything about SPS. I came across it in one of my desparate internet searches for small fiber neuropathy answers. It's a rare disorder and is linked to sfn.

Thanks for any light you can shine on this!

Sharry50
Anti GAD test confirms SPS. I was diagnosed 12/11
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