stiff person syndrome

By docmaus
Posted today at 4:51 am · 0 replies
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RecommendationsRecommendPrintReport postIt is like having multiple sclerosis, parkinsons, and tetness. most of all symptoms show up with all three sooner or later. They are sometimes inter-mitent. I get my parkinson shakes usually first thing in the morining, then about an hour later my legs start to wake up and i can usually tell what kind of day it is gonna be. Of cource that is not all there is the bladder leakage, embarrassing out burst of sudden pain, like someone shoving a real needle through you acheles tendon. i hope i spelled that right, anyways. You ultimately go to your dr. and have a blood test for you gap. it will take levels of you gad antibodies. Now some diabetic type one people have a little higher than normal but when your up around 87.6 it is to late to turn back. Normal i beleave is from 0 to 1.75. The best thing you will eventually go to at all eventually is valume. If you take 40 to 60 mg in one day and get so tired you pass out, then you do not have sps. we can take that much because our bodies are craving an enzyme in the valume so it is like vitamins to us. There is classical stiff man disease and the plus. classical stiff mans disease life span from what i have learned is about twenty years. however the plus is only three years. it also is confirmed with a test but you will usually notice it by the trademark 'stiff man jerk' mine is in my left shoulder and right leg. Pops my shoulder out of socket occasionally. Then there is the encepalophothy, which causes the night sweats so bad your completely soaked. the migraines and fever. well my nick name is doc maus so right if you want.

By Adwyer
Posted May 21, 2009 at 2:55 pm
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Hi DocMaus,
I am having trouble understanding stiff persons disease. Is it a neurological condition only in brain or muscular condition? Sounds like it might be both. Since this is so rare I would use myself as a guinea pig and try something. It is suspected that GABA is substanially lower in the brain and probably the muscles too. If I were you I would buy some GABA from chemical company like Sigma mix a small amount of it with a compound called DMSO. Apply this to the skin. It will smell really bad for a little bit. The DMSO is solvent that can make any compound pass directly through skin, muscle and nerves. I don't know if this would be helpful or not but it is definetly worth a try to give the GABA to the effected muscles. If you have any questions feel free to email directly aleck.dwyer@thomson.com.

Hope this suggestion is helpful,
Thanks,
Aleck

By Domenick
Posted May 22, 2009 at 11:36 pm
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SPS is an autoimmune disease. There is no cure. If you have been diagnosed with SPS then you are probably diagnosed with diazapam. Some patients respond to a treatment called IVIG. This disease is both in your brain and spinal cord. Because it is so rare most doctors have never heard of it. If I may suggest google SPS and do some research. The Mayo clinic has a pretty good understanding. Please just keep googling and you will find some good resources and some support groups that are good. Very few people have died from SPS. In most cases once you Neurologist gets your SPS under control through meds it usually doesn't get any worse. it is very painful so you will usually have a pain script as well. Good Luck and God Bless

Domenick

By Celise65
Posted June 11, 2009 at 7:21 pm
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Hello,
I also have sps, and have terrible freezing episodes where my body will stop in place like a statue which can last from minutes to hours with a great deal of pain. Extremes in weather especially heat makes them worse. I also experience spasms to touch and some sounds. I have difficulty walking and use a walker, wheelchair, or will have to hold on to someone. I can no longer drive or work, (its been two years since my diagnosis) and have been waiting for approval for disability. Drs. have tried IVIG therapy, however I had side effects of high fevers, chills, and other rejection symptoms. Also tried Atavan 5mg, flexerill, and currently diazepam 10mg. So far I have no relief. My current neurologist stated that she will continue to increase the diazepam slowly since I am so sensitive to many meds. I heard that Diazepam/Valium can be addictive. Does anyone experience these same symptoms? What has worked best for you? Thanks,
Celise

By docmaus
Posted June 12, 2009 at 2:02 am
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yes but there is two kinds of sps, you have the classical and what i have which is the R plus or something like that. it has a three year ave. life span. there are three stages. the last which is what i am going into, you start to get encephalopothy in the brain which makes your, usually left shoulder jerk. all this info can be obtained by a dr. named mary or beth murrinson from john hopkins, you can google beths name. anyways it is no fun, i can hardly walk anymore and the migrains kill. i dehydrate alot and no having heart problems. well any q"s just drop a line.

