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stiff person syndrome

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Unread 02-07-2011, 09:43 PM   #1
bamyx4jc
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Confused stiff person syndrome

hi i just took a blood test i think called gad65 it came back double what it should be i have a appt with my dr to go over test and treatment i was wondering if anyone has stiff person syndrome ad what it does to you ad how you deal with it . they say 1 in a million get it so not sure if i will have any luck thank you
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Unread 03-21-2011, 04:52 PM   #2
Tulips
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Hi

Why did they do this test on you. do you have any symptoms.
which specialty doc did this.

sps is common with people with diabetes and thyroid. do you have any of these.

I am familiar with this cause i have the symptoms but my blood work is negative.
I have all over spasms and cramps and neuropathy symptoms.

GO on www.inspire.com
type sps and you will find great deal of info...

tulips
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Unread 08-07-2011, 12:40 PM   #3
Southern Bell
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Default Any experience with Plasmapheresis

Hi,

I was diagnosed with SPS and MG in 2009. I have found a similar site with communications with people who have MG but no one seems to have both diseases which I understand is very rare. I was hoping this site would have people with more experience with SPS.

I am presently taking five medications just to make it through the day. I have tried six rounds of IVIG which did very little to help either disease. Now my neurologist (who is very conservative) has decided to go the plasmapheresis route. He doesn't know if this will show any improvement. All of his collegues have never seen anyone with both MG and SPS, so there is no experience for him to rely on in the treatment. I'm scheduled for 12 treatments and have completed four so far.

Has anyone tried plasma exchange? If so did it help with your symptoms?

Thanks for any responses.

Southern Bell
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Unread 05-06-2012, 03:31 AM   #4
meltrey@hotmail.com
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Heart Stiff Person, MS, and Lupus

Plasmpherisis helps many patients and I wish you well! I went through a 10 day hospital stay with a treatment every other day. Total of 5 .Unfortunately it triggered my antibodies on an aggressive attack and my Dr. suggested another round.
Will you be outpatient or admitted into a hospital?
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Unread 05-11-2012, 01:19 PM   #5
Southern Bell
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Default Plasmapharesis

I did complete the plasmapharesis treatment - 2 treatments a week for six weeks - back in August 2011 with no results either positive or negative.

I've since decided to change neurologists and have had the luck to meet someone I trust who also has MG and she highly recommends her neorologist. He has had me take another MRI of my brain and neck. He definitely believes that I have SPS but I think he's not so sure about the MG diagnosis. His specialty is MS but he has already questioned the meds that my previous neoro had me on, one of which is very strong and bad for my liver and kidney (Dantrolene). So we are slowly getting me off that med and increasing another med that is usually prescribed for SPS (Baclofen).

I have more faith in this new doctor and believe that he will take more of an interest in me than my previous doctor (who was happy just to let things roll on same as usual).

Thanks for your interest.

Southern Bell
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Unread 08-05-2012, 03:13 PM   #6
Joujou
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Default Have SPS and New to Neuro Talk

Dear Meltrey, My name is "Joujou" and I was diagnosed with SPS in 6/2011.

I was immediately started on IVIG, 90 gm/month, 3 days per week. I was diagnosed in Jacksonville, FL, but diagnosis was confirmed by Dr. Jankovic at Baylor Medical Center. After 9 months, IVIG was discontinued. I have also had type 1 diabetes for 30 years and been on the insulin pump for 26 years. Currently I am on 60 mg of valium and 30 mg of baclofen per day. I am in excrutiating pain every day and am rapidly progressing. I also have severe short term memory loss and use the incorrect words out of context.

I would appreciate any help that you can provide. I just joined Neuro Talk today.

Sincerely, joujou
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Unread 08-25-2012, 10:06 PM   #7
BackwardPawn
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My GAD antibody test came back about 10x normal. They use a combination of plasma exchange and IVIG to treat the actual disease and then I take Baclofen, Valium, and Neurontin to mask the symptoms. Hopefully they can get it under control. I went from using a walker to being able to move around on my own. My still have stiffness and pain, but my neuro is limiting the amount of meds I take so as not to make my Myasthenia worse, as I also have both diseases.
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Unread 11-26-2013, 09:33 AM   #8
clstewart81
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Quote:
Originally Posted by bamyx4jc View Post
hi i just took a blood test i think called gad65 it came back double what it should be i have a appt with my dr to go over test and treatment i was wondering if anyone has stiff person syndrome ad what it does to you ad how you deal with it . they say 1 in a million get it so not sure if i will have any luck thank you
Hi I was just diagnosed as well looking for answers, as in diagnosed YESTERDAY!! I have MS but no active lesions. I am going all over the net looking. Very much in pain right now but nothing new! I have to go Dec 6 for my treatment options.
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Unread 11-26-2013, 02:18 PM   #9
Kitt
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Here's a site concerning it.

http://www.medicinenet.com/stiff-per...me/article.htm
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Kitt

"It is what it is, it's not what it was, it's not what it could have been, it is what it is."

Charcot-Marie-Tooth Syndrome (CMT) The Curse.

AKA Hereditary Motor Sensory Neuropathy (HMSN).

"I was once like you and you will be like me."

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"Thanks for this!" says:
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