How am I doing?

Many people have been asking me for a number of weeks now how I'm doing. That is a very difficult question to answer as it depends on the day, time of day, or even the week. It's difficult to tell people how I'm doing mostly because Multiple Sclerosis (MS) has a lot of different symptoms - which can vary in degree and intensity. The type of MS I was diagnosed with is called Relapsing-Remitting MS. Some people may be fairly symptom free for years - or the symptoms can go into a period of relapse (aka: come on in force). Even with the possibility of MS remitting (or a cycle of retreating), there can be severe chronic symptoms which never go away.

Not listed in any particular order, some of my ongoing symptoms are these...

• fatigue
• walking/balance difficulties
• numbness or tingling in hands and feet
• muscle stiffness and cramping (or spasms)
• muscle weakness
• dizziness
• back pain / neck pain
• clinical depression (like I needed any help with that)
• mood swings and irritability
• tremors (uncontrollable shaking)
• blurry vision
• insomnia
• heart palpitations
• and cognitive changes 

There are a few other symptoms that I have, all of which can come and go in degree or intensity - but this gives you an idea of what I'm living with pretty much every day. For more information on MS symptoms, this is a great website: http://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms

There are also things in everyday life which can trigger episodes of relapse. The biggest triggers which exacerbate symptoms for me are... not getting enough sleep, stress, physical over exertion, and heat intolerance. With temperatures consistently being around 100 every day this summer, that is why I've been staying indoors. Pretty much that, though necessary, has been like putting myself into isolation (which does not help with depression). Sadly an activity which I really enjoyed in the past, that of walking around the neighborhood, has become out of reach or severely liminted for me. It's not just the hot temperatures, but also a combination of many other factors listed above.

So what about medication?

Surely there's something the doctors are doing to help, right? Well the medication I am taking - which I administer to myself is a three times a week subcutaneous injection (meaning in the non-muscle fatty areas of the body). The purpose of that is to help lessen or prevent future relapses, and it can also theoretically help to slow the progression of this disease. However it does nothing for current symptoms. For those I do other things - among many are to take muscle relaxant pills three times a day, and the end of June I had three days of a IV steroid infusion.

Other questions?

Other question people ask mostly deal with them not understanding what MS is, or what it does to the body. Completely understandable, it is not something one encounters a lot - and until I was given this diagnosis I too did not know much of anything about MS.

There is a great presentation which goes over that on this website: http://www.webmd.com/multiple-sclerosis/ss/slideshow-multiple-sclerosis-overview. In case you don't have time to pan through all 21 slides in that presentation - here's a brief overview which I copied and pasted just a few snippets here for you...

What is Multiple Sclerosis (MS)?

MS is a chronic disease that damages the nerves in the spinal cord and brain, as well as the optic nerves. Sclerosis means scarring, and people with MS develop multiple areas of scar tissue in response to the nerve damage. Depending on where the damage occurs, symptoms may include problems with muscle control, balance, vision, or speech.

How MS Attacks

In people with MS, the body's own immune system attacks the tissue surrounding the nerve fibers in the brain, spinal cord, and optic nerves. This covering is made of a fatty substance called myelin. It insulates the nerves and helps them send electrical signals that control movement, speech, and other functions. When myelin is destroyed, scar tissue forms, and nerve messages are not transmitted properly.

MS Symptoms: Weakness or Numbness

Nerve damage can cause:
Weakness in an arm or leg
Numbness
Loss of balance
Muscle spasms
These symptoms may lead to frequent tripping or difficulty walking.

Other MS Symptoms

MS can take a toll on mental sharpness. Some people may find it takes longer to solve problems. Others may have mild memory loss or trouble concentrating. Most people with MS also experience some loss of bladder control, because signals between the brain and bladder are interrupted. Finally, fatigue is a common problem. You may feel tired even after a good night's sleep.

MS and Weather

Research suggests that the disease may be more active during the summer months. Heat and high humidity may also temporarily worsen symptoms. Very cold temperatures and sudden changes in temperature may aggravate symptoms, as well.

Treating MS: Medications

While there is no cure for MS, there are "disease-modifying drugs" that can reduce the frequency and severity of MS attacks. Use can result in less damage to the brain and spinal cord over time, slowing the progression of disability. When an attack does occur, high-dose corticosteroids can help cut it short. Many drugs are also available to manage troubling MS symptoms, such as muscle spasms, incontinence, and pain.

Treating MS: Pain Management

About half of people with MS develop some form of pain, either as a result of a short circuit in the nervous system or because of muscle spasms or strain. Doctors may prescribe antidepressants and anticonvulsant medications to ease nerve pain. Pain medicines and anti-spasm drugs may also be used. Muscle pain often responds well to massage and physical therapy. Be sure to discuss the options with your doctor if you find yourself in pain.