By docmaus
Posted June 12, 2009 at 2:12 am
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hi well first thing is diazapam does work, but baclofen works better for me, however i take both, plus nueroton is very good,, sounds like you need to find out if you are classical or the plus sps. there is a big difference. i have the plus which carries an ave. three year life span with three stages. then there is the classical sps with a 20 year ave. i can live in hot water!!! i also have diabetes type one, hypothyroidism, high blood preasure, an ulcer, and a number one node block in my heart, so far no clots. and as far as pain goes i take the FAST acting 15 mg's of morphine. well if any other questions you can email me at georg_lm@live.com, ok. later me...

By alix
Posted June 12, 2009 at 4:26 pm
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Hello,
I also have a sps, not so important than you and I take diazepam (lormetazepam ) and valium.
I have taken 12 mg of lormetazepam a day during 5 years and 70 mg of valium during a year.

Than I have found an acupuncturist. In less than 15 days I have stopped all the valium and lormetazepam.

I think, you become addictive only if you take it when you do not really need it. I needed valium because I was so stiff I could not breath and walk in the same time, and lormetazepam to stop the spasms.

When I cannot see my acupuncturist I begin again with valium and lormetazepam and when I see him again I forget the drugs.

By Betty-Oops
Posted June 12, 2009 at 5:27 pm
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Please check out the website, "Living With Stiff Person Syndrome," the Informative Links page:
http://www.livingwithsps.com/l-links.html

In the context of diazepam "addiction" and SPS, there is a difference between dependence and addiction, like insulin to diabetes. Some can abuse their medications: pain meds, benzos, but SPS is for life, requiring treatment.

SPS is a disorder of the central nervous system. No topical cream can penetrate the blood/brain barrier to address the compormised neuroinhibitory (body's braking system) in SPS. I do not know if it can temporarily relieve muscle discomfort?

To my very limited layperson knowledge, there are several variants of SPS:

Classic SPS (positive GAD antibody, lordosis, torso spasms, and insulin-dependent diabetes.)

===

SPS Plus (three types?)

1) Focal or Stiff Limb SPS (usually GAD negative, but could be positive) primarily affecting the legs.

2) SPS Cer (affecting the cerebellum, different symptom manifestations.)

3) PER or PERM (progressive encephalomyolitis with rigidity and myoclonus. 1-3 years.)

===

Paraneoplastic SPS (gephyrin antibody. Onset usually with breast or lung cancer. Prognosis varies with cancer.)

===

Each SPS variant and afflicted individual will respond differently to treatment based on progression, severity of symptoms, other underlying health issues, and personal response to a med.

God bless.

By Betty-Oops
Posted June 13, 2009 at 2:57 pm
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Some girls collect jewelry, crystal, or dolls. I collect SPS literature. I cannot provide articles due to copyright, but I can give you some PubMed abstract links:

Classic (Stiff Trunk), Stiff limb (focal), and PER:

http://jnnp.bmj.com/cgi/content/abstract/65/5/633

==========

Paraneoplastic Stiff Person Syndrome also grouped with Paraneoplastic Neurological Syndromes (PNS), neurological disorders associated with cancer:

http://www.ncbi.nlm.nih.gov/pubmed/18971449?ordinalpos=6&itool=EntrezSystem 2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDoc Sum

==========

SPS-CER, Stiff Person Syndrome with cerebellar disease:

http://www.ncbi.nlm.nih.gov/sites/entrez

==========

I am not a medically-qualified professional, just a lady with 20 years of SPS living, sharing experiences with others, and reading, lots of reading. I find it to be in my best interest (survival/coping 101 - boot camp basics) to understand my diagnostic enemy, (SPS).

