For months I was experiencing an increase in my NMO symptoms. While I communicated this to my neurologist, I had no new lesions to back up a new acute treatment. I was asking for steroids; heck, I was willing to go through plasmapheresis just to get some relief. My neurologist was very hesitant to give me anything since I didn't have any new lesions. She ran some labs to see how my body levels were. My labs came back a day later, only to find out that I had severe Iron and Vitamin B12 deficiency. Anemia, in other words.
Anemia felt like an NMO flare
This was causing me a lot of symptoms that felt like an NMO flare.
I was extremely fatigued, weak, and felt heavy overall, like a sack of potatoes. I would wake up with pounding headaches as soon as I lifted my head from the pillow. I was also experiencing severe headaches and cold hands and feet. I was always so cold.
At first, I thought it was a lack of Vitamin D or the cold from living in New England.
Daily tasks were becoming hard to do. I was craving red meats and chocolates. I was losing a good amount of long-strand hair, and it was scary. It was weird. I almost thought I was pregnant.
But as soon as my labs came in, I was sent to a hematologist as a "stat." They saw how severely the anemia was affecting me.
At the hematologist
On my first visit to the hematologist, they looked over my labs and talked about my medical history. The doctor quickly made some calls, and I got my very first infusion of Venofer that same day.
Venofer is an iron sucrose that helps by replenishing the iron the body produces. It was introduced via an IV, and it was a dark color. It tasted like molasses in my mouth. I had no allergic reaction, which was good. I also received a Vitamin B12 shot in my arm.
Weekly anemia treatment: infusions and shots
I had to do one infusion of both Venofer iron sucrose and Vitamin B12 shot once a week for 4 weeks. I continued the Vitamin B12 shot once a month for 6 months. It was a weekly commitment but for the bettering of my health.
Headed to the GI doc: you're putting what, where?
I was also sent to a GI doctor to check for internal bleeding. The GI doctor suggested I get an endoscopy and colonoscopy. I’ve never had that type of procedure done. It sounded scary, but I was willing to do it long as it benefited my health.
The prep was... sh***y
The process of getting ready for this type of procedure is actually worse than the procedure itself. I basically lived in the bathroom for 12 hours, pooping my life away. Lord, I did not realize we hold so much crap inside of us!
The colic pain and combination of incontinence scared me. I was afraid of going number two in the wrong place, so I basically set up a mini office in the bathroom.
I was clean!
On the day of the procedure, everything went smoothly, and thankfully, nothing was found to be wrong. I had a clean bill of health from the GI doctor, and that made me happy—one less thing to worry about.
The anemia diet
I started incorporating more iron-friendly foods into my diet. My mother made beet and carrot juice and cooked liver for me. The taste is different but not bad. This was out of my norm to eat but yummy to try. I also went back to juicing, and that really helped and provided a lot of fiber.
One of my favorite and most flavorful juices is kale, spinach, carrot, green apple, ginger, turmeric, and lime juice. Although it can be a bit spicy, it is mighty powerful!
Listen to your body and speak up to your doctor!
If my neurologist had not looked beyond my diagnosis of NMO, I would have probably never known I was anemic. It takes time to feel the effects of the infusions, and even after my 4th infusion, I didn’t feel better.
My headaches slowly started fading away, and I wasn’t feeling as heavy. Although my hands and feet continue to feel cold, I have a feeling that’s due to New England weather. I also gained some weight, but for my health, I’m okay with that.
If you're feeling off in any of your symptoms, I would suggest going to your doctor and mentioning you want your iron profile checked. You might never know if some of your symptoms are coming from different things other than just NMO.
Were you misdiagnosed, prior to being diagnosed with NMOSD?