6 weeks Post op, 5th DMT for MS and a New Diagnosis

I haven’t posted in a while. It seems 2022 is determined to keep throwing shit at me and see if I make it through. There were no complications during surgery, though I was told pre surgery I would most likely not require a drain bulb or a catheter and I actually had both.

The drain (I like to refer to it as a blood grenade since that is what it looks like) was in for a week and I actually anticipated complications after it’s removal and a possible infection since my body seems to like those these days. It was removed with no issue. The catheter was because when MS flairs sometimes other things related to it do too, in this case, my bladder refused to empty completely.

My official 6 weeks isn’t until tomorrow but it’s close enough. I have been finding it hard to meet both water AND protein goals every day. It seems I focus on one and the other fails. After numerous incidents of fainting (yep, I hit the floor hard, and once fell backwards into our very hard shower) I messaged the dietitian to see how to meet both. I was told focus on water first.

I bumped up my calories, including carbs and some salt after my physical therapist refused to do anything with me when I came for my appointment very dizzy (more than my normal balance issues and vertigo). She took my blood pressure and it was 84/62, too low for any pt. She then performed the blood pressure testing for POTs (Postural orthostatic tachycardia syndrome) and it was confirmed.

She asked me to follow up with my regular doctor for the official diagnosis since she’s a physical therapist. She wanted to send me out via a ride so as not to drive but I am a bit stubborn and had been passing out for weeks now. The problem doesn’t happen while I’m sitting, it’s when I go vertical from any position.

My doctor told me to see my cardiologist since I have one that I saw to sign off on my sleeve surgery because of tachycardia and neurogenic cardio syncope (a diagnosis I’ve had since I was 13). So in 2 days I see my cardiologist because I need the official diagnosis and to determine if I am to go back on beta blockers before I can go back to physical therapy.

As for my weight loss, I’ve lost the same amount in 5 weeks as 6 months of Keto but since I gained all that plus some during COVID I have some more to go before I actually hit that weight goal.

As for my next disease modifying therapy for MS, I agreed to try Kesimpta. Apparently I have 15 more years of inflammation and activity opportunity so they would rather I try this medication. My hesitation lies in that it’s very similar to Ocrevus and I’m allergic to that. My doctor was kind enough to explain where it binds to cells and what makes it different enough from Ocrevus that is “should” be safe. Also stating they have yet to have anyone with an allergy but I also pointed out until me, they didn’t have anyone with an Ocrevus allergy.

He told me to take my first shot on a week day so if I have an allergic reaction I can come to the hospital and he will be there. Also, if I am allergic or have a reaction other than injection site that I cannot tolerate I can join a study they are doing for a new medication.

So I sit in limbo for the time being. Waiting for Kesimpta to call and arrange delivery. Waiting for my cardiologist appointment to find out what POTs looks like with a gastric sleeve since I can no longer chug water or eat lots of food. I currently can only eat about 3 ounces or 1/3 cup of food every few hours. So while I’m less likely to suffer death like it was looming over a few months ago, I have new struggles in sight.

One thought on “6 weeks Post op, 5th DMT for MS and a New Diagnosis

  1. Atarah, thank you for sharing your journey. I know from the caregiver side how frustrating all the “I don’t know”s can be for the patient. And I’m also quite familiar with “Of course it will happen—it’s me” syndrome. We are keeping you in our thoughts. Much love!

    Liked by 1 person

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