This blog post consists of opinions, my own experience, and helpful resources. Any major treatment decisions, or anything regarding your own, individual MS and Health should always be discussed with your health care professional. Links appear to helpful resources. Clicking them will open up a new tab, so you won’t loose your place in the blog.
Yesterday, I called to let my MS Specialist’s office. They mistakenly rescheduled me for another Teledoc appointment, instead of an in person visit. I have spent the last year in North Carolina, with my parents who are retired professors, homeschooling my two young children. I’m soon returning to California, and after a year of not seeing my MS Specialist in person, I was really looking forward to an evaluation of my future MRI and update on my MS disease activity. In our Teledoc appointment in April, we had discussed the reality that Abbvie is not continuing the elezanumab clinical trial into phase 3. (I had participated in the phase 2a trial for 18 months in 2019-2020.)
I was noticing improvements that I had attributed to the trial, only to find out the endpoints of the trial had not been met. She explained that this meant others in the trial hadn’t experienced the same improvements I had noticed.
Still, my MS Specialist had assured me that if we found that I did receive the elezanumab drug, and not placebo, we could try to petition for a phase 2b of the trial. She had also told me that she was reviewing other regenerative medicine trials that could be a possibility for me to join. She said that we had not observed improvement in my lesions on my MRI, so she didn’t think elezanumab, or the placebo, was really showing promise for me. At the same time, she wasn’t discounting my experience either.
That is why I have treasured my relationship with my MS Specialist. She has been seeing me since I was pregnant with my son, who is now five. She never tried to discourage me from extended breastfeeding, since I had been successful with my daughter, nursing her throughout my second pregnancy without relapses or new lesions. She respected my own feelings about my body, and my desire to protect them through breastfeeding from the autoimmune diseases that run in my family.
She helped me get on Ocrevus when I was nervous to start a new medication months after weaning my son. I’ve been stable on the medication. I have felt well cared under her guidance. So, I was shocked when I was informed over the phone that my MS Specialist is retiring at the end of this month. She had given no indication of retiring when we spoke, and we had both been planning to resume our visits when I return to California. I was dumbstruck.
Now it’s a game of wait and see. I requested to be seen by an associate, another MS Specialist, at UCIrvine, whom had conducted clinical trial evaluations during the elezanumab clinical trial. I was very interested in a fundraising video on new research for a clinical trial on how low levels of a sugar metabolite is associated with mulitple sclerosis:
GlcNAc regulates protein glycosylation, a fundamental process that decorates the surface of all cells with complex sugars. Previous preclinical, human genetic and ex vivo human mechanistic studies revealed that GlcNAc reduces proinflammatory immune responses, promotes myelin repair, and decreases neurodegeneration. Combined with the new findings, the data suggest that GlcNAc deficiency may promote progressive disease and neurodegeneration in patients with MS. However, additional human clinical studies are required to confirm this hypothesis.http://som.uci.edu/news_releases/Low-sugar-associates-with-disability-neurodegeneration-in-multiple-sclerosis.asp
So, I’m pivoting my focus from elezanumab, for now, to this N-acetylglucosamine research. If they really could “Pour some sugar on me!” and help my cells be protected while encouraging remyelination, that is a trial I would be interested in participating in. The video below, sent by UCI notes that they are still in the fundraising process. For information on directly donating to the trial. For more information on donating directly to this research, here is the contact listed in the email:
Interestingly, related to my previous side about breastfeeding, N-acetylglucosamine is a compound found in breastmilk, and I am really interested in learning more about this research. I have hypothesized if this simple sugar compound was protecting me from a relapse during breastfeeding, however until more research is known, again this is just a hypothesis.
There’s just a lot up in the air right now. I have spent time counseling members on MS Healthline toward resources to find a new neurologist or MS Specialist. I am shocked to unexpectedly find myself in the same boat. I’m trying to not stress and use this as a learning opportunity, as well as a fresh start. I may look into other MS specialists, though I really want to see the specialist I mentioned at UCIrvine. Still, I have no guarantee as to whether or not my selected replacement will accept me as a patient. I’ll know more next week.
In the back of my mind I wonder whether I have blogged to much, had too loose of lips, so I’m going to stop dropping names. I purposely left out names from this blog. I don’t really know the rules yet, this is all new territory, blogging about MS Specialists. I just want an appointment, and as a patient who has been dutifully attending appointments in the UCI system for five years, I really hope they still want to look after me.
These are stressful times for everyone, including health care providers. There is even more demand placed on our MS Specialists, Neurologists, and their offices, so it’s best to also grant them some grace. However, I’ll still be my own advocate, and keep calling until I have a new MS Specialist.
Are you going through a similar situation? It can be so stressful searching for a neurologist or MS Specialist. I really know because I spent three years in California with no regular neurologist or MS specialist. I had seen two that I didn’t mesh with, and didn’t see again. Finding my MS Specialist had been a Godsend, with help from my mother in law and well meaning people. Cog fog is difficult. Finding a neurologist or MS Specialist to manage your MS treatment is difficult. We all need someone who listens and is a partner in our treatment. Here are some resources that can hopefully help.
May God be with you till we meet again. 🧡🙏🏼