Compression Neuropathy I think A Personal Story

Today's post from ehlersdanloscontemplations.wordpress.com (see link below), is another personal story of life with one of the many forms of neuropathy. Experience has shown that readers like reading about other people's stories in this regard, so long as it's not too often and not a continuous pity-party. This article highlights the fear many people experience when they start to feel 'mysterious' neuropathic symptoms that can't easily be diagnosed. It goes on to reinforce the importance of having doctors that can not only diagnose and treat their patients but support them too. The old 'bedside manner' makes such a difference when the situation seems a little overwhelming.

Numbness, Compression Neuropathy, and Storytime
November 22, 2015 by Stephanie McManus

So, I want to tell you about the onset of a new problem I was dealing with this year. It was eventually diagnosed as compression neuropathy (in my hips). Basically, my ligaments in their looseness cause some sort of problem in my hips and impinge nerves from the base of the spine. I now lose feeling in my upper legs and up into the… bum, when I walk ‘long distances’ and then sit in a normal upright position.

The only relief I’ve found to prevent it from happening is to minimally, sit ‘normally,’ and to spend more time slightly reclined or standing or laying down. Not cool. Whenever I think, “no, I’m sure it’s fine and I’m going to vacuum and then cook and then walk the dog…” it comes back, and despite knowing what it is, I’ll admit, it disturbs me.

My neurologist at UW explained the compression, diagnosed a little vaguely as compression neuropathy, is caused by the hypermobility in my hips and repeated stretching of the ligaments followed possibly by responding muscle spasms. She did research on case studies with EDS patients with these symptoms prior to even seeing me, and she was able to narrow down the diagnosis. What?! It’s what we all hope for in a doctor, that they’ll do their ‘due diligence.’ I almost cried when she came in and knew what Ehlers-Danlos was and familiarized herself with the secondary complications we can develop. You’ll understand the tears of hope?… joy?…if you’ve been diagnosed. 

Anyway, I don’t notice a lot of this going on in my hips, because it’s normal for me and muscle spasms elsewhere feel more troublesome day-to-day. Plus, as I’m sure you’ll understand I start to tune-out sensations that interfere with ‘living life.’ You learn to survive this, and more than surviving, you eventually learn to live more often than survive. Or, always strive for it… every situation is different.

This troublesome, embarrassing, and potentially serious problem started in May of this year. I ignored it! (Don’t do that… ). In June, very ironically after a visit to the first doctor I could find after we needed to move to Washington for my husband’s job, I ended up in the ER. :sigh: My doctor was a whopping 2 hour situation to get to. I drove to Bremerton from our rental in Gig Harbor, rode on a ferry for 45 minutes, sat upright in a chair for an hour waiting for said appointment at a coffee shop, then walked a mile to the doctor’s office to then repeat this going back home.

On the ferry, of all places!, that’s when my legs up the inner thighs all the way into my lower back, and in-between, went completely numb. No feeling at all.

I called my doctor who told me to go straight to the ER. My husband was riding back on the ferry with me from his work in Seattle watching as I laid there unable to 1. panic, because there was nowhere to go or 2. talk, because I was shocked thinking it was the onset of something called cauda equina, an emergency that requires spinal surgery and can happen in EDS.

After many hours at the ER and imaging and a slightly freaked out looking doctor (that’s never a good sign), I was told they didn’t see evidence of cauda equina at this time, and I’m immensely grateful. That’s that, and you know the rest.

So, the point of my story is to illustrate you’re not alone in dealing with ‘mysterious symptoms,’ that eventually, hopefully, are figured out. Some things I deal with remain a mystery, and I’m okay with that right now, because I will keep pushing for a good team on my side when I can in-between living. We fight too hard for good care. But, it’s also important to keep fighting for good care. I got unbelievably lucky being pushed into an appointment with the top neurology clinic in the country. Lucky isn’t my normal, but look, it does happen!

A sad fact, I started experiencing this problem over a year and a half ago off and on. I’d previously been admitted to an ER in Oregon with the same symptoms. This is how I knew about the possibility of cauda equina. But, then, I had been summarily dismissed after the physician couldn’t see the problem on imaging, as if that doctor’s job was confined to diagnosis by MRI lacking any clinical insight. Well.

I’m happy I have such an intelligent and discerning doctor now. I know it will still be difficult because of the lack of awareness about EDS. I’ve continued to experience weakness in my legs and numbness, but I was told to expect it. The difference is I now have a plan and have been told when this could be a more serious problem, and how it will be handled.

Knowing you are cared for and looked over makes all the difference in the world. Right?

https://ehlersdanloscontemplations.wordpress.com/2015/11/22/numbness-compression-neuropathy-and-storytime/

WOMEN WITH Y CHROMOSOME DONT THINK LIKE MEN

Women born with a rare condition that gives them a Y chromosome don't only look like women physically, they also have the same brain responses to visual sexual stimuli, a new study shows.

The journal Hormones and Behavior published the results of the first brain imaging study of women with complete androgen insensitivity, or CAIS, led by psychologists at Emory.

"Our findings clearly rule out a direct effect of the Y chromosome in producing masculine patterns of response," says Kim Wallen, an Emory professor of psychology and behavioral neuroendocrinology. "It's further evidence that we need to revamp our thinking about what we mean by 'man' and 'woman.'"

