Autoimmune Diseases For Hashimoto’s thyroiditis (underactive thyroid), Graves’ disease (overactive thyroid), Lupus, Crohn's disease, all types of arthritis, and all other autoimmune diseases. [Multiple sclerosis (MS) and Myasthenia Gravis (MG) have their own forums below.]


advertisement
Reply
 
Thread Tools Display Modes
Old 02-07-2011, 09:43 PM #1
bamyx4jc bamyx4jc is offline
Junior Member
 
Join Date: Sep 2006
Posts: 24
15 yr Member
bamyx4jc bamyx4jc is offline
Junior Member
 
Join Date: Sep 2006
Posts: 24
15 yr Member
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
bamyx4jc is offline   Reply With QuoteReply With Quote

advertisement
Old 03-21-2011, 04:52 PM #2
Tulips Tulips is offline
Member
 
Join Date: Oct 2010
Posts: 148
10 yr Member
Tulips Tulips is offline
Member
 
Join Date: Oct 2010
Posts: 148
10 yr Member
Default

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
Tulips is offline   Reply With QuoteReply With Quote
Old 08-07-2011, 12:40 PM #3
Southern Bell Southern Bell is offline
Member
 
Join Date: Apr 2011
Posts: 103
10 yr Member
Southern Bell Southern Bell is offline
Member
 
Join Date: Apr 2011
Posts: 103
10 yr Member
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
Southern Bell is offline   Reply With QuoteReply With Quote
Old 05-06-2012, 03:31 AM #4
meltrey@hotmail.com meltrey@hotmail.com is offline
Junior Member
 
Join Date: Apr 2012
Posts: 6
10 yr Member
meltrey@hotmail.com meltrey@hotmail.com is offline
Junior Member
 
Join Date: Apr 2012
Posts: 6
10 yr Member
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?
meltrey@hotmail.com is offline   Reply With QuoteReply With Quote
Old 05-11-2012, 01:19 PM #5
Southern Bell Southern Bell is offline
Member
 
Join Date: Apr 2011
Posts: 103
10 yr Member
Southern Bell Southern Bell is offline
Member
 
Join Date: Apr 2011
Posts: 103
10 yr Member
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
Southern Bell is offline   Reply With QuoteReply With Quote
Old 08-05-2012, 03:13 PM #6
Joujou Joujou is offline
New Member
 
Join Date: Aug 2012
Location: Jacksonville, FL
Posts: 1
10 yr Member
Joujou Joujou is offline
New Member
 
Join Date: Aug 2012
Location: Jacksonville, FL
Posts: 1
10 yr Member
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
Joujou is offline   Reply With QuoteReply With Quote
Old 08-25-2012, 10:06 PM #7
BackwardPawn BackwardPawn is offline
Member
 
Join Date: Apr 2011
Posts: 211
10 yr Member
BackwardPawn BackwardPawn is offline
Member
 
Join Date: Apr 2011
Posts: 211
10 yr Member
Default

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.
BackwardPawn is offline   Reply With QuoteReply With Quote
Old 11-26-2013, 09:33 AM #8
clstewart81's Avatar
clstewart81 clstewart81 is offline
Junior Member
 
Join Date: Nov 2013
Location: Alabama
Posts: 49
10 yr Member
clstewart81 clstewart81 is offline
Junior Member
clstewart81's Avatar
 
Join Date: Nov 2013
Location: Alabama
Posts: 49
10 yr Member
Default

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.
clstewart81 is offline   Reply With QuoteReply With Quote
Old 11-26-2013, 02:18 PM #9
Kitt Kitt is offline
Grand Magnate
 
Join Date: Aug 2006
Posts: 4,438
15 yr Member
Kitt Kitt is offline
Grand Magnate
 
Join Date: Aug 2006
Posts: 4,438
15 yr Member
Default

Here's a site concerning it.

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

--------------------------------------------------------------------------------------------------------

"It is what it is."
Kitt is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
clstewart81 (11-27-2013)
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Stiff-Person-Syndrome/Stiff-Man-Syndrome? Any info? sharry50 Autoimmune Diseases 4 04-21-2012 01:10 AM
Scared Stiff chefginny Myasthenia Gravis 4 12-29-2009 08:09 PM
Stiff Necks Peg24 Thoracic Outlet Syndrome 18 01-01-2008 01:44 PM
Stiff Neck! Kathi49 Spinal Disorders & Back Pain 9 10-28-2006 07:33 AM


All times are GMT -5. The time now is 06:36 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.