Behind the curtain

In the movie The Wizard of Oz there is the phrase at one point when the wizard says: “Pay no attention to the man behind the curtain”. Well this week the curtain was fully drawn open, but there was no man there - only a medical diagnosis which I am still trying to process. What is this diagnosis you ask? Okay, I won’t make you read any further to discover what is behind that curtain.
I have Multiple Sclerosis (MS).

After having a brain MRI done last Friday afternoon (and joking with everyone that they wouldn’t find a brain in there), I figured I wouldn’t hear from my doctor until at least Monday this week. Last weekend was difficult to get through, wondering and not knowing. After waiting all day with no news - late Monday afternoon I finally logged into my insurance’s public portal and quickly found the radiologist’s report. Reading that while sitting at my desk at work - alone - I just started crying. Wasn’t the way I would have liked to find out, but then don’t think there would have been a “good way” to do so.

I really wanted an answer for the previous months of increasing dizziness (this time, unlike in the past, it just was not going away). Already tests last month showed it was not related to my inner ear and I so much wanted them to find something - anything to explain the why - even if it was bad news. Well, it was just that… bad. ugly. news.

Spent Monday evening searching the internet for information about MS. While it is a great tool, which can provide so much with a simple search - the internet can also be very scary when you are reading about a medical condition that you've just found out you have, and for which there is no cure.

The next morning my doctor’s office finally called, but thanks to my curiosity I already knew. Was told he wanted me to make an appointment with a Neurologist, which I did. But the earliest appointment with her is 3+ months from now (hopefully that can be moved up, I am on a waiting list, and my doctor said he would help). Then thankfully I was able to meet with my doctor that very afternoon where he asked me so many questions. Things like - have you ever experienced this symptom; when was that; how long did the symptom last; did it ever return, if so when. Then on to the next symptom, and the next, and the next with the same line of questions. He warned me that when I saw the Neuro doctor, she would ask way more questions and in greater detail. Then he gave me a confirmed medical diagnosis that yes, I do have MS.

One good thing is that now I have a permanent handicap parking permit on the license plates for my car. There are some days when it is just so difficult to get from car to building and back again. Have become an expert at driving the motorized shopping carts at the grocery store. Well, at least I haven’t run over anyone… yet (but beware and watch your feet if we are in the store at the same time!!).

Next up this coming week is a spinal tap and yet another MRI. These are tests to help better pinpoint what type of MS it is (there’s like four different types). This time it will take three hours in the noisy MRI machine to scan my entire spinal column. Now I’m making jokes that they may have found a brain with the previous scan, but this time will discover I’m spineless. You see, it’s the jokes which keep me from going insane with all of this. So if you hear me joking and think that I must be doing really well handling this - just don’t look behind the curtain because odds are you’ll see a woman there, maybe curled up in a fetal position, crying and trying to find her way through this.

The hardest thing this past six or so months is probably not what many people may think - which would be recovering from a fractured ankle in mid-December. No, the most difficult for me has been having to ask for and rely on help from other people. That is something which does not come easy for me. I’m stubborn, and yes there’s one of the seven deadly sins of pride thrown in there too. Now there’s also a modicum of anger found in the mix of stubborn pride (sorry about that, hope the anger won’t stick around very long). Please be patient as I navigate this unknown path set before me and come to terms with my new reality.

Know there are many people who have MS and are leading very productive lives. There are also others reading this blog post who know someone, or heard of someone with MS - and will have a multitude of suggestions or recommendations of what I should do. While it is interesting to hear about different treatments - please do not take it personally if  (while grateful for the efforts to help) - if I am not as receptive as you might want me to be. Everyone is different - MS symptoms and treatments are not the same from one person to the other - and I am not making any decisions about treatments (western medicine, alternative, or a combination of both) until after the testing is completed. And after I meet with the Neurologist to find out which of the four types of MS it is that I have.

At least now I know the why behind my ever present and increasing dizziness and stumbling around; having to use a cane for balance and try to not look like the "drunk lady in the neighborhood" (which is weird because I've never drank alcohol). But it’s not just the dizziness - it is a lot of other symptoms too. MS is one of those autoimmune diseases that are often referred to as being an “invisible disease”. But I should be used to that by now, because depression is also in that same category of being invisible.

Answering my doctor’s questions, and thinking about the answers made me realize that I have had many of these issues for about 6-10 years now. My coping techniques were no longer working - and thanks to the prodding (aka: shove) from a dear friend to go see my doctor - I finally was put on the path which has brought me to this point. While I’ve joked with her that it is "all her fault" that now I know about having MS - I really am grateful for her loving push. And I’m also thankful for those who have looked past my stubbornness and pride to give much needed help, especially these past few months.

What’s next? Your guess is as good as mine. For now the MS roulette wheel is spinning and no one knows just what the results will be.