My MS Story
This is the first time I have posted anything on here. Writing my story was very cathartic. 😊 It's quite lengthy, but I hope it resonates with you as others stories have with me.
The journey began
I went to see my primary care doctor, and the journey began to figure out what was wrong. Pinched nerve, lyme disease, lupus, ALS, HIV, RA; the list goes on. Most of these could be ruled out using blood tests etc. When all of that was ruled out, I was referred to a neurologist. I started seeing the neurologist and having MRI’s done. My initial MRI showed some lesions on the spine, but the MRI of my brain didn’t have any, so my neurologist sent me to see another specialized neurologist at Saint Elizabeth hospital in Boston, MA. After my initial visit with him they decided to admit me the following week to do more comprehensive testing.
Scared out of my mind
Now it is May 2000. I’m admitted to the hospital, scared out of my mind! What's wrong with me, why hospitalization?!? If they did explain why, I certainly didn’t hear or comprehend any of it at that point! All of my family lived in Colorado. So my mom flew out to MA to be with me. Thankfully I had some very wonderful friends by my side until she arrived.
Now they begin with testing. We started back at the beginning. They ordered every blood test under the sun to rule out everything possible (lyme disease, lupus, RA, ALS, HIV/Aids). MRI of the brain and spine with and without contrast, gain, NO brain lesions, but there are lesions on the spine.
Having a spinal tap
So because there were no lesions on my brain, the next thing to do was a spinal tap and an EEG. Having a spinal tap had to be the most HORRIBLE experience I have EVER had! I was already anxious about the whole hospitalization thing, but now THIS! You have to stay in the fetal position and “not move”! Now I have to tell you that Saint Elizabeth's is a teaching hospital. I have no problem with that. Prior to learning I had to have the spinal tap, I had met the residents alongside my neurologist. So now it is spinal tap time; the three resident doctors I met the day before were all in my room. Family and friends could not stay for the procedure. The a**hole resident performing the procedure had NO bedside manner! One of the residents was just “observing,” and the third resident was a kind and wonderful woman who could see I was in distress. So she squatted down next to me, stroked my hair and talked to me during the procedure. Unfortunately, the results did show the relevant proteins. With those results, the MRI and EEG, I was diagnosed with RRMS.
Good as new
I wound up with a “spinal headache” which is compared to a very intense migraine! They wouldn't discharge me from the hospital until the headache was gone. 24 hours later they sent me home. A home health nurse came and administered IV solumedrol therapy for 3 consecutive days. Voila! I was good as new! Saw my original neurologist for follow up. He started me on Copaxone. I very quickly realized I was not going to be compliant, as I hated injecting myself every day! However, I continued on it until I found out I was pregnant in October 2000. I had a pretty easy pregnancy and felt pretty good! My daughter was born in May 2001! That May was MUCH happier than the year before! Started right back on Copaxone, which unfortunately meant I couldn't breastfeed. But the neurologist explained that it was to keep the MS from taking over after all the pregnancy hormones were gone.
I stopped using DMTs
In July 2001, I moved home to Colorado. I knew I'd need the support of my family with a new baby and MS! I found a new neurologist that I wasn't totally happy with, but stayed on Copaxone and my MRI's continued to be stable. I don't remember when I finally decided I didn't want to keep injecting myself everyday. But I stopped using it and went for a few years not using any DMT’s. Probably not a wise choice! But I felt great! And didn’t have any relapses for a long time.
My brain MRI showed lesions
I found a new neurologist and started on Rebif around 2005, and did much better giving myself injections every 3 days. I went for many years without a relapse, then had one or two, but the MS went back to remission after treatment with Prednisone. In 2010, my brain MRI showed lesions. I switched from Rebif to Tecfidera in 2010 because Rebif must not have been working to prevent new lesions. After that things were “stable" again. I had to change neurologists again because of insurance, but continued on Tecfidera. One of the best things about Tecfidera is that it's an oral pill NOT another injection!!!