Wallen conducted the research with Stephan Hamann, Emory professor of psychology, and graduate students in their labs. Researchers from Pennsylvania State University and Indiana University also contributed to the study.

The Y chromosome was identified as the sex-determining chromosome in 1905. Females normally have an XX chromosome pair and males have an XY chromosome pair.

By the 1920s, biochemists also began intensively studying androgens and estrogens, chemical substances commonly referred to as "sex hormones." During pregnancy, the presence of a Y chromosome leads the fetus to produce testes. The testes then secrete androgens that stimulate the formation of a penis, scrotum and other male characteristics.

Women with CAIS are born with an XY chromosome pair. Because of the Y chromosome, the women have testes that remain hidden within their groins but they lack neural receptors for androgens so they cannot respond to the androgens that their testes produce. They can, however, respond to the estrogens that their testes produce so they develop physically as women and undergo a feminizing puberty. Since they do not have ovaries or a uterus and do not menstruate they cannot have children.

"Women with CAIS have androgen floating around in their brains but no receptors for it to connect to," Wallen says. "Essentially, they have this default female pattern and it's as though they were never exposed to androgen at all."

Wallen and Hamann are focused on teasing out neural differences between men and women. In a 2004 study, they used functional magnetic resonance imaging (fMRI) to study the neural activity of typical men and typical women while they were viewing photos of people engaged in sexual activity.

The patterns were distinctively clear, Hamann says. "Men showed a lot more activity than women in two areas of the brain -- the amygdala, which is involved in emotion and motivation, and the hypothalamus which is involved in regulations of hormones and possibly sexual behavior."

For the most recent study, the researchers repeated the experiment while also including 13 women with CAIS in addition to women without CAIS and men.

"We didn't find any difference between the neural responses of women with CAIS and typical women, although they were both very different from those of the men in the study," Hamann says. "This result supports the theory that androgen is the key to a masculine response. And it further confirms that women with CAIS are typical women psychologically, as well as their physical phenotype, despite having a Y chromosome."

A limitation of the study is that it did not measure environmental effects on women with CAIS. "These women look the same as other women," Wallen explains. "They're reared as girls and they're treated as girls, so their whole developmental experience is feminized. We can't rule out that experience as a factor in their brain responses."

The findings may have broader applications in cognition and health. "Anything that we can learn about sex differences in the brain," Wallen says, "may help answer important questions such as why autism is more common in males and depression more common in females."

RESTROOMS NOT AS UNHEALTHY AS YOU MIGHT THINK

Microbial succession in a sterilized restroom begins with bacteria from the gut and the vagina, and is followed shortly by microbes from the skin. Restrooms are dominated by a stable community structure of skin and outdoor associated bacteria, with few pathogenic bacteria making them similar to other built environments such as your home.

The research is published ahead of print in Applied and Environmental Microbiology.

In the study, the investigators characterized the structure, function, and abundance of the microbial community, on floors, toilet seats, and soap dispensers, following decontamination of each surface. They analyzed the surfaces hourly at first, and then daily, for up to eight weeks. "We hypothesized that while enteric bacteria would be dispersed rapidly due to toilet flushing, they would not survive long, as most are not good competitors in cold, dry, oxygen-rich environments," says corresponding author Jack A. Gilbert of San Diego State University. "As such, we expected the skin microbes to take over--which is exactly what we found."

"Reproduceable successional ecology is remarkable," says Gilbert, who has conducted similar studies of the home, and the hospital. "Most systems have the potential to have multiple outcomes. The restroom surfaces, though, were remarkably stable, always ending up at the same endpoint."

Indeed, the communities associated with each surface became more similar in species and abundance within five hours following initial sterilization, and the resulting late-successional surface community structure remained stable for the remainder of the 8 weeks' sampling. Floor communities showed a rapid reduction in abundance of Firmicutes and Bacteroidetes, while the relative abundance of Proteobacteria, Cyanobacteria, and Actinobacteria declined over the course of a day. Cyanobacteria are likely derived from dietary plant biomass or from plant material tracked in from outdoors.

Toilet seat samples, alone, clustered according to restroom gender, with Lactobacillus and Anaerococcus--vaginal flora--dominating ladies' room toilet seats, while the gut-associated Roseburia and Blautia, were more copious on toilet seats in men's rooms.

Ultimately, skin and outdoor-associated taxa comprised 68-98 percent of cultured communities, with fecal taxa representing just 0-15 percent of these. And out-door-associated taxa predominated in restrooms prior to sterilization, as well as in long-term post-sterilization communities, suggesting that over the long term, human-associated bacteria need to be dispersed in restrooms in order to be maintained there.

Overall, the research suggests that the restroom is no more healthy or unhealthy than your home, says Gilbert."A key criterion of of healthy or unhealthy might be the presence or relative abundance of pathogens. While we found cassettes associated with methicillin-resistant Staphylococcus aureus (MRSA) the predominant Staph organisms didn't harbor those genes, so MRSA may be there but it is very rare." Restrooms, he says, are not necessarily unhealthy, but classifying them as healthy would not necessarily be accurate.

The research, he says, is very important for understanding the environmental ecology of the built environment, and will likely help in building restrooms and buildings generally that are healthier for humans.