I hope you find this to be of helpful interest and encourage you to discuss medical accuracy with your healthcare provider. ;-)

By Celise65
Posted June 13, 2009 at 7:21 pm
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I will definately consider accupucture, when you think about how it relates to the different pressure points in relieving pain, it makes sense.

Thanks!

By Betty-Oops
Posted June 28, 2009 at 5:09 pm
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Hi Aleck,

Your intentions may be good, but if you do not understand SPS: pathogenisis, symptoms, history, & progression; how can you suggest a remedy?

Spasm severity, with SPS, can rupture muscles, dislocate joints, break bones, or cause respiratory/cardiac arrest. Episodes of full-body spasms can last for hours. Sensory triggers exacerbate symptoms of rigidity and spasm, predisposing one to unprotected falls, possibly resulting in serious injury.

Stiff Person Syndrome has many variants...one involving the cerebellum of the brain, SPS-Cer, (autonomic neurological problems), and another with cancer onset, breast or lung, (prognosis dependent on cancer therapy).

Some with SPS have an autoimmune manifestation with an antibody to GAD (glutamic acid decarboxylase), an enzyme necessary for the synthesis of GABA (gamma-aminobutyric acid), the body's main neuroinhibitory system...continual firing of the nervous system...agonist and antigonist muscles simultaneously...no brakes. It hoits! :)

Beneficial response to several classifications of medications vary with syndrome variant, accompnaying autoimmune illness, syndrome progression, and individual response to a med.

The following website has many informative links explaining SPS and treatment options to help you understand the syndrome. I hope you find it helpful.

www.livingwithsps.com

“Learn from yesterday, live for today, hope for tomorrow.”

By Adwyer
Posted June 28, 2009 at 10:54 pm
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Hi Betty,
Since there are so few researchers actually doing research on the rare diseases. Additionally, when a good reasonable solution is found so few dollars are committed to get FDA approval. I want to encourage the people to explore options scientifically and discuss them with their doctors. I want the suffers of rare diseases to be empowered with knowledge to fight and give them ideas to fight with and not just calmly accept their fate or trust that the government will take care of them. I want them fight. I think they are getting a raw deal in life and I want them to learn the organic chemistry and molecular biology that they can do something about there lot in life. Patients with rare diseases are just as smart as the doctors that are treating them. The patients are highly motivated to learn and have the capablility to solve. This is my soap box philosophy. Sorry got long winded for a second.
The reason I suggested suggested GABA replacement therapy is because the root cause of the problem appears to be the autoimmune attack of the enzyme that produces GABA. In my mind there are two ways to solve the problem. Either attempt to increase natural GABA production in the brain as currently being pursued or artificially increase the concentration of GABA directly. The use of benzodiazapines in order to increase the GABA production seems to be ineffective as the disease progresses.
The use of artificial GABA to directly penetrate nerve tissue and be absorbed and stored for later use seems to be a reasonable suggestion. This could actually be done using liposomal intranasal delivery of the GABA. This seems to be a reasonable solution to rebalance the loss of GABA as a result of the loss of GAD. Anyway it is only an idea worthy of discussion.
Thanks for listening to me.
Aleck

