Well, I figure it's about time I update a little on here. First of all, I ending up having a seizure episode (several seizures again) on the 27th of April. Insurance decided to try and deny since I got sent from work. They evidently try to pin it on a third party whenever they can (which, who can blame them? ER visits are EXPENSIVE!!!). My PCP (thankfully!) was my doctor and when I said that I felt like crap he said "Well good, cuz you look like crap!" To understand the humor in this, you have to understand that he and I are like that, we give each other grief back and forth. He cares a lot about me though, and is basically the best doctor I've ever had, so I'll keep him, even if he does make fun of me sometimes. When I feel better I ALWAYS give it back! :) Anyway, he did take me seriously when I said that I was not feeling well and this was not a "normal" seizure. Yes, it's sad when seizures are a normal part of life, but it is par for the course with this disease. At any rate, my Magnesium level was TOO low. Which could easily have contributed to the seizures. Not to mention I was majorly overheating! I am NOT looking forward to summer. Maybe I can find a way to get a cooling vest or something to wear to work. Minnesota is a bit behind schedule where the weather change is concerned, but today it is HUMID. So Sidekick (Karin) and I decided to skip our walk and shoot for another day. Sooo...my PCP wanted me to follow up with him. That was today.
My back is MAJORLY out of placement. Doctor did what he could to adjust my alignment...it was at least an inch off, which is not terribly surprising given that I have Scoliosis and Degenerative Disc Disease. He wanted to crack my back, but my muscles were far too tense to allow for that. He still wants to crack it at some point, but that's something we'll have to shoot for next appointment. Interestingly, my blood pressure was a little low at 98/62. This has been a trend lately. Usually, when I'm seizing my blood pressure and pulse shoot way up. My kidneys are STILL giving me troubles. I'm afraid another stone is either there or developing. I see Dr. Latefi on June 5 to follow up with that. I still need to do the 24 hour urine collection which will tell them what in my urine makes me predisposed to developing stones. I also went for a massage yesterday morning, which has helped a little with my pain. Definitely something I need to do on a more regular basis. We redrew a Magnesium level which is JUST BARELY normal. So looks like Mag oxide and Mag Glycinate are going to be my besties for a while. Such is life. Need to make sure that Magnesium level stays stable. We can't have anything more contribute to these darn seizures!!
On to some not so great news, I did not pass two of my classes. This only means that I will probably have to retake them next year, but that's OK. I have been through a lot this year, and it's amazing that I did as much as I did with everything considered. I have talked to the LPN instructors and it sounds like I will be speaking to the nursing students about Mitochondrial disease. This is a HUGE step. I feel it's VERY important to educate the medical community on Mito because if I can prevent anyone from going through what I did I will do it!
My doctor is also planning to talk to someone from the University of Minnesota within the next week. We are looking at a more clear molecular diagnosis to see what part of the Energy Production Cycle is not working. This will be especially important to modify my Mito cocktail (which I have yet to be on, I'm on some things that are in it though) as well as giving me an idea of how much genetic material is involved whenever I decide to have children. So I am cautiously optimistic about that. My case manager seemed to think the U would be a great idea since they do a lot of research.
I'm doing my best to just keep going right now, so far things are somewhat stable. I am doing my best to stay as healthy and stable as possible. Please pray for stability.
Sami
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