I had previously posted the mystery of having the overwhelming sensation of both mental & physical fatigue almost take over my body to the point that I felt as though I was three times my normal gravity pull. I wasnt sure exactly what caused the situation, only what I was doing at the time of the incident which was playing Monopoly and I had also indicated that I had bypassed an article about the Dysautonomia connection to impairment and or fatigue brought on by solving simple math problems. At the time it was hard to immagine, but after the fact, I had wished I had read the article in its entirety to see what exactly I was dealing with.
I spent the better part of the next day trying to create the same type of crippling effects that I had done the day before with the Monopoly and I was completely unsuccessful, this included doing bills, reading, researching and pretty much over working the brain so I could duplicate the incident and better understand it. My efforts were all in vain and I just kept looking online for more and more information in regards to that issue but I had not found anything helpful. My history recheck was not as of yet helpful, I hadnt realized just how much research I had done in the past 8 or 9 weeks. I had visited so many sites, forums, blogs etc.. that it would take me a good week to revisit all of them. I would imagine its going to be a needle in a haystack to find that identical article. Of course the information in regards to Dysautonomia in general lists brain fog, short term memory loss, confusion, inability to recall familiar areas and so on, its not the same connection thats bugging me to death now. Having OCD along with all of this isnt helpful because now its a mission to find that information in direct regards to the math issue.
My son returned for a short visit and asked to play Monopoly and for a moment I chose not to play because of timing issues but then I thought perhaps the stimulation of the game might just be that correct irritant I needed to become symptomatic so I could better evaluate & confirm the possibilities of what I was dealing with. I accepted his challenge. As the game started, all was well, I was sharp as a tack no math problem to large to do in my head as I have done for all the years of my life. As we progressed into the middle part of the game, I noticed a decline, not so much in the ability to solve but in the ability to maintain the information (A+B=C I would forget either A or B and have to ask my son to repeat one of the two). The game went on and as we got further into the game, the decline became more and more evident and before long, the physical fatigue began. I had begun to lose the comfortable use of my arms, now each dice roll felt as though I was rolling cinderblocks and my shoulders began to ache. I had severe burning in my legs now which I had not had before, it was only isolated to my toes and I was becoming not only extremely uncomfortable but extremely agitated and angry. I felt a complete transformation of my personality due to the overwhelming effects that this game was now taking on my body and mind. I kept fighting the side effects because as much as it was killing me, I knew that knowledge inevitabley will be power. The more I know about what plagues me and how, when, where, the better equipped I will be to deal with it.
I pushed on, by now math was almost impossible and I was saying everything outloud over and over again so that my son would hopefully answer it because it was now taking me upwards of a minute or more to figure out how to make change of a five hundred dollar bill when a three hundred twenty dollar property was purchased. This extended torture now led to the inability to read the Chance & Community Chest cards, my vision had become so impaired that I could not even read. It was double/blurred vision and I grabbed my Blackberry and also realized that I could no longer read my text field. I was really pushing it hard now but where do you stop when everything you have going on is your body essentially messing with you?
When my vision was impaired the last time in 2010, I went from 20/10/ 20/15 to 20/40 overnight. Doctor of course said that due to age it happens, sight one day, nothing the next. I called bullshit because in my world everything has an explaination, I dont go for the cop out. He wrote me a prescription for glasses and the only thing that prevented him from pushing the issue was a black box that blocked my field of vision which he could not diagnose. I was sent to a Nuero-opthamologist that became frustrated when my tests would vary each visit. He sent me to a retina-opthamologist to further the diagnosis and find the illusive black box. The retina specialist also started with the same bs about age and losing sight all of a sudden blah blah blah but for some reason he was stumbling over his tongue when he returned to find out that I had retested at 20/25 & borderline 20/20. Whats the matter doc, is it a miracle or were you perhaps premature in running your mouth? They never did find the cause of the black box, I did this past year on a Dysautonomia symptom chart of things that happen less frequently to some patients.
So getting back to the game and my slow decline in mental function and sudden physical dispair, my neck had become so stiff that I could hardly turn it and I was having problems completing sentences. I used the wrong words, or would get so far off topic my son would look at me like I had a polar bear crapping on my head. It was then that I decided to stop the game, I was afraid that the progression might lead to a more severe complication that could leave me incapcitated and I wasnt ready to risk that.
When I stood up, I was visibly shaky, dizzy, unstable but no signs of presyncope. Heartrate was normal for the most part and I just move slowly with the wall near by. We moved to the couch and I just fell into it. I was demolished. His mom called and made arrangements to pick the kids up which after this was a god send. I forced myself to get up and dress Gia while we waited for their mom to get here.
