MS Sucks!

I knew this process wasn't going to be easy but the last few days have been really rough. Everything hurts. I am used to my muscles hurting all the time, but now my joints hurt too. It just sucks. Several other people have needed blood transfusions. I am fortunate that I have been able to drink my electrolytes and plenty of water and eat every meal. Yesterday my blood was taken and I had a consultation with the doctor. My white blood cell count was 200 cells per microliter. My hemoglobin was 10.6 so it is very unlikely that I will be needing a blood transfusion. My cell counts probably won't get lower than they were yesterday. The doctor said for most patients, day 6 after stem cell transplant is usually the low point, and then the cell counts start to rise. Today is day 7. One person in group 1 is already out of neutropenia today. Her white blood cell count was 3500 cells per microliter. I had a good number of stem cells harvested, so I hope I will make a quick recovery as wel...

I have come down significantly from the high I felt on Monday of this week, when I got my stem cell re-infusion. This is to be expected with this treatment, but it feels horrible, nonetheless. Yesterday (Wednesday), I had my blood tested, and a consultation with Dr. Ruiz, Jr. He looked at the results and was pleased to tell me that I am officially in neutropenia, which means I have extremely low levels of neutrophils. My neutrophil count was 1,000 cells per microliter. He also said I am anemic. He didn't need to tell me that, I can totally feel it. I have never felt as bad in my life as I did yesterday. I felt like my body was done. I am so weak and tired, and I keep taking naps during the day, so of course, I am having trouble sleeping through the night. Today I am determined not to nap. Thanks to coke and coffee, so far, so good. A couple of people who are usually much more able bodied than I am are currently in wheelchairs, because they don't have enough strength to walk aro...

Today I got a strange message from Jon Lovitz. OMG it is hilarious! I don't know how you did this Paul, but it's so cool and I will treasure it always. Message from Jon Lovitz:  https://www.cameo.com/recipient/613d24b32d1ed4001db4c61a?utm_medium=owned-crm&utm_source=email&utm_audience=customer&utm_type=singlesend&utm_subtype=crm&utm_drip=email&j=4fe8187a865f65a5d592520c2c7796c5&utm_campaign=Triggered%3ACus%3ATar%3ACRM%3ACompleted&sub=613cf9f03abe47001dbec9ce&_branch_match_id=966678972262778070

Today is the day I celebrate my stem cell birthday with Brogan, Coleen and Ann!!! I can't believe this day is finally here! Today we were re-infused with our own stem cells, and given the greatest gift we could ever get! It's a day of new beginnings. Dr. Juan Carlos in the dark scrubs                                                       Me, Coleen, Dr. Ruiz and Ann (missing Brogan) Brogan and Dr. Ruiz Me, Renee, Karen, Coleen, Dr. Ruiz, Ann and Rayna Me and Dr. Ruiz

These past two days have been busy and exhausting. Yesterday we traveled to a hospital to have PICC line inserted into a vein in my chest. This was done under anesthesia. All I can remember is the doctor asking me if I know my ABCs, and I said what? He asked me again, and I answered yes. I don't think I even started to recite the alphabet at all.  I woke up in what felt like one second later, and I was about to ask if we were getting started yet. I looked down to my left and realized the PICC line was already in. I was able to choose which side to get the PICC line in and I am very glad I chose my left side, since I am right handed. I almost chose the right side based on the way I sleep, but every time I move my left arm and hand I can feel the PICC line, and it hurts and gets irritated. I'm glad this thing comes out on Monday. Still a little woozy after surgery This morning my friend Brogan and I had apheresis  - they took our blood out through the PICC line, removed the stem...

Photo by Scott Johnston, taken on the rooftop the morning of September 7th. Last night there was a 7.0 earthquake just outside of Acapulco. We are staying 5 hours northeast in Puebla, Mexico on the 4th floor of a building built in the 1970's. My sister who has more experience with earthquakes than I, jumped up right away when she felt the smaller preshocks and started yelling it's an earthquake! But I didn't believe her. She ran to the door and was like, we gotta go! But I still didn't believe her, I couldn't feel anything until it really got underway. By the time we were heading down the stairs the entire building was cracking and swaying and it was hard to stay balanced, especially for me, since I can barely keep my balance without an earthquake. Renee was begging me to hurry up because we didn't know if the shaking would continue, and start to break apart the building. I told her to run ahead since I was slow. She ran out of the building and told everyone I w...

This post is for anyone who has been recently diagnosed with PPMS or any other autoimmune disease that can be helped by HSCT. Don't wait, you don't have as much time as you think.  If you live in the US your neurologist will likely tell you that you are not that bad, or not that far along, or you are doing SO WELL on your DMDs that you don't need HSCT.  They will tell you that if you have HSCT in Mexico or Russia you will come back in a body bag. Ignore them, it's your body, and you are the one in extreme pain, deteriorating, losing your balance, eyesight, ability to walk or talk. They do not know what it's like, even if they empathize and say they do. THEY DON'T. They are not losing anything, if anything they are gaining by having you as a patient. If your HSCT is successful, you won't need a neurologist anymore. Just after I was diagnosed with PPMS, I had a consultation with Dr. Burt and Dr. Balabanov. At the time my EDSS score was 1.5. I was told that I w...

It's not only the proper method for drinking tequila, the Mexican Method is how Clinica Ruiz treats MS with HSCT. It is based on the method used by Dr. Burt at Northwestern. Image from Clinica Ruiz  I am in Group 2 and there are 4 people in my group. Myself, and 3 women, 2 who have RRMS and one who has chronic inflammatory demyelinating polyneuropathy (CIDP) which is a disease similar to MS. The only difference is the location of the nerves that are being attacked by the immune system. With MS there is damage to the nerves within the brain and spinal cord. With CIDP the damage is in the peripheral nerves, which means the nerves outside the brain and spinal cord. On September 1st, we had several consultations. And I had a consultation with Dr. Ruiz himself! I wish I got a picture, but maybe another day. It was wonderful to meet him. He asked what I thought of the COR and how things were going. I told him I am very impressed with everything. He was intrigued to learn that I have a ve...

My sister  Renee and I left Chicago from O'hare Airport on Sunday, August 29th to travel to Clinica Ruiz in Puebla Mexico. We had a connecting flight in Houston. There was not  much time between flights, and I said to Renee - I hope the other gate is close. She said - It probably isn't. She was right, it was in terminal B and we were in terminal C, but the airport staff were WONDERFUL about getting us on our next flight. It was quite an adventure with the combination of a transport taxi and a staff member pushing me in a wheelchair on and off the train, then all the way onto the tarmac and up a ramp to the door of the small plane that was to take us into Puebla. It was a new experience for me since I have always been able to walk through an airport in the past. But we never would have made our flight if I had to walk that distance. The smaller plane held around 75 people but the flight was smooth and uneventful. When we arrived in Puebla our driver Javier from Clinica Ruiz wa...