Monday, July 30, 2012

Itching......the rest of the story!

In the analysis of this blog the number one web search that brings people here aside from being newly diagnosed themselves are keywords labeled Itch and Copaxone (usually linked to each other).

This is no surprise to me because when you have tried everything short of gnawing your (insert whatever body part is itching at the time) off you "Google" right?!  Of course you do! 

If you take Copaxone you are given the long laundry list of side effects that you are given with just about any medication these days.  Yes, I read them.  Yes, they freak me out.  Yes, I still take the medicine.  I realize due to liability reasons the manufacturer has to list every occurrence of everything that may have happened during the drug study whether they can prove that it occurred because of the medicine.  I remember reading these types of drug disclosures before I gave my consent for my first child to have her immunizations.  Don't think that I didn't have second thoughts that day, I did!  But I also know that the benefits outweigh the risks and so yes, she is immunized.  But I digress.

I vaguely remember reading about itching and red lumps as injection site reactions but that seems kind of standard with a shot........right?

I took my Copaxone without a hitch for several months before IT started.  IT came on suddenly and furiously.  It is what I lovingly call the Copaxone Itch!  (When I am not in a loving mood I have another name that rhymes.)  It made me miserable!  I went to bed slathered in Hydrocortisone cream only to awaken in the night with blood under my fingernails from the scratching in my sleep.  I wore long pants in the summer to keep from clawing my legs.  I caught myself rubbing my belly in polite company.   I used hot packs. I used cold packs. I clipped my fingernails.  I took oral antihistamines.  I did everything that was suggested and then some.  And then..........


Yep, pretty much just like that!  

It was just over.  It lasted a few months.  I was not happy during that time.  I finally just told my nearest and dearest what I was going through and scratched.  Those who loved me didn't care anyway and I really was not too worried about the rest, as it turns out!  Occasionally, I will have it happen for a day or so without rhyme or reason but it doesn't stay long.  

So there is hope!  This too shall pass!  In the meantime, try all of the above.  Hopefully something will help you manage until it does stop, but mainly just keep the faith.  It will be over soon and then you can chalk it up to a past experience!

If you have had any luck with getting rid of it more quickly please share because there are many out their looking for answers.

Good luck!

Wednesday, July 25, 2012

"Am I going to die?" well yes, but probably not today....

Being newly diagnosed with Multiple Sclerosis is scary business.  

I remember the day I got the diagnosis.  It was heart breaking.  I thought my life was over.  Now that I have been on this ride for more than a year I realize that it is not over, I have been given a new life.  In the midst of all of the uncertainty with MS, I realized that I do have control over some things and that is what I can do to keep myself as healthy as possible. 

One of the first things I hear when I talk to people who are newly diagnosed is “I’m not ready to die!”  Well, the good news is, most likely that really does not need to be an immediate concern.  The fact is while we are more likely to suffer from disability in some form or another; our average life span is quite in line with the national average.  MOST people diagnosed do not die from MS but other causes, just like everyone else.  With the treatment options that have become available in the last two decades life expectancy for MS patients has steadily increased over the last 50 years and the progression of disability is able to be slowed in many cases with consistent treatment and modification of lifestyle. 

Well what does that mean - Modification of lifestyle?  It means pretty much what every doctor tells everyone.  It means you should eat more healthily, get as much exercise as you can tolerate and avoid stress.  Oh and you should take your medication regularly, not just when you feel bad or cannot function properly.  MS is described as disease with symptoms that come and go so just because you cannot see or feel an attack does not mean the disease is not progressing.  It is possible to have progression without outwardly visible signs. 

So, if you are “not ready to die!”  Listen to your doctor!   Take control of what you can in this crazy ride.  
  • ·         Make healthy menu choices; avoid high fat, high sugar foods.  
  • ·         Exercise – Keep your body in the best physical shape possible.  The blood flow is good for the brain and memory retention and the physical benefits are paramount when you have a relapse.
  • ·        Avoid stress – I know this one can be the most difficult.  Most people don’t look for stress, it finds them.  You have to learn to walk away, say no, stop and smell the roses and enjoy the moments you have.  All of that sounds so easy (and like a bunch of cliches thrown together) but it is essential for your health.  Take it slow, eliminate one stressful thing from your life, adjust and then do another.  It will pay off in the long run!

  • ·         Take your medications regularly – If you have vision problems, do you stop wearing your glasses/contacts because you can see well when you have them on?  No!  They are working so you keep wearing them!   So why would you stop taking your medicine if you feel better and fewer lesions/plaques are forming!?  It is doing its job!  Let it work!
So yes, it is a scary, crazy ride but you have  the ability to take control of some things along the way to make it a better than expected trip!