By confused13
Posted August 15, 2009 at 5:56 pm
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I'm trying to figure out if I have SPS and I did make an appointment with my nero doctor, however, it is going to take over a month to get an appointment. So I was hoping someone could help me. I have had very strange symptoms that no one has been able to help for a long time. I have tightness everywhere in my body. I also get electical shocks all over my body. I get crushing chest pain that comes and goes and my throat seems to get spasms in it. I originally got to the point where my limbs were so heavy and head and neck so heavy I could barely stand up and had the hardest time walking. I laid in bed for weeks. The eventually thought I had anxiety and put me on medicine for that and it did help relieve all the stiffness. However, I didnt want to stay on addictive medicine so I got off it gradually. However, all the stiffness came back and I was in so much pain. I went to the mayo clinic and they told me I had Fibro and was put on Lyrica however I still was not feeling well. I saw a Rhematologist and he said even though I didn't test positive for RA that since he gave me predisone and it helped that I must have it and he put me on RA medicines. However, I am still really stiff everywhere from my head all the way down to my feet. I saw a tv show on Stiff Person Syndrome and was convinced that is what I had. My problems all started because of my stomach and throwing up and I knew that it wasnt me wanting to throw up but that I had spasms in my throat and stomch.

Anyway, I had already been put on cymbalta for the fibro when I saw the TV show and had noticed improvement. I used to be completely numb and now I could feel parts of my body again. My problem is that the stiffness seems to lessen and get more severe. I'm always pretty stiff but it does seem to ease up some. I do not fall over or shake and after reading a bunch of stuff online, I'm not sure what I have do you guys think it is SPS or something else? Thanks for your help, I appreciate it

SO CONFUSED

By loupjr450
Posted August 16, 2009 at 8:59 am
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i have been diagnosed with sps and myasthenia gravis. the myasthenia caused my head to feel like i couldn't hold it up and it weighed about 100 lbs. that is a rare sign but its mg. whats really sad is that i had that sign in 2006 and until i saw a dr in mt sinai in manhattan no one knew ahat it meant. my gad # was 89.5. ihave tried lido derm patches on muscles,dmso , freeze patches i now use a tens macine, seems to help the best. i was getting ivig for the whole of 2008 and i would wake up every night soaking wet, this was in tha hospital, no one knew why, now i find out side affect of sps. it is such a shame that due to our own research and constant talking to other people that we know more than most of our drs. i actually was in nyack hosp yesterday to visit someone and saw a neuro that i use to see before i went to mt sinai and we talked about my sps and mg and he told me i knew more than most drs. you can get disability but when ss sends you to their dr be sure to bring emg reprt gad report and acetycholine report if you have mg. i also brought letter from dr sivak at mt sinai confirming both diagnoses, got ss disability in 3 months. living with mg is easily managed, living with the sps is tuff because most things only help or relieve symtoms for short while and then the pain in my left leg muscles is out of this world and i'm back laying down. the tens machine works the best.

By confused13
Posted August 19, 2009 at 12:12 am
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I seem to have a lot of symptoms that all of you do. I started to take cymbalta for pain and it has helped, is that typical for sps or no? i really think I have sps but idk and im not sure why the cymbalta is helping some...any idea why? because i don't think this is fibro, but idk? any ideas

By Tinman
Posted August 19, 2009 at 11:28 am
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Hi I am Tinman, for obvious reasons except I am female. I was diagnosed after 15 years. Just for curiosity go to You Tube and search out-gibblegeezer- that is me. Watch the video with the leg. This is an example of mild attacks I go through daily. I filmed it because I was tired of being doubted. I could not film the most painful ones and I was too embarrassed to have another film it. The pain makes me cry and scream. It is also under -medical oddities- but further down, and- Wendy's video 0001. Just find the leg picture and click on that. They told me this is SPS.

By Earthling
Posted August 19, 2009 at 9:42 pm
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Hope this helps someone... A doctor in the Dept. of Neurology at Wake Forest Univ., Dr.James Caress, is doing studies on ultrasonography of nerves for diagnosis. He has written many papers (on Pub Med).
His email is: neuroresearch@wfumc.edu
or their research phone line: (336) 716-5840.
Also found some neuro-movement related clinical trials on Clinical trials.gov . Most are for Parkinson's, but look at #'s
1, 5, 17, 35, 44, 119, 294, 297, and 299 to see if any of them are applicable. Good luck!

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