Demyelinated not Destroyed

What is strength?  What is weakness?  I’ve been having to ask myself these questions a lot lately.  Having a disease like CIDP can often challenge long held views and definitions of even the most innocent of words.

For the past week, I’ve been dealing with legs that have decided being weak and unsteady is the way to go.  The balance that I regained after my first dose of IVIg is now gone.  The toes on my right foot are injured from repeatedly stubbing them on the single step that leads up from my family room to my living room.  I’m trying to get up and move around in spite of my weakness and lack of coordination but I feel like I’m walking this tight rope between doing just enough to keep muscle atrophy at bay and overdoing it.  I know if I overdo it that my weakness will just get worse and I definitely don’t want that to happen.

All the while, this weakness in my legs has me thinking about what my future with CIDP could look like.  I don’t like thinking that I might wind up needing a cane or be in a wheelchair at some point in my life.  The cold, hard facts are that I’m 30 years old and I’ve just barely begun my journey with this disease.  I have three beautiful, wonderful children.  I want to dance at each of their weddings. Will I be able to?  Only time will tell.

I hate having to rely on others.  It’s something that I’ve had to increasingly do over the past week because of how my legs have been feeling.  But, I’ve come to realize that there is a strength in asking others for help.  There’s strength in knowing what your limits are and in being able to voice them to others.  I could certainly refuse the help and ultimately fall because of my own weakness.  Or, I could let my loved ones help me and we’d both be stronger for it.   As hard and as humbling as it may be, I’m choosing to let them help me.   I hope that one day, I’ll be able to return the favor.

Having a sensitivity to heat and/or cold can be one of the more frustrating symptoms of demyelinating diseases.  Checking the weather report becomes a necessity every day, not just when you’re planning a picnic or a trip to the lake with your family and friends.  Even the most beautiful of days can become an enemy, depending on how hot or cold it is outside.

What is it?

For those with demyelinating diseases, temperature sensitivity is a temporary worsening of symptoms whenever you get too hot or too cold.  When your body temperature returns to normal, your symptoms improve.  Most people with demyelinating diseases have a sensitivity to heat although it is possible to have a sensitivity to cold or both hot and cold.

What causes it?

There are many different causes of temperature sensitivity.  Depending on circumstances, the occasional sensitivity to hot or cold is perfectly normal and not cause of concern.  However, if the temperature sensitivity is a symptom you haven’t experienced before, it’s definitely worth it to get checked out by a doctor since temperature sensitivity can be an indicator that something serious is going on.

• Demyelinating diseases - Multiple Sclerosis in particular is known for causing temperature sensitivity
• Fever - Can be from the common cold and the flu
• Hot Flashes - Menopause and perimenopause
• Infection
• Cold Sweats or Chills
• Thyroid Disorder
• Depression
• Anemia
• Migraine
• Panic Disorder

These are just some of the various causes of temperature sensititivity.  For a more complete list, you can visit:  Wrong Diagnosis

What causes the worsening of demeylinating disease symptoms with Temperature Sensitivity?

A change in body temperature, particularly an increase in body temperature, makes it harder for your nervous system to send messages around the body.  If your nerves are already damaged due to demyelination, even a slight increase or decrease in body temperature can make it even more difficult for your central nervous system to do its job.

It’s important to note that once your body gets back to its normal temperature, the worsening of your symptoms should subside.  While no additional demyelination is done to your nerves during a temperature sensitivity induced worsening of symptoms, you still need to be cautious as it can cause exhaustion and even heat related problems such as heat stroke.

How is it diagnosed?

When dealing with temperature sensitivity, a doctor will rely heavily upon you, your medical history, and your experiences.  That’s why it’s especially important to make note of instances where you believe heat and/or cold played a role in worsening your symptoms.  Remember, if you have a demyelinating disease, your symptoms should return to “normal” when your body returns to its normal temperature.

If you believe your temperature sensitivity is because of some other cause, you still need to make a note of when the temperature sensitivity happened, what was going on at the time (were you sick, had a migraine, etc…), what the weather was like if you were outside, whether the sensitivity was to heat or cold, how long it lasted, and what, if anything, made it better.

A test that you can try at home if you are worried you might have temperature sensitivity due to your demyelinating disease is to take a hot bath or a quick dip in a hot tub.  If you’re symptoms get worse while you’re in the bath/hot tub and then get better when you get out, you have a temperature sensitivity to heat.  An interesting thing about this “hot bath” test is it was routinely one of the ways used by doctors to diagnose Multiple Sclerosis for many, many years.

How is it treated?

