Am I cured?

It is the four letter "c" word that send shivers down the spine of any doctor or health care professional.  Using it inappropriately can spell disaster for anyone in the medical field with your low breed ambulance chasing lawyers looking to file suit on whoever dares even mutter the word.  Yes, I am talking about cure.

Now as a patient it is much easier for us to bandy around such venacular as we don't have the same fears or reservations.  As patients we don't have to worry about the statistical inference of how a specific sample population responded to a treatment.  Our sample group has a very selfish population sample of just one and if it feels like a cure why don't we just call it that.

There has been debate on the forum as to whether or not HSCT is a cure for autoimmune diseases or not.  After all, although it has been highly successful in most cases, it is not completely successful in all of them.  So, it is not a cure for everyone.  But I am a selfish patient so the question I will be asking is has it cured me?

Now I suffered from chronic inflammatory demyelinating polyneuropathy.  Chronic basically means for a long period of time.  Now I suffered from CIDP for a long period of time but am I still suffering?  A question I will visit later.

Inflammatory is basically referring to a biological action to a harmful stimuli.  In this case my immune system.  Now we can measure the amount of inflammatory process going on in an individual with a blood test of C reactive proteins or CRP.  A normal test should be less than five, but it can sometimes be elevated for obvious reasons.  For example, if you went 12 rounds with a heavy weight champion you would have an elevated CRP.  But my CRP has remained less than 5 for over a year which would indicate there is no inflammatory response happening in my body.

Thirdly, demyelinating.  Essentially the process of the myelin sheath being stripped away from the nerve. Essentially it is a present participle verb.  Meaning that the action is happening right now.  However, EMG results would show that this is not the case and my nerves are actually regrowing.  So the is no demyelinating process underway.

Polyneuropathy.  Poly means many. Neuro means nerves.  Pathy refers to disease.  Essentially, disease of many nerves.  If you look at my EMG results I do still have abnormal nerve conduction which could be used as evidence that I am still not cured.

In essence I think that it really comes down to whether you believe the disease refers to the current state of the nerves or whether it refer to the active destruction of my nerves.  I am going to go with the latter and boldly say I am cured.  However, one could argue that the disease is still present, just in a dormant, inactive phase, like a volcano.  The medical profession has a word for this too.  It's called remission.  Personally, with no autoimmune disease markers or CRP in my blood test results I still like cure but I guess everyone can make up their own mind.  Until next time, stay well:)

Week 9

Week 9 and I'm feeling fine.  Seriously, I feel like I'm 95% of the way back to normal.  I haven't caught any bugs for a while now with the exception of the cold I got a few weeks ago which isn't so bad, it just seems to be lingering.  I still get tired unexpectedly from time to time and when I eat I sometimes get bad indigestion which seems to be subsiding over time.

But the most encouraging thing is the blood results.  There is still a few things outside of the normal range but they all are consistently getting better with the exception of the neutrophils which are really low.  Almost non existent low.

However, the best result was from a test call C Reactive Protein (CRP).  CRP is a crude measurement of inflammation in the body.  It is limited though.  Although it will tell you if there is an inflammatory process happening in the body,  it cannot tell you where or how many locations the inflammation is occurring in.  So it could be caused by anything from certain types of cancer to a sprained ankle or a kidney stone.  The point is if your CRP is high you have an inflammatory process somewhere in your body.

Now my disease that I treated with my stem cell transplant is CIDP, standing for chronic inflammatory demyelinating polyneuropathy.  The key word here being inflammatory.  So some one with CIDP should always have an elevated CRP.  Now back at the end of April my CRP was over 100 which is substantially elevated since normal is supposed to be between 0 and 5.  

Now post transplant the elevated reading could have been because of damage from the chemo or the neupogen shots, so that reading should probably be discarded.  But my last reading was 4!  Yes inside the normal range which means I currently do not have an inflammatory process happening in my body, including CIDP.  Well, that's it from me for now, until next time, stay well:)