In 2015 I started having some minor mobility issues with the left leg again, treated with Prednisone, but it didn't remit that time. Then in October 2016, I fell at work and split my chin open. After that I started using a cane, then in December 2016 my right leg started getting stiff and spastic, so I started using a walker when necessary. Brain MRI in 1/2017 was still "stable." But now because of the increased disability, they said I am Relapsing Progressive. They took me off of Tecfidera. Although my MRI was still “stable” the medicine was no longer preventing progression. There are not many treatment options for Progressive MS. They use infusion therapy. My neurologist told me he had good outcomes using Rituxin with his progressive MS patients. It is an IV therapy used for RA and certain types of cancer. It is essentially a smaller dose of chemotherapy. My first 1000 mg Rituxin infusion was in June 2017, second one in December 2017.
Once again, a new neurologist
I stopped working in May 2018 because of continued disability problems. Once again had to get a new neurologist due to insurance. Saw a new guy in June. He is ok… I am going to Denver Health, all the neurologists are associated with University of Colorado Anschutz. So another teaching facility. I have loved the residents that I've seen. I am not exactly thrilled with the attending neurologist that oversees my treatment. He seems very “uninterested” in me as a patient and that does not make me overly confident in his ability to treat me. He told me on my first visit that he thinks that “Rituxin may not be doing anything for me and there are currently no other DM treatment options.” I left there thinking “Gee, thank you for the encouraging first visit doc, nice to meet you too.” Then he left it up to me to decide whether or not to do another infusion.
Again, it’s “stable”
I had the 3rd Rituxin infusion in July 2018 but the dose was decreased to 500 mg. My neurologist told me that is normal to decrease the dosage in subsequent infusions. I’m supposed to have another infusion in January. I had an MRI last month and again it's “stable.” So that tells me that Rituxin is preventing new lesions, and might be stopping progression? Some days my legs are better than others. But a lot of times not so much. I have had three occasions where I have not been able to get this neurologist to respond to questions in a timely manner. When he finally does, it is almost a week later and only after I am persistent with multiple calls/emails to his nursing staff.
Acupuncture and aquatic therapy
So now what?? I use a walker at all times. I have a wheelchair that I use sometimes around the house when my legs are really bad. And if I go out anywhere that will require a lot of walking, I take the wheelchair because I can't walk more than 25 feet without struggling, even with my walker. I have started seeing an acupuncturist who is also a chiropractor. I LOVE him! He is VERY interested in helping me. He not only gives me treatments, but he talks to me about diet and things I need to be doing to help strengthen my legs. He has suggested aquatic therapy. So I have found that the rec center near my home has an arthritis water therapy class, and I'm going to start doing this with my mother. It will be beneficial for us both! I usually get 2 good days with my legs after I see the acupuncturist. I still have to use a walker, but my legs feel better! Not so stiff and spastic. I have only been seeing the acuchiro (my own made up name for what he does 😊) every 2-3 weeks, but I think I will start going once a week since it seems to be helping! Acupuncture treatment goes way back to 198 BC. It helps people with a multitude of issues. So if China and India have used and trusted it that long, what have I got to lose!!
So many unknowns
I don't know if I want to continue to see my current neurologist or any neurologist for that matter! But I know I have to continue to see someone, at least once a year. I guess I will find someone new... again.
Anyone who lives with this disease knows the utter frustration that comes with it. There are still so many unknowns. And every single person that is fighting against it has different symptoms. My best friend, Lisa, has MS. Her disease is totally different than mine. We tell each other all the time that we don't know how the other person can endure their issues. What all of us know, who are living with this disease; we are ALL strong and we will ALL keep fighting this disease together!
The last thing I want is for anyone to feel sorry for me or pity me. We all have our own journey to follow. This is my journey. I am very blessed to have amazing family and friends. Overall my life is pretty damn good!
Have you ever heard someone say the following: