So I think I have had a post already (https://blaesing-thompson.blogspot.com/2019/11/the-weird-of-ms.html) about my slew of not great health and stressors in my life over the last 17 months. The latest adventures involve the edition of two new physicians, more tests, more MRIs and a new game plan.
I had mentioned about having Parathesia, a mild tingling sensation kind of like touching a low voltage electric fence, or a tuning fork after its humming, since 2007. I also mentioned Dysesthesia that was just in my left foot for several years which makes my foot feel like it’s tender and sunburned.
Most of the time I didn’t notice it except in the evenings or when I’d get over tired or stressed. The dysethesia spread in November of 2019 so my MS doc, who was too busy to see me, gave me a huge dose of Gabapentin and told me to ramp up and call me if I had new symptoms (uh hello... this is a new symptom). My regular doc, who is great but out of her element with me and my health adventures added a super low dose of Cymbalta as it is also supposed to help block nerve sensations. I had been seeing her regularly because my thyroid numbers have been all over the place too the last year. Well it did not work and it made my Eosinophilic Esophagitis worse, and so did adding a T3 med for my thyroid!
In my November post I was working through my medical professionals and finding life to be very frustrating. Because of my Eosinophilic Esophagitis (fancy name for food sensitivities searing the inside of my esophagus) I spent part of 2018 and all of 2019 navigating what foods upset my system and what was seemingly benign. I worked with a very expensive dietitian who ran food sensitivity tests, as well as two allergists, and had an esophageal scope and saw a ENT specialist none of which really helped me figure out what I can and can't eat to keep from burning the inside of my esophagus and upper GI track. The one allergist said this is normally a disease that comes up in children and by cutting out gluten they grow out of it. He also said they are setting up a clinic to study it in children (that's super helpful) but also that it is becoming more common in adults as well.
When it is unmanaged I get a sensation of having something stuck in my throat when I swallow things especially late in the day. If it gets totally unmanaged I get severe chest pain in the middle of my chest and back. Once they figured out what it was and I cut out processed foods especially things with gluten (every damn thing) I started doing better but was still experiencing a hoarseness caused by mild reflux in my esophagus. I've been a walking talking science experiment as I work through things. Here is what I've learned... I can eat cooked cabbage but not coleslaw. I can have baked eggs or hard boiled eggs but eggs in any other format give me horrible heartburn. I can have super small doses of things with wheat, but add barley or some other grains like that and horrible heartburn again. I can't have almonds or strawberries but blueberries, peanuts and cashews are fine. These are just a few examples of me attempting to navigate things. I also have sensitivities to some of the additives that go in foods which sucks because they are in everything and reading labels is no fun and going out to eat just depresses me. Yeah I have cried a lot, over all the food I've lost from my life because I really like food and I hate being different especially at family gatherings!! My dietitian did her best but with the long line of issues noted in my 2019 holiday letter intro (https://blaesing-thompson.blogspot.com/2020/02/holiday-letter-2019.html) she was fighting an uphill battle.
My mom, who was back from Florida to be there for grandpa's passing right after Thanksgiving, demanded I call the Ruan MS doctor and make an appointment right then and there (took two weeks but finally navigated that process) and my dietitian and my therapist both agreed working with a highly recommended functional health internal medicine doc in Ankeny was also a good plan as they look at whole health outside of pharmaceutical based treating of symptoms that most MDs are stuck with. So at the end of January I finally saw Dr Hughes who is amazing and incredibly knowledgeable on all things MS. He ran labs and did double MRIs to see what is going on as my last MS doc was against that and hadn't run one in over two years. We found out my oral med may have been a huge contributor to my GI issues as well as not working all that well since we found a new active lesion on my left lobe which is probably the cause of my dysethesia. I nearly cried when left his office because it was such a different experience then I'd had with an MS doc the last seven years. We are now working through the paperwork to get me on Ocrevus which is a newer infusion based med. It may be pretty expensive out of pocket to start to working through all that (single mom, high debt load from divorce = no money).
I also saw Dr Lorentzen in Ankeny this week and she ran a bunch more tests to look at deficiencies and things we can adjust with herbs and diet to calm everything back down. So for the first time in two years I have hope my health is finally going to get better. I suspect there is still a bit of an uphill climb as we work through meds and such over the coming months, but HOPE FEELS SO GREAT!!
My folks have been awesome through this as well as my great friends Adri, Lee, Bob, Lisa, Bonnie, my therapist, ad my running group, and of course my honey Steve (I probably missed a couple more but know I appreciate all of you). One of them has lifted me up every time I fell down in despair the last year and I am so very grateful for each and every one of them.
I know that is a giant pile of blog posts in the last couple of days but thanks as always for reading. I appreciate the positive energy each and every one of you sends me. It makes a difference! I love you guys and gals!!
