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.

2 comments:

  1. Oh man, friend! What a trial. I'm sorry. :(

    ReplyDelete
  2. Words are inadequate - sorry you're having to go through this.

    ReplyDelete