Stiff Person Syndrome

[BG]

Has anyone been diagnosed with Stiff Person Syndrome?

The SCM muscle in the right side of my neck has been permanently contracted since May 3, 2008, I have contractures in both of my hands, and now my legs are getting worse making it hard to dress myself, walk, descend stairs, etc. I meet almost all of the diagnostic criteria for Stiff Person Syndrome (an autoimmune related syndrome that can afflict people with SLE, SSc, dermatomyositis, etc.) but I haven’t been diagnosed with it yet and hope to halt progression of it before that happens. I would like to hear from those who have the diagnosis of Stiff Person Syndrome about the treatments that have worked for you, etc.

Barb

[Lynne G.SD]

Hi Barb;
I suspect that this is from the Lyme disease.I see you are only taking Doxy for this and that certainly is not enough.I am on 6 different antibiotics,three at a time and on rotation.Our darling Maz can probably give you a list of good LLMDs as she has it also.Have you used the “search” at the top of the page to look at the posts done by other Lymies?They are really helpfull but pay special attention to those done by Maz.
I was at my vet’s yesterday with a cat that needed help and we started talking.She is of the firm belief that what we know about Lyme is just the tip of the iceberg and is very concerned.
Lynne

[BG]

Hi Lynne,

I suspect it’s due to Lyme disease as well and or other chronic infections. I agree I should be on other antibiotics but I have no way of obtaining them at this time. I have the list of LLMDs already but can’t pay for their services at this time. I’m stuck with conventional medical care for now.

I did a search of past posts already too. Found only one post about Stiff Person Syndrome. Sent a PM to that person but I’m not sure she’ll respond because her last post was in 2009.

Thanks for responding,

Barb

[Maz]

Hi Barb,

Hi hope Snickers60 gets back to you. In the meantime,I ran a search on LymeNet and there are 3 or 4 posts on there with similar dx’s of SMS with positive GAD auto-antibodies. Did you test positive for this or any history of diabetes?

It’s just not a disease that gets talked about here much, so hoping someone is looking in and has some knowledge of this that can chime in. I’m just so sorry to hear you’re having to contend with this concern now and that you’re in so much pain without the resources to pursue this further with a LLMD, as Lynne suggests. SMS is considered idiopathic, but the one type of doc who would at least try some therapeutic probing with different classes of anti-microbials would be a LLMD. “Lyme” is now being dubbed, “MCIDs” now by some very experienced LLMDs who have realized that Lyme is so much more than just borreliosis, but a “mixed chronic infectious disease” syndrome. Lyme may be the initiating trigger and keep immune function suppressed, but it’s a whole plethora of other opportunistic and latent infections that are probably causing persistence and the evolution of this disease “layering” problem….not to mention toxic environmental exposures which also add to poor immune function.

One of the txs you’ve probably already read about for SMS (as I know you’re a voracious researcher) is IVIG, which is horrendously expensive and still considered experimental, but has been having some positive effects for this disease manifestation. Some insurances may cover it with some prodding, as it seems there is really no effective longterm conventional tx for SMS.

Perhaps you could also try connecting with the few who have posted on LymeNet with this dx to see what avenues they’re pursued and what has worked/not worked?

Barb, I’m going to send you some info in a PM that may or may not help, but just thought to pass along re: studies going on at Northwestern Uni as something you could research and see if you could get onto a clinical trial.

[BG]

Hi Maz,

I’m not diagnosed with Stiff Person Syndrome (Stiff Man Syndrome). No one has checked for antibodies to GAD and I’m not diabetic (yet). Diabetes is in my family history, both type 1 and type 2, so I may develop it down the road like my father and several of his siblings did but I don’t have it now.

My body is just stiffening up and gradually contracting more and more. My father’s body has been doing the same thing for years. He’s now permanently contracted in a fetal position. I was simply hoping to head off such an outcome by being proactive — mostly interested in learning if any antibiotic protocols can prevent this or turn it around.

I have had most of the other treatments for SPS already, except for IVIG and stem cell. Benzodiazepines are the only drugs that help me with the contractions but once you start taking them you really can’t stop taking them without suffering serious consequences. I was on low dose Klonopin for years and it helped immensely but I had to stop it because of heart problems (life threatening bradycardia) and, despite tapering the dose gradually over many weeks, I suffered serious physical problems. It may be what caused the permanent SCM contracture in my neck.

I no longer have health insurance or income so IVIG is out of the question. I have had to apply for disability but, because I have been misdiagnosed for so many years, that process has been very protracted and complicated.

Barb

[BG]

Maz,

I found the clinical trial you mentioned. So promising!

Unfortunately anyone with infections (acute or chronic) is ineligible to participate. I have chronic viral, fungal and bacterial infections 🙁 I will keep checking for future clinical trials though and will try to make contact with the doctor involved in the studies.

Thanks again,
Barb

[Maz]

@BG wrote:

Unfortunately anyone with infections (acute or chronic) is ineligible to participate. I have chronic viral, fungal and bacterial infections 🙁 I will keep checking for future clinical trials though and will try to make contact with the doctor involved in the studies.

Hi BG,

Have PM’d you with a bit more info on this. Sorry I mixed up the SPS and SMS! I had been reading the LymeNet posts and someone called it that and it must have stuck in my silly head. 😆

[BG]

Maz,

Stiff Person Syndrome used to be called Stiff Man Syndrome so you weren’t wrong in using that identifier.

I just discovered cats in Scotland and elsewhere have been coming down with what could be called “Stiff Cat Syndrome” See the video accessed via the link in the article found at http://www.world-science.net/othernews/120412_robotcat.htm for more info. My symptoms and the cat’s symptoms are nearly identical 🙁

I had to get my paperwork together because I have to see new doctors. The only thing that has showed up in my tests, other than the CD57 test, is Anaplasmosis (aka HGA) which is transmitted by ticks as well as biting flies and probably other insect vectors. Chronic untreated anaplasmosis can deplete the immune system which can result in other opportunistic viral and fungal infections overwhelming the body as well …

Barb

[BG]

Here’s a link to a scientific article regarding what I call Stiff Cat Disease http://jfm.sagepub.com/content/14/4/250.full

Rickettsial infections are mentioned, as are several viruses.

[Author]

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