Archive for neurology

Let’s Talk MS

Posted in advocacy, medical, personal with tags , , , , , , , , , , , , , , on January 11, 2016 by shealm

A lot of people have misconceptions about MS (multiple sclerosis). I had one person mistake MS for ALS (both are demylenation diseases, one is a lot nastier – ALS).

First let’s start with what multiple sclerosis means as a medical term:

We all know what multiple means (as in many, more than 1). Sclerosis means scar tissue. Scaring, which means MS means multiple scars.

What causes these scars? The immune system, it mistakes the myelin sheathing on the nerves (that fatty coating that makes it possible to send signals back and forth from brain down the spinal cord to body and back) as a foreign body. It attacks that fatty coating and destroys and scars it.

There are several types of MS:

RRMS – relapsing/remitting : meaning it causes flares of worsening symptoms or new ones then will remit or go into remission.

SPMS – RRMS will usually progress down the line to this particular type of MS. Secondary progressive MS. Meaning the symptoms (new or old) to not remit or go into remission. They just kind of keep piling on or get worse.

PPMS – Primary progressive. Same as above but it is rare to start with this type of MS. There are a small percentage of MS patients who get the PPMS diagnosis right out the gate.

PRMS – Progressive but can go into remission.

There is also something called benign MS (a lesion on the brain is benign? I find this category categorically stupid, most MS patients do). Apparently it supposedly has no effect on people.

Most people also know about CIS (clinically isolated symptoms). CIS is usually the first thing a doctor will say on the first presentation of a flare or symptoms. You have to have 2 flares or more within a set period of time to be diagnosed with MS.

The next category is debatable (my opinion, it’s a whole different demylenation disease that can mimic MS or MS can mimic it).

Devic’s Disease. There are a few very distinct differences with Devic’s that must be present: Spinal lesions, Iron deficiency and optic neuritis to name a few. (Devic’s is also referred to as neuromylitis optica and is from a spectrum called NWO spectrum disorder which includes everything from transverse mylitis, spinal stenosis, etc).

Okay now that we have simplistic definitions out of the way:

Symptoms. Lots of them. Some people will get some symptoms others do not. Some will need a wheelchair, walking cane or walker – some will not.

MS is called a “snowflake” disease because no two MS patients are alike. Fun stuff huh?

Some of the more common symptoms are burning, itching, tingling, numbness of skin/limbs/body. Balance problems, speech problems (slurring of words, loss of words, word replacement), vision problems, spastic muscles (which causes pain), cognitive function deficits, short term memory problems, bladder/bowel problems…list goes on.

What does it look like on an MRI you ask? Because you just did your MRI and have the disc and want to compare notes and get a better understanding of what you are looking at:


Let’s compare notes shall we?


This is a top view of three brains: It is the view of the periventricles (the middle of the brain with the darker sections where CSF or cerebro spinal fluid circulates through the brain. It is affectionately referred to as the brain bath (the fluid that bathes our nerves, spinal cord and brain and keeps it healthy, we need that stuff).

Notice the difference in the two MS brains compared to the healthy control? The periventricles are larger suggestive of brain matter loss. This means more CSF is circulating in the brain than that of a healthy control because of the lack of brain matter.


That’s a real side view of a brain up there (mix is left and right). Actually, that’s my proof I have a brain and am blonde (yes you can laugh at the ill mannered joke I just made about myself). Those are from the SAG T2 Flair longTR shots of my head (Flair makes it easier to see the lesions better). That’s not all of them from the survey. The brighter spots are lesions, not as big as some of my fellow MS patients but size doesn’t matter  (in my opinion, at least to an extent) with MS, where they are matters.

So to recap:







That curved bright white spot up there, a lesion. The Healthy Brain picture, obviously not mine (thanks google images, even if you google people did break my phone – broken clock is right twice a day too).

So that’s the quick run down (if you call almost 1000 word post a quickie). Got questions? I got a comment box you can use.



Multiple Sclerosis

Posted in personal with tags , , , , , , , , on October 2, 2015 by shealm


Today was a day of vindication. I’m also very highly irate. I did an MRI last June for an aneurysm screening and MS screening. The report wasn’t read until today and it took my doctor’s temporary replacement to do it.

Spots on the white brain matter indicative of MS seen. No aneurisms detected.

Two sentences. One a relief the other …well I haven’t cried yet but I will.

Over a year without treatment because a doctor didn’t believe me and didn’t bother to read a report.

I had a verbal diagnosis of MS since 2005. Verbal. Wth is a verbal diagnosis going to do right. A decade of fighting with doctors to take me seriously, to stop telling me its mental health issues, to stop saying I’m too young.

I am utterly raging mad that I’ve missed a full year of treatment because of this lack of caring. What’s Hippocratic Oath if doctors are going to ignore their patients they made that oath to?

The temporary doctor, she is amazing! She was mad too. She has rushed an MS protocol MRI and neurologist referral on my behalf. I like her, knowledgeable, patient and good at what she does. Smart as all hell too, sharper than a tack.

Too bad she is only temporary. She would serve our community way better than most of the doctors here.

Vindicated but hurting because I feel I didn’t matter much to someone it should have mattered to.