After they left, I made lunch, having to lock my knees so that my legs wouldnt shake so severely, my arms were so fatigued that even cutting the bread seemed like the hardest task, I was totally shocked. I retreated to the couch and began to eat. That was over four hours ago and I still have severe muscle fatigue to the point that even the slightest physical function causes shaking. I need to sue the makers of Monopoly, I didnt realize it was such a deadly game to play.
So now the hard part, finding the connection of syndrome to the catalyst which in this case happens to be Monopoly. I had far more symptoms to play with so I kept hitting them in until I was finally able to not only connect with a good possibility but I come across the whole mother load. Every detail right down to the visual and along with all of it lies the mathematics difficulty, fatigue etc... Each time I come across stuff like this I am always first blown away because its like I wrote it about myself but then I am like, damn some other poor soul has this same crap? To hit upon something that links up identically to exactly what I experienced brings me great pleasure that I am not losing my mind but I know that finding a dr in my area that isnt going to want to send me in for yet another mental evaluation is always something I fear. Nothing worse then telling someone the truth, proving it and have them still want to find a reason to disprove it because its "complicated". Well Dr Douchebag, ever think of what its like to HAVE the issue? Maybe thats complicated too. My family dr isnt the problem, its the specialists I have to deal with. My Nuerologist, who by the way overlooked EVERYTHING as far as I am concerned and should have picked up on this, is one of those doctors that scratches his head with disbelief, kisses my ass with the "we'll keep trying buddy until we get it" and then dictates in his reports "highly recommend mental evaluation of possible underlying past trauma". Well, already went to your recommended dr, he realeased me because he couldnt understand why I was there in the first place. So now you go back and look at ALL THE FACTS and just like I have, with the exception my name doesnt have MD after it, you realize that ALL of my medical issues are not only direct complications of Dysautonomia, I have two other doctors scratching their heads because the issues I have in their field of expertise i.e. Gastroenterology and Urology doesnt comply with the normal medical situations they see in other patients. IBS (Irritable Bowel Syndrome) without any sign of the normal irritable bowel infection or irritation. (hint, Dysautonomia IBS is a nerve driven issue). Kidney stones with high phospherous & calcuim composition that has no dietary connection. (Dysautonomia has the unique ability to dump certain high level compounds into the urine which causes abnormal stone formations that baffle Urologists that arent aware of the presense of other Dysautonomia symptoms or ailments). I had a lithrotripsy on my kidney to break up stones three days prior to seeing my Nuerologist and told him about the wierd compound of the stones, also telling him about the severe pain in my side that I was going to see a Gastroenterologist about and he could only offer that I had bad luck. Perhaps a doctor whos specialty is ANS, CNS should pick up on the fact that Dysautonomia is an ANS disorder and two of the MANY problems I had, I was having at the time of his visit. Thats my biggest issue with non city doctors. A big city doctor might have asked a few more questions or looked into my chart a bit closer.
I think I left everyone in enough suspense while I wandered off there, the diagnosis I matched up to almost 99.99 persent making it my biological father, is ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). Another linked facet of Dysautonomia that of all of them with the exception of Shy-Dragar Syndrome, is the most draining. I have a friend that suffers from this and shes absolutely miserable most of the time and now I can TOTALLY relate to her misery. Mine so far is only brought on my Monopoly for the most part the most severe of symptoms but at what point will I become worse? Each day is without a doubt a learning experience. I am probably the perfect person to have something like this because of my Aires determination to push the envelope to produce symptoms for my own research and developement and now my blog might someday help in the early detection for someone who has some odd symptoms that feels they shouldnt share with a doctor as of yet, or has shared and has hit stone walls as I have. Once I get into a full and complete understanding of all the dos and donts this syndrome have to offer, its time to get verbal and make people realize its ok to come forward and be persistant to get answers. There are only a million or so Dysautonomia patients in the USA but I am betting there are another 10 million that are getting the run around like I have over the past 11 years because not enough literature is available to get people to start to investigate the possibilities on their own of having it.
In closing I have gotten to the point that the unexplained isnt good enough anymore. Even when it comes to home based symptoms. If I can duplicate it, document and learn from it I am going to do so. Each time I go to the doctor now, they will have to convince me in an entirely different way because quite honestly I have become extremely knowledgable about this syndrome but also I have the edge, direct link to the test subject, myself. Thanks for reading.
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