Possible Stiff Person Sydrome

All, can you share what the symptoms were that led to your final case being a SPS diagnosis? Curious as to how it started for this group....My 31 yr old friend is just now seeing symptoms of SPS and it's ruining her livelyhood from social to work. Once dancing and vibrant, now unable to move other than bathroom and light things. And the pain, also history of seizures.

@flyhaviland
Hi,
I am sorry to hear your friend is having health struggles. Everyone presents a bit differently so it is not always apples to apples. I suggest reading information regarding SPS symptoms on NORD, the Mayo Clinic, and The Stiff Person Syndrome Research Foundation. Diagnosis will include eliminating many other autoimmune/neurological conditions first. The antibody tests are not always positive. If positive they do not always indicate SPS as well. I would suggest your friend reviews the doctors on the medical advisory board for the SPSRF and see if he/she lives nearby any of the experts. Or perhaps he/she can ask the local neurologist to reach out to one of those doctors for an opinion. I hope this was helpful.

@flyhaviland I am sorry to hear that your friend is experiencing such symptoms. I thought I would share my experience in case any of it could be of some food for thought.

I have not yet, and may never be officially diagnosed with a neurological condition but have experienced episodes of leg paralysis and later on experienced nearly two years of severe muscle stiffness that made walking, (and then arm movement) extremely difficult (I used a wheelchair out of the home).

To try and make a long story short, my symptoms are, at least in part, related to celiac disease. I spent years seeing specialists of all kinds but it took twelve years of sporadic symptoms to be tested. As it turns out, in my research (and am currently working with a motor disorder specialist in neurology), Stiff Person Syndrome is something that has come up because many people who have Stiff Person Syndrome also have gluten intolerance and or celiac disease. Some people with Stiff Person Syndrome find total symptom relief from going gluten free! (This was not the case with me-- by the time I was diagnosed the leg stiffness was only getting worse.

Celiac is an autoimmune disease that primarily causes the destruction of the villi in the small intestine, which prohibits nutrient absorption in those areas of the intestine, predominantly the duodenum. Other areas of the small intestine can sometimes "make up for it" and make it appear in blood work that nutrient absorption is fine; I have severe celiac but my vitamin levels were not ever poor, in part because I was taking vitamins! But celiac not only destroys the small intestine. It has the ability to cause the attack any tissue in the body-- brain, heart, skin, you name it. Some are more common, others less but, there are actually over 200 symptoms of celiac. The only treatment for celiac is lifelong commitment to eating gluten free, without cross contact of gluten, which can be tricky. Some people have gluten intolerance which may manifest in many ways but does not cause the destruction of the small intestine.

Something very important: in order to test accurately for gluten sensitivity and celiac, you need to be eating gluten! (Eat the equivalent of a slice of bread everyday for three months.) For a person with Celiac, if you go gluten free for a time and then try to reintroduce gluten you will likely become violently sick with GI symptoms and/or worse, making testing at that point nearly impossible unless you want to spend months in the bathroom. If I so much as eat a crumb of gluten now I am in the bathroom for a week and my legs hurt. Needless to say, I now have to be extremely careful-- but before my diagnosis, I had no GI symptoms! This is why many patients with celiac go undiagnosed.

Testing starts with a simple blood test ordered by PCP, and if any of those levels are off, the next step is referral to GI and an endoscopy and biopsy of the small intestine to confirm villus blunting.

Here is the celiac serology to ask for:

1. IgA antibody
2. Antigliadin Antibody IgG
3. Antigliadin Antibody IgA
4. Tissue Transglutaminase Antibody
5. Immunoglobulin A level

As I mentioned, I experienced debilitating leg stiffness that lasted for almost two years. It is by the grace of God that I ever came across this, but by going on a low-glutamate diet I am now feeling better that I ever have and can run and Irish dance and take care of my kiddos. (I am, for reference, now a 44 year old mama of two... My husband and kiddos have seen me through a lot. I just got my legs back a year and a half ago.)

Glutamate is an amino acid, found in all food but in some foods more than others. It is a very healthy thing to consume, for most people, and it is often recommended to take as a supplement to aid in healing of the intestine. However, some people are sensitive to it. Glutamate is also a neurotransmitter, and the most abundant neurotransmitter in the brain. People with neurodegenerative disease, regardless of the type-- including epilepsy all have an over abundance of this neurotransmitter in their brain. This over abundance causes over-firing and excitotoxicity, and can contribute to symptoms. When I read an article written by Dr. Vikki Peterson relating the neurological effects of celiac disease to not only gluten but high glutamate consumption, I knew I had to try a low glutamate diet.

I first tested myself with Parmesan cheese, which has the highest amount of glutamte of any naturally occurring food. I ate a half a block and within 45 minutes my legs seized up to the point that my husband had move them for me. After this, I began eliminating all highest glutamate offenders, which are often foods high in protein and strong flavors: canned fishes, cheeses, yogurt (really, all and dairy, particularly strong cheeses but some people tolerate mozzarella etc), foods made with soy sauces or flavor enhancers like MSG, hydrolyzed yeast extract, etc, fermented veggies, heavily spiced foods, broths, peas or pea proteins, spinach, peanuts and nut butters, nightshade veggies, tomato sauces and other foods cooked for long periods of time, or even fruits and veggies that have sat out for long periods of time. (The more a food breaks down, the more glutamate is released.) I had been eating sardines, yogurts, bone broth in abundance-- all the "right foods" to heal my gut-- and they were killing me.

Within two weeks of eliminating these foods, I was able to RUN!

The idea for me is to lower glutamte intake, specifically free-glutamate intake which is the specific type of glutamate that digests super quickly and is often the highest offender for someone who is sensitive. I eat very, very clean; nothing processed aside from sunflower seed butter and am finding new ways to be creative with my diet. I eat lots of sweet potatoes, eggs and chicken, veggies, quinoa, olive oil, pears, apples, wild blueberries, buckwheat, and I have found that I can tolerate spinach but not peas (my legs begin to ache with peas). It can be socially challenging because I have to bring my food with me wherever I go... But I am grateful to live.

So, I am not sure if any of this could be of value to you, but I will say that regardless of what your friend is up against I think it is super important to see all the doctors you can... Find out all that you can... Do not give up and do not underestimate the value and importance of nutrition and learning about your body's unique nutritional needs, regardless of what you are diagnosed with.

Again, I am so sorry to hear of what your friend is going through and I hope she finds symptom relief and answers very soon!

cmmichaela, thank you for this careful, thoughtful answer. I'm certain is will help more than one person.