Wednesday, January 19, 2022

Time For Battle Against Neuro Behcet's

September 1, 2021 I woke up feeling terrible. Body aches, throat ulcers, itching at my shingles scar, and I had hives. Most likely I had a fever as well. But I don't recall my temperature. 

I remember being surprised and baffled by how quickly the flare came on. I hadn't been sick like this since July 10, 2020. So almost a year. During the July flare I had colitis and required IV Fluids and prednisone. The prednisone must have done the trick. Because I don't recall the flare lasting excessively long. 

So, in September when I flared we had just moved into a new home and a new area. So my Rheumatologist and physician was in Southern CA and I was in the North. At that point, if I were in my right mind I should have called my Rheumi immediately and gotten prednisone. But I wasn't in my right mind. And Leif was only home half of the days of the week as he worked in San Francisco. And commuted home on his days off. With this flare I was instantly non functionally exhausted. Everything that was in progress was halted drastically. The fact that I returned the litter of puppies I was fostering shows the extent of my fatigue. 

I must have finally taken some prednisone mid September because although I was still exhausted, I took on more puppies and even kittens. But that didn't last long. And then on October 25th I took on Stevie our foster puppy who requires diapers. Although he added work. He gave back and we fell in love with him. He was a good motivator to pull me out of bed. Along with my 4 year old who is still in diapers (only because I have ZERO ability to consistently potty train.) 

So October continued with severe fatigue and mental fog and cognitive decline. And by then I'm pretty sure I was back to cussing (I know I am now). Which happens with Neuro flare ups. And on November 5th and 6th I facebook about Severe headaches. I remember that I'm pretty sure I threw up at that time too they were so bad and finally I took sumatriptan and packed my head with ice. The rest of the month is a blur. By then depression and cutting were definitely on board. The feeling that I was useless. So sick! I'm estimating that this is when I really started noticing CNS symptoms. Muscle twitches, warm spots (feels like a lighter up to your skin), and my knees and thighs started to tremble as I walked down the stairs. November and December I also battled terrible water retention in my arms and hands. Especially in the mornings. I finally took some prescription diuretic I had from the past. Looks like that's happening here in January too. Probably hormonal. 

In December I started feeling abdominal tremors. Something I have never felt before. A sensation like the muscles and everything inside is vibrating. No pain. Just incredibly strange and annoying. The Christmas season lightened the depression. But the CNS symptoms and cognitive decline came front and center. Also muscle twitch/rolling in the tummy. I honestly wondered if I was miraculously pregnant. Of course I wasn't. Another symptom that was an issue in December was jaw jerking. It's happened in the past too. 

In December I got really sick from an infection. Probably covid. Though the test said it was negative. During the two weeks I was sick I had Horrible nerve pain in my teeth and jaw. We concluded it wasn't congestion because it randomly affected different parts of my mouth. Including the lower jaw so bad I though I'd broke a tooth. The catch is, many of my teeth are fake and bridged. So it felt like phantom pains in my mouth. Extremely strange and painful.

So now it's mid January. And all of these symptoms and more are happening on practically a daily basis. So I am desperate and starting to get Leif nervous. He didn't like seeing my legs shake as I walked down the stairs. And he Really didn't like me talking about Multiple Sclerosis. So, for the last month or so Leif has been prepping for a new job. So we have held off on medical procedures because of that. As well as covid nonsense. But finally I had a clear enough brain to start researching the differences between Behcet's and MS. Because with all of the CNS symptoms we thought I might have MS and that the protocol for MS was different then just prednisone. But I found a study done comparing the two diseases and it is very very likely tht this is just an extension into neuro behcet's from the typical Behcet's that I've already been diagnosed with. And we found another study laying out the treatment plan for neuro behcets. And the first line of defense is always prednisone. So it WAY PAST TIME to start this battle. But here we are. Luckily I have a months worth of pills from my sweet boys who don't use them regularly. So 20mg a day until we see serious improvement and then taper. In the meantime get an MRI. and new doctors. 


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