Treatment vs. No treatment

General General CIDP Discussion
1

Dear friends,

I would very much like to know if anyone with a severe, Chronic, progressive diagnosis has opted for no treatment, ever. I am mainly asking those who have been diagnosed for years, as I don't see anyone really addressing this option. I may have missed the discussion, but it seems like nobody talks about it much. I read about those who don't have a choice due to insurance issues etc., and are forced not to have treatment until things change, but not from those who make an informed choice not to have treatment. For years I read everything I could find from Peter Dycks, and other neurologists about the results from treatment vs. non-treatment. I spent time with my neurologist and went over what I read. At that time, to me, the treatment did not seem to offer any real, lasting positive results for more than 2-3 months, and that worked only for around 50 percent of those treated. I asked the neurologist if what I found in study was accurate and he said yes. We were also taking into consideration the fact that since childhood, my body's severe reaction to many prescribed drugs was atypical; also, I had been diagnosed at the same time of CIDP, with CFS and Fibromyalgia. I then asked him what he would advise his own sister or mother to do if they had this serious diagnosis, and my history. He said he agreed with my choice at the time, but if I became totally bedridden and unable to function, I should consider the treatment.

I would like to note two other things that I have wondered about through the years as to whether they contributed to the CIDP/Fibro diagnosis. The first is that I had up to 36 shots per week, several times per year as a child, due to severe bronchial infections and asthma issues, and those injection areas have stayed painful and run along nerve lines. Also, when my brother and I were little, while visiting some relatives in an agricultural area of Oregon, we were out in the strawberry and bean fields playing. We suddenly began to get violently ill and were rushed to the hospital. They didn't know how to treat us and we barely made it through. To this day we have many of the same symptoms but he has never gone for any diagnoses. I don't take opting out of treatment lightly, but when I read the side affects that many experience with chemical intervention, for me personally, I feel I made the right decision. I share some of my story for those who like me have opted out of treatment for various reasons, because I do not see too much written for folks like us. I certainly am not suggesting that anyone choose as I have. This is a very personal, individual choice, for each of us, based on many factors. I believe we need good, sound counsel to make such decisions.

2

Well, if I had no treatment, I would probably be dead by now. At one point my legs were completely paralyzed, and I was losing the ability to move my arms. The next steps after that are loss of ability to swallow, and loss of ability to breathe.

Now, with regular treatment, I am able to lead a relatively normal life. I am significantly weaker than I used to be, and get tired very easily. But, I can still walk, drive, and do most other ordinary activities.

So, I would definitely not be an advocate of foregoing treatment.

3

Bill,

I am in no way advocating people should NOT choose treatment. I simply shared that for me, it hasn't seemed to be an option, yet, due to my severe reaction to meds and my other medical conditions. I have been bedridden and partially paralyzed at times, but it hasn't been constant. I am so thankful that the treatment is helping you and so many others. Again, I firmly believe we need to do whatever works for us and that it is very individual.

4

This is a very personal choice. However, since I feel the benefit outweighs the risk, I would not consider not having treatment. Like Uncle Bill, I can see a real improvement with treatment. It has not been without side effects but being able to walk is more important to me. Each of us make our own choices.

5

It sounds like the choice for you was the right one. I think your key statement was... that for you, the benefits outweighed the risks. That isn't true for everyone.There are those who cannot survive the treatment, just as some cannot survive Chemo, who have Cancer, due to a weakened system, or even those who do not want their body to undergoe the process of chemical intervention. I respect their choices as well. My immune system would not survive the traditional treatments, but I am sure glad they work well for others.

I would still sure like to hear from someone, if there is anyone, as I originally asked, that has opted out of treatment, for whatever reason, and has severe Chronic CIDP.