If your temperature sensitivity is due to migraines, anemia, menopause, panic disorder, depression, thyroid disorder or a bacterial infection, medication will be prescribed by your doctor to help with it.  If it’s due to a viral infection, you’ll just have to ride it out, boost your immune system as best as you can, and get lots of rest.

If  your temperature sensitivity is due to a demyelinating disease, the best thing you can do is try to avoid getting overheated or too cold.  Staying inside and using the air conditioner or heater is the best way to keep from causing a temporary worsening of your symptoms.  If you have to be active outdoors on a hot day, drink plenty of fluids, rest in the shade often, and use ice packs to cool your body down if you feel yourself getting overheated.  On cold days, bundle up and stay as warm as you can.  Whatever you do, don’t overdo it.  Rest often!

My experience

I’ve been a bit prone to getting overheated easily ever since I was little.  As one might expect, that hasn’t improved as I developed CIDP.  The hot, muggy summers where I live can be brutal for me, at times.  Since moving to a milder climate is out for the time being, I deal with my heat sensitivity as best as I can by trying to stay hydrated whenever I’m outside, resting often, and keeping an emergency stash of instant ice packs in my car.  If I start to feel like I’m getting overheated, I’ll place one of the ice packs on the inside of my wrists to get cooled down.  I try to avoid getting overheated as much as possible since it completely drains my energy and leaves me exhausted afterwards.

For more information, visit any of these links:

http://www.wrongdiagnosis.com/sym/temperature_sensitivity.htm#causestypes 

http://www.mothernature.com/Library/Bookshelf/Books/16/223.cfm 

http://www.nationalmssociety.org/about-multiple-sclerosis/treatments/exacerbations/heattemperature-sensitivity/index.aspx

One of the greatest tools a person with a demyelinating disease can use when it comes to treating their disease is keeping a medical journal. It’s simple and quick to do, yet the impact it can have on how your demyelinating disease is treated is astounding.

What does it do?

Keeping a medical journal allows you to track your symptoms.  There are two approaches to keeping a medical journal.  You can:

1. Track just your symptoms and how they change on a daily basis
2. Track all of the following:
   • Amount of food eaten, what kind, and when
   • Amount of water drunk
   • Activities (grocery shopping, doctor’s appointment, gardening, etc… )
   • Amount of exercise
   • Amount of sleep
   • Medications and supplements taken
   • Severity of symptoms
   • Any observations on what made your symptoms immediately worse, better, etc…

Obviously the second choice, while being a little bit more time consuming, would give you and your doctor the best overall view of your health, what makes the symptoms for your demyelinating disease worse, and what makes them better.

Why is it important?

The biggest problem that faces people with demyelinating diseases is how often their symptoms can change.  For some people, their symptoms will get noticeably better or noticeably worse fairly quickly.  For others, the changes will happen gradually over time.  Gradual changes can be especially difficult to deal with when you have a demyelinating disease.  Because you get steadily worse over a long period of time, it can be extremely difficult to pinpoint when your symptoms began to worsen.

Also, most people with demyelinating diseases have a lot of doctor appointments.  If you try to rely on solely on your memory when your doctor asks for details about your symptoms and how you’ve been feeling since the last appointment, you can forget to tell them something important.  If your doctor doesn’t have all of the information on your overall health, they can’t come up with the best plan of care for you and your demyelinating disease.  Even the smallest details can have a large impact on your treatment plan.

Things to keep in mind

Keeping a medical journal doesn’t have to be a time consuming experience.  Take 15 minutes, each day, before you go to bed to jot down the things you’ve done that day, rate how your symptoms are, and make note of any significant changes or odd feelings.

When you go to your doctor appointments, bring the journal with you.  Better yet, make copies to give to your doctor of the medical journal entries you’ve made since your last appointment.  Those copies can then become part of your medical record.

My experience

I try to chronicle any significant changes in my symptoms on my computer.  I’ve found it extremely helpful for me to read over past entries in order to get a gauge of how my CIDP and various CIDP related symptoms are doing.  Admittedly, I could get much better about making my journal entries every day.

As a special note, I decided to file “Keeping a Medical Journal” in the Treatment category because it can impact how your doctor treats you and your demyelinating disease.

I don’t usually put two “Living with CIDP” posts back to back but I had an appointment with my neurologist today.  Since I want to give everyone an accurate view of how CIDP affects my life, I think it would be helpful for me to blog about my various doctor’s appointments.

