The Incredible Shrinking Brain

Like Alzheimer’s, Multiple Sclerosis is a neurodegenerative disease.

Neurodegeneration is the progressive loss of structure or function of neurons, including death of neurons. Many neurodegenerative diseases – including amyotrophic lateral sclerosis, Parkinson’s disease, Alzheimer’s disease, and Huntington’s disease – occur as a result of neurodegenerative processes. Such diseases are incurable, resulting in progressive degeneration and/or death of neuron cells.  As research progresses, many similarities appear that relate these diseases to one another on a sub-cellular level.

First, everyone needs to know that starting at the age of 40, your brain will shrink about 5% every 10 years. This is a normal part of the aging process, just like wrinkles in you skin, gray in your hair our brains show signs of aging. Once a person reaches the age of 60 the atrophy becomes a little quicker.

People with neurodegenerative diseases will experience more atrophy at a faster rate. Atrophy of the brain happens with neuron cell death, and the connections between those neurons.

High Dose Biotin (300mg) has been shown in several studies to help slow down atrophy in MS brains. This B vitamin is considered safe to take at high doses because your body does not store this and just gets rid of any extra. The recommended daily dose is 30mcg for normal, healthy people. It is thought that high dose biotin can help repair the damaged myelin around the damaged neurons. Studies are happening around the world for Primary Progressive and Secondary Progressive Multiple Sclerosis and how high dose biotin can possibly slow the progression of the disease and assist with pain, energy, vision and partial paralysis.

In Alzheimer’s patients, low hippocampal volume is the marker before any other symptoms show. In MS patients the atrophy does not stick to one particular area of the brain. Since brain atrophy causes diminished communication between neurons, and myelin break down does the same it’s not really surprising that atrophy is increased in those with MS and causes more disability progression.

A paper published this year regarding a study of healthy individuals and MS patients looked at the lateral ventricular volume and white matter volume in similar age groups. The study showed that in people with MS showed that of the groups, 30-69 year old patients had increased lateral ventricular volume compared to “healthy” people. In addition, MS patients showed decrease in white matter volume for groups between the ages of 20-59 years of age.

Excitingly, there is software now that can automatically takes these measurements during the annual MRIs most of us MS patients get. At my local MS Center they use NeuroQuant software and the report is automatically saved on the disc with images when I leave with it the same day. NeuroSTREAM is just one of the other options, there are a couple others and with new technology advances I am excited to see what comes next.

I personally, have the last 4 years of my measurement reports and I keep them in my bullet journal I use to track symptoms, activities, and daily health stats like temp, blood pressure and others.

Not everyone is going to want to have this information and will just let their healthcare professionals give them the information they feel is valid, and that is completely okay. Personally, I love the information, I like having it ready and it gives me time to process the information and form educational questions that I feel are valid.

 

 

Need to Know: High-dose Biotin Protocol

High-Dose Biotin May Be an Effective Treatment for Progressive MS

https://www.mstrust.org.uk/a-z/md1003-biotin

https://www.mstrust.org.uk/news/news-about-ms/high-dose-biotin-withdrawn-european-licensing

https://www.healthline.com/health/brain-atrophy

https://www.ncbi.nlm.nih.gov/m/pubmed/31074192/

Brain Atrophy in MS Patients May Soon Be More Easily and Routinely Examined

 

Checking In

I realized a couple of days ago that I am in kind of a slump emotionally. This year has been a whirlwind of one thing after another and most of it has been stressful.

I haven’t felt like blogging, reading, genealogy or anything. Today I had therapy and was discussing how I’m just not feeling it. My mind of course goes first to my anxiety meds, changed over a month ago, do they need to be adjusted?

We discussed all the things that have been happening, my switch to keto which is going fairly well. I mentioned Oak (service dog) had a vet check last week and his public access test yesterday. I went to my second graders class too to discuss Service dogs, the different jobs they do and what you can and should not ask/do.

When she asked me how I felt about all those positive things I had no answer… Fine I guess.

Then I told her about the upcoming MRI on Thursday, the annual check of lesions and atrophy of my brain. I love MRIs, I love looking at the disc of images, how else would you ever get to see your brain?!

With her help I discovered the anxiety that comes with this imaging. Being denied my medication for so long before finally starting a new med that I had a lot of side effects from. There is so much pending this test that consciously I wasn’t noticing.

Did the delay cause more lesions? Did the high dose biotin help reduce the atrophy? When in the previous year there was a huge percentage of atrophy compared to “normal” MS patients.

So while I’m not scared to get in the tube for 45 minutes and I enjoy having information, I am very worried about what the information will be.

 

When Your Appearance Matters to Your Child

My typical outfit for the last 11 years has been jeans, a t-shirt and something to cover my head due to alopecia, typically a bandanna of sorts or something like what cancer patients wear when they do chemo. I shave my head so that the significant loss of hair due to alopecia doesn’t break me every time I look in the mirror.

When I drop off my kids and pick them up I am in my usual attire, that’s what I am comfortable in, when you work in IT and they let you wear it every day you get used to it. Depending on how I am feeling I may wear a “nicer” top when going to events at the school (parent/teacher conference, back to school night).

I volunteered at my second graders school for one hour this week. It consisted of sitting on a stool next to a filing system where the kids school work goes and then putting those papers in the corresponding folders. Easy enough for my wonky brain and broken body, though I must admit that doing that for an hour, as simple of a task it may be, actually wore me out. I felt more foggy and fatigued than usual but my kid was so excited I was there.

That being said, and knowing that I already draw attention with a service dog, I put on a more business casual top for that day and my son picked out what was going on my head. He did not approve of the plain black scarf I was going to wear tightly around my scalp with a knot that made it look like a bun at the back.

He is keenly aware of appearance at the ripe age of 7. Most recently he likes to check himself out in a full length mirror attached to a cabinet in the living room where we keep the snow gear. He wears light weight jackets around his waist like an accessory, and makes careful selections about his shirt each day. I expect this from my 13 year-old, I wasn’t prepared for it from my 7 year old.

The oldest made a comment the morning I went to volunteer asking  me where I was going because I was more dressed up than usual. While I would like to think people should just accept us how we are, fashion choices and all, I know that is not the world we live in. It saddens me to think that what I may be wearing will have an impact on how classmates treat my son, it doesn’t make sense and yet that is the world we apparently live in.

Until the world changes, I will continue to let my kids advise me on attire when I am attending something with them or at their school because I love them and don’t want their life to be any more complicated than it is having a mom with MS, Meneire’s disease and a service dog.