Introduction

I was diagnosed with CIDP just two weeks ago. I am still coming to grips with the specific diagnosis, but I have known there was probably something wrong for a couple of years now. I have the relapsing/remitting type, which I guess means I can have long periods of time where I experience no symptoms, and then out of nowhere it can come back. Based on my medical history my neurologist believes that I have had CIDP since my teenage years, and looking back at many different events in my life that makes sense. I am by no means an expert on CIDP. I know that it is a neurological disorder where your auto immune system attacks your nerves, similar to MS. However, CIDP attacks your peripheral nervous system whereas MS attacks your central nervous system. Here are some other things I've learned:

1. It is not a death sentence

2. It impacts everyone differently
3. It is about 1/10 as prevalent as MS, which is why there are no bike rides or running events to raise money and awareness
4. The symptoms are treatable, but as of yet it is not curable (although there is some promising breakthroughs in stem cell research)

A couple of years ago, I started documenting my stories… Not because I planned to share them, but more so because it helped me get a better understanding of myself. Now with the recent diagnosis, I have decided to share them. I will have a bunch of posts that I will deem 'pre-diagnosis' which will come soon, and the post diagnosis will begin as I start to come to terms with CIDP.

Ding Ding Ding Ding…We have a winner!!!

I took my test earlier this week and I passed (a test I did not want to pass) with flying colors. The week has been a whirlwind of emotions and I am now on my way to a well earned family vacation! First, I had the spinal tap on Monday and all went well. I did not have the headache they warned me about, so I got on a plane and went off to work on Tuesday. I was on pins and needles waiting for the results, but I tried to push the anxiety aside and get to work. Tuesday went well, but on Wednesday I could barely work because of the pain in my head and shoulders. Long story short…the pain from a spinal tap typically BEGINS 48 hours after the procedure and can last up to one week. The pain was debilitating, and I had to lay down for three straight days! My wife was fairly understanding…so in the end it all worked out.

Now, while this was going on I received the results from the test. The Dr’s message was that the tests confirmed that I had elevated protein in my spinal fluid. Huh? I had read that elevated protein and elevated white blood cells = MS, and he said nothing about the blood cells, so I took that as a good sign. PLUS, the nurse said that I had Demyelinating Neuropothy…that it would fix itself…and not to google it. Well…that worked about as well as when I tell my dogs to ignore the cake on the counter. As soon as I was off the phone with her I was up on the counter…all up in that cake. The more I read, the more confused I got. Most of the time demyelinating neuropathy’s are brought up with CIDP and Guillian Bar’s Syndrome (GBS), and I knew I did not have GBS, so I was confused. I knew that CIDP was serious and rare, but he did not say CIDP so I was not sure what he meant. I set up an appointment with the dr on Friday and did my best not to eat the cake.

By the time Friday came around I could barely stand up due to the pain. I took a double dose of pain killers and headed off to the Dr. In the lobby the receptionist said I had to re-fill out the paperwork…I told her I was not going to, and she repeated that I had to. I scribbled NO CHANGES on the front and threw the clip board back at her and said that was the best she was getting. I am usually a nice person, but given the circumstances I think I get a pass!

So, by the time I see the dr. I have to lay down to keep from screaming in pain. He comes in and asks if I want to sit up…I tell him no and he proceeds. He repeats the diagnosis, again in cryptic dr talk, so I ask him what resources I could go to for more information. He says to go to the Cleveland clinic web site and look up CIDP. There it was. A five year journey coming to a sudden SCREETCHING HAULT. If I had been standing, I would have collapsed. This is the point in a movie where the dramatic music fades away and you are left with a maddening silence. The silence lasts longer than anyone is really comfortable with, but there is no dialogue that can change the moment…CIDP. I have wanted answers for the last five years, but now that I had them I wanted to put the genie back in the bottle. CIDP. Chronic, Inflammatory, Demyelinating PolyNeuropathy. I remember reading that CIDP was like MS without the bike rides because it is much more rare. MS starts central and works it’s way outward…CIDP starts outward and works it’s way inward. CIDP. CIDP. CIDP. For the last 30 hours those letters have gone through my mind 1,000 times!

This is the cliff hanger that ends the second book of my life and keeps me on the edge of my seat to see what the third book has in store…As devastating as Good Friday was (Ironic that it was on Good Friday that I got the diagnosis…I guess that Good Friday was pretty bad for Jesus as well!), it actually answers a lot of questions.

My ankles quit working when I was 15…CIDP. I have had lower back pain on and off throughout my life…CIDP. What felt like a pinched nerve on and off throughout college…CIDP. The last two years of my streak I had many runs where I could not muster up enough energy to even complete the mile…CIDP.

My Dr. believes that I have had this since adolescence. That means that…I have become that ‘rock-star’ that I described a while ago in spite of CIDP. I ran every day for five years with CIDP. I have completed 5 marathons with CIDP. I have had a very successful career with CIDP. I have a phenomenal family, with CIDP. CIDP is an obstacle that I have been overcoming for many years…just because it has a name now does not meant that I will fight it any differently. CIDP does not define who I am…CIDP does not define who I will be…The wounds are still too fresh for me to understand that…but I am on my way. Stay tuned for the next book in my life. I do not know the outcome yet, but I hope to make it a story of thriving and surviving!

I'm BAAAAACK!

It has been a while. Things have been going good…The kids are growing fast, work is going great, all in all things are pretty good which is why I have not written anything in a while. The last time I went to the Neurologist he did not seem concerned. In fact, he said the next step was most likely the psychologist because it was likely stress related, or in my head. I know the mind is a powerful tool…but I also know that this shit is real. However, since it does not impact my motor skills, he said there was no reason to worry and to come back if things got much worse. Over a couple month period I felt the numbness slowly move from my foot all the way up to my knee. It had been about 9 months since my neurologist called me crazy, so I figured I would give it one more shot and if he still thought I was crazy than I would get another opinion. I also found some information on-line on Gluten intolerance, and some symptoms that sounded very similar to mine.

So, I scheduled a visit to the Neurologist and gave up Gluten. I was pretty gung ho on the Gluten thing…I finally found symptoms that related to mine, which means I could have found the source, and if the source is Gluten…well that would be Awesome to know! A trip to the local sprouts health food market and I was all set.

Then, at the Neurologist he decided to re-run some tests. The tests showed nerve deterioration, and from that point on the dr’s tone got a little more serious. At some point I realized that up until the point that the tests showed issues, he had no reason to believe that anything I described to him was true. By nature I am a sceptic of others, so I understand his point of view, but I never once thought that he did not believe me about the numbness until that point. I brought up to him the Gluten free angle, and he was fairly certain that it would have no impact, but it would not have a negative impact and placebo's have been effective for some things in life, so he said go ahead. He ordered a spinal tap ASAP…which is a critical step in diagnosing diseases like MS. There is an 80%-90% chance that, if I have MS it will show up on the tests. That also means that a negative test does not mean I am in the clear, but it will give me some peace of mind.

I am not sure whether to be happy or sad or scared. I could be two weeks from knowing what is going on, which would be a good think, except that it would mean that something serious is wrong with me. It has forced me to face the issue head on, and I am scared shitless. I have barely slept in the last week, and my mind is constantly racing at 100 miles a minute. All I can do is count the ticks on the clock until it is time to get my tests and get the results…Tick Tock Tick Tock…