But first, a little background.  Dr. K is the fourth neurologist I’ve seen over the past five years.  I’ve been a patient of his for over a year now.  I was first referred to him by my family practitioner because Dr. K specializes in diseases that cause demyelination.  Dr. K is hands down the best neurologist I have seen to date.  I’ve spoken with some of his other patients and they all agree.  I firmly believe that if I was seeing a different neurologist, I would still be stuck in limbo-land and be without a diagnosis.

Dr. K was actually running on time today.  I think that’s the first time since I started seeing him for my CIDP that he wasn’t behind schedule.  While some people might get annoyed at a doctor running an hour behind schedule (which is common with Dr. K)  I don’t.  The reason why he runs behind is because he spends all the time he needs with each of his patients.  When I see him, I know I won’t be rushed out of the exam room.  I just bring an extra book or two with me to read while I wait.

Today was my second appointment with him after I received my diagnosis of CIDP in July.  It’s my first after receiving my first round of IVIg treatment.  So far, I feel pretty good.  This is the best I’ve felt in roughly three years.  The tingling and numbness in my hands and arms has drastically reduced.  The tingling and numbness in my legs has stayed fairly steady.  It’s the first time since my body decided it needed some demyelination that my legs have felt worse than my arms.   I’ve had a couple days of weakness this week that has me a bit worried.  Otherwise, it’s so far, so good.

We discussed when I should receive my second dose of IVIg.  It’s going to be tentatively scheduled for two months from now.  I’m going to receive it at home next time, which will be a huge blessing.  I can curl up on my couch and sleep, watch a movie, or read when I’m getting it.  The outpatient center I received my first IVIg dose in was nice but I’ll definitely be more comfortable at home.  Since I handled the first round of IVIg like a champ, I’m going to try to get my IVIg infusion over three days instead of five.  Doing so ups the chances of awful IVIg side effects like migraines and joint achiness but I’m willing to take the risk.  I can always go back to a five day infusion rate if I don’t handle it well.

One of the things Dr. K stressed to me today was that because of my CIDP, the demylination that’s been caused, and the various muscle damage I have, my endurance will never be the same.  I’ll tire more quickly now, something that I’m definitely aware of whenever I even slightly overdo it.  He told me to listen to my body and whenever I start to get shaky or feel weak to rest.  If I don’t, I’ll exhaust myself.

Even though I know Dr. K is right, it’s still hard to hear.  I’m 30 years old with three children all under the age of 10.  I want to be active in their lives.  I want to be a Room Mother and go on all of their field trips.  I want to sew costumes for the Christmas play or act as a coach for the sports teams at their school.  I desperately want to do all of these things but I can’t.  I have to carefully balance the things I need to do and the things I want to do.  If I don’t, I’ll push myself too hard and then I’ll be no good to anyone.  Thankfully, I have good kids who understand that mommy’s sick.  I just hate that they have to be understanding.

My next appointment with him is in two months although he did tell me to call if I started to get worse.  Still, all in all, Dr. K and I are optimistic that I’ll keep improving with time.

It seems like it’s been ages since I’ve updated. For that, I apologize. Life just has a nasty habit of creeping up on me from time to time and demanding my attention.

I had a different blog post in mind that I wanted to make tonight, but I changed my mind when I decided to take a peek at my blog stats for September and October. I’m glad I did because I think what I now want to post about is much more important than my original idea.

In looking at my blog stats, I noticed how many people that have made their way to my humble little blog about demyelinating diseases from search engines like Google and AOL Search. I looked over the search terms that people are using to find their way to my blog and I was struck by how many people there are out there that looking for answers. My heart breaks for you all. I’m struggling back tears as I write this.

I spent five years of my life looking for answers to what was going on with me neurologically. It’s so hard to know that something is wrong with you but you don’t know what it is. You feel so powerless. I spent so much time wishing for some diagnosis, any diagnosis, because with a diagnosis, I could start treatment and work on getting better. It’s even worse when you know you have a demyelinating disease but you don’t know which one. You know there’s nerve and muscle damage that’s being done to your body but you’re powerless to stop it because you simply don’t know how.

There are those of you out there who are looking for a cure for the tingling, the muscle spasms, the fatigue… for the demyelination that’s being caused. I desperately wish I could give you one. Since I can’t, I will happily offer an ear to listen, a shoulder to cry on, a hug when you need it, and a virtual party for all of your successes and good days along the way.

While I know I don’t have all the answers to the questions that bring you here, I will do my best to answer anything I can and support you when you need it. I’m honored and humbled that you decided to check out my blog as you search for answers to the demyelinating diseases that bring you here. I sincerely hope that you stay awhile and share your stories and knowledge with me as I share them with you.