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stiff person syndrome

docmaus
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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.

Explore topics in this discussion:

Cancer Falls Baclofen Morphine Anxiety Chemotherapy Diazepam Movement disorders Myoclonus Stress Fever Diabetes Multiple sclerosis Pain ALS Lyrica Rare diseases Valium Lung cancer Myasthenia gravis Hypothyroidism

28 replies

HopefulMargie

I just joined this site on behalf of my 58 year old mom that was recently diagnosed with SPS after three years. I wanted to provide you with a little bit of her background in the hopes she can connect with some of you for support.

She was first diagnosed with opsoclonus-myoclonus and was treated with IVIG, retiximab (sp?), and steroids. She responded well to these treatments last year, but it exacerbated her type 2 diabetes to the doctors stopped then. Then in 2/09, the stiff person syndrome symptoms started appearing (different then the myoclonus eye fluttering and speech impairment previous to this). She can no longer walk and is now having trouble moving her arms. Stress triggers the attacks. She is on heavy doses of adavan (sp?), but is supposed to see a specialist tomorrow for a second opinion on treatment options.

Questions for you:
- Do any of you manage to live independently without anyone else, but with some assistance from visiting aides/nurses? I know this depends on your symptoms or possibly the type of SPS you have, I suppose.
- Do any of you live in a nursing home or receive 24/7 care, if not from family members. I live across the country from her and am trying to figure out how she can get the care she needs, especially since seems to be going into and out of the hospital every few weeks.
- Do any of you use homeopathic remedies like accupuncture or even gluten free diets? Do these seem to help?
- Does it seem difficult to get approved for frequent IVIG treatments.

Thanks in advance for your thoughts. I will be sending her this link and am hoping she can post soon herself.

Hopeful daughter.

legend13

Has anyone been diagnosed with SPS with a clear EMG and negative on the bloodwork? I am going to be moving on to another new Neurologist to try and find out what my neuromuscular disease actually is. Boy I love seeing a million doctors. I just want to wake up one morning and feel like a rested!

Lsdad

Has anyone else noticed a common co- incidence of Stiff Person/Man Syndrome and chemotherapy? My daughter was diagnosed with Multiple Sclerosis and recieved a radical treatment involving chemotherapy only to get Stiff Person / Man Syndrome a year later. I've noticed a lot of SPS/SMS cases involve chemotherapy too.

Lsdad

Unfortunately I have a great deal of experience with Stiff Person Syndrome because my daughter has been struggling with it for three years. NOTE: it's called Stiff Man Syndrome in much of the world so a google of: stiff syndrome person OR man is the most productive.

legend13

Just looking for some clarification. My EMG doesn't show signs like some of the websites are saying SPS shows. I am also waiting for my bloodwork to come back so I don't have any answers there yet. I have muscle twitches or mini spasms. Basically when I am at rest my muscles will just spasm or twitch. They aren't painful most of the time but can be. My other symptoms are very similar to what I am reading on SPS but with a clear EMG does that mean I don't have SPS? Also my muscle biopsy 8 years ago showed abnormal muscle cells but didn't match anything. Would SPS have showed up in that also? Any forsight would be greatly appreciated!

Betty-Oops

To Confused,

It is scary and difficult to have unexplained symptoms without a diagnosis. I hope you get a diagnosis.

Rigidity, by itself, is a common symptom shared by many neurological or movement disorders. Rigidity can be very painful.

A 'general' description of SPS symptoms is listed at this link:

http://www.thebrainmatters.org/disorders/index.cfm?event=view&disorder_id=1 070

I have rigidity, a fixed lordosis, body or torso spasms, diabetes, & intense sensitivity to external triggers (things that set off my spasms) like a fear of open space, emotional overload (good & bad), sense of hurry, easily startled - just for starters. The increased symptoms of unexpected triggers will make me fall.

Spasms and rigidity are two seperate symptoms, but they love to hang out together. Pain & suffering - $5,000 - Judge Judy. I have my case documented and am settling for chump change.

Earthling

Hi, Sorry, I took the email address off a study... I found another one:

jcaress@wfubmc.edu

Hope that one works (left out the "b" for Baptist on the previous one. ) His profile is on a website at:

http://www1.wfubmc.edu/neurology/Faculty.edu


I posted here so others will also have the corrected
info. I hope Dr. Caress doesn't mind me sharing his
info... it's hard to find US doctors who are involved
in this kind of problem... other than Parkinson's or ALS.
It seems that many of them are inter-related or
associated with autoimmune problems.

Domenick

Hi Earthling,
Thank you for the information. I tried to send him an email with the email you gave and it came back as bad. Please verify. My personal email is domenick.reese@att.net to make communication easier

Domenick

Earthling

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!

Tinman

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.

confused13

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

loupjr450

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.

confused13

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

maux

I requested an SMS group.

Adwyer

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

Betty-Oops

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.”

Celise65

Thanks so much for all the informative links you have been a great help!

Celise65

I will definately consider accupucture, when you think about how it relates to the different pressure points in relieving pain, it makes sense.

Thanks!

Betty-Oops

Sorry about the missing link! ;-)

SPS-CER, Stiff Person Syndrome with cerebellar disease:

http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=DetailsSearch&term=S PS-CER,+Stiff+Person+Syndrome+with+cerebellar+disease&log$=activity

Oops! ;-)

Betty-Oops

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. ;-)

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