Everything started in the summer of 1996 while serving a mission for the church in NY city. I was bit by a tick on a beautiful summer afternoon while walking in Great Neck, NY. We didnt think much of it until all of the sudden a few days later I had a really bad back pain , the kind of pain that you can't move, like electric shocks going up and down your spine, hard to describe and I started feeling progressive weakness on my legs and arms,tingling,numbness. Simple things were getting harder to do. Started to lose my balance and fell several times, I couldnt go up the stairs without crawling and was unable to ride my bike or walk long distances.
After seeing several doctors in NY and had a few test done, they were not able to diagnosed me and I was sent back to Florida in Sept almost paralized, my speech and face muscles were getting weaker also.
I was hospitalized and after a series of tests (again) I was diagnosed with CIDP (Chronic Imflamatory Demyelatinating Polyneuropathy) a very rare autoinmune disease that attacks the neurological system. Cause "unknown".
After a few doses of IVIG and a month in the hospital , I was back to “normal” and walking in less than a month, even though doctors told us that it would take about a year to be back on my feet . That I needed to learn to walk again and take one day at a time. By the end of October I went back to NY, met great people and finished what I was doing before I got sick.
By January 1997 I had my first relapse, again once more went back to Florida. This time I was done with my mission! Then had 4 more relapses that year. Always treated with IVIG successfully and pain was under control. After relapsing so much that year the doctor put me on monthly doses of IVIG and I started taking prednisone. Not the best drug in the world , but it helped me a lot with the symptoms. In 2001 we added Cellcept to my regimen and in 2002, CIDP seemed to be progressing so we started IVIG treatments every 2 weeks and kept the same regimen with the other medicines, playing with the dosages as needed.
On February 2004 I woke up one day unable to move. We opted for Plasmapheresis (plasma exchange) for the first time, and it worked great! for a few months I didnt feel any pain any kind of symptoms. CIDP was in remission. We kept the same regimen of medicines for several years with no relapses. It was a miracle!
In 2007 during my IVIG infusion at end of March , I had what we thought it was an allergic reaction to the treatment . After a series of tests and many many doctors , the results came back as a rare skin lupus and vasculatis, even though I had no symptoms of lupus at all. We decided to try Plasmapheresis again with excellent results. Which didn't last long. In 2008 I woke up the day after treatment and couldn’t move from my neck down. By then, we knew that the only way to put CIDP on remission was by doing the plasma exchange. And we thought that was going to be my only option for the rest of my life, since there is not known cure for this disease.
In November 2009 after much research, I went to see Dr. Burt at NWH in Chicago, who is been doing a clinical trial with Stem Cell Transplant/Bone marrow transplant on patients with CIDP. My neurologist had talked to him on the phone about my case and they thought I was a good candidate for this trial. I qualified for his research and started the process with the insurance who denied to pay for the treatment at first.
Finally, after a long and painful relapse in January 2010 and a series of tests, we decided to appeal the insurance decision. On March 25th 2010, I got an exception from the insurance company to have it done. That was the happiest day of my life ! so far. And here I am now in Chicago!
It has been a long journey, where I have learned a lot about the illness and myself and how my body works. I learned to never give up, no matter what doctors say. Always doing lots of research and asking a lot of questions. It hasn't been easy living with CIDP, it s a painful ,chronic, progressive illness, very hard to explain since affects your inmune system as well as the nervous system (extremities).
I have been very blessed over the years. I 've been able to work and walk most of the time, I learned to managed it to the best of my abilities and to live with the limitations of having a chronic condition and pretty much have a "normal" life after all in between relapses. I've had a great team of doctors, nurses and pharmacist that helped me to get through all this over the years.
I am very thankful for the support I have received from my family, my closest friends and everybody that has been involved in one way or another in my life over the years.
Thank you.
