Reply To: Second Nerve Conduction Study, What to do?

August 19, 2013 at 10:25 pm


First off I do not have CIDP nor had I heard of it before. I was doing a search on nerve conduction studies for my upcoming test and this site with your post popped up. I did look it up briefly to see exactly what CIDP is because of how upset you have been.

I wanted to write to you because I see this is an inflammatory disease that causes damage on that I have a lot of experience because I was diagnosed almost 4 years ago with Mixed Connective Tissue Disease and Lupus. Basically overlapping auto immune diseases that attack many parts of the body with inflammation and do much damage at least in my case.

In the last 3 years I have gone from just being tired and in a lot of pain for unknown reasons to not being able to work, many days not having the energy to take a shower and most importantly learning to put it all in Gods hands and take each day the best I can. My disease is attacking my connective tissue and what in your body is not connective tissue? When I was first diagnosed I had a few months of freaking out and my husband would say well it is not stage 4 cancer. Ok true it is not. I now have COPD – never smoked but lungs are being attacked along with muscles, tendons, ligaments and blood vessels and many other things. I now have so many specialist Rheumatologist, Pulmonologist, Neurologist, Pain Management and Ortho. So yes it was very scary, painful, life altering and eventually probably fatal but I have learned a couple of things that have changed my life for the better. I know that sounds crazy but it is true. I now know what things are really important in life and have learned to not worry about the small things. I have learned we do not have much control of what might or might not happen to us but we have so much more control than we think about how we deal with it.
My body does not work like it use to but it is amazing the ways I have found to work around things.

It is great to research and know as much as you can about your disease but never think it is worse case until it is proven and even if that happens you are probably so much stronger than you think you are.

I really wanted to talk to you about meds. I love steroids/prednisone has become my very best friend in this life. Does it have some nasty side effects yes sure it does but for me it is the only medication that can calm the disease down enough that I can be in less pain, get out of bed and feel almost normal again. They do not let me take it all the time but I do look forward to the periods where I get to be on it for a week or month at a time. I look at it this way if I am stuck with a disease that is already damaging and tearing up my body if there is something out there that can make me feel 80% better and give me a better quality of life ( I want it ).

On top of the regular pain, weakness, lung/breathing issues and so many others now I have a herniated disc in my neck, carpal tunnel and have no reflexes in my left arm. I have sharp stabbing pain in both upper and lower extremities with numbness and tingling getting worse in my hands and feet. They are doing many tests now and maybe my immune system is now attacking the nerves and I do have CIDP or something similar but if that comes up I will get whatever treatment I can.

Just remember that stress and worrying is one of the worse things you can do for your immune system and inflammation in your body. There are so many new treatments out there for all diseases so never give up thinking you won’t be able to get help and mostly if the time comes where it comes to a bad medication being what you need remember it might not be bad for you. If it was up to me I would take prednisone everyday for the rest of my life even if that mean a shorter time. I truly believe in quality over quantity.

I know what I am saying is easier said than done but I would like to think I can share something positive out of the last 4 years of misery but at the same time I am still a happy person who tries to live each day to the fullest. As my physical life becomes harder I notice my mental life becomes stronger. I never knew I could be this strong and I am sure you are too.

I send prayers, good thoughts and positive vibes your way.