Dyke Davidoff Mason Syndrome
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Dyke Davidoff Mason Syndrome is something I've been living with since my fathers death almost 17 years ago, who passed away 3 days after my 6th birthday.
Now, before I go into any backstory. Let's explain this rare...syndrome. The main 'symptoms' or 'side effects' are seizures, mental retardation, and late milestones(learning how to walk, first words, etc.)
The cause is not really known. Something could have happened when a child is still in the womb, or up to...5, I think, months after birth.I got lucky. I only have siezures. Not epileptic seizures, mind you. To anyone else, you would never know I'm having one. I can still work, drive, run around, everything I would normally do. These seizures do not affect me externally really.
It was not always like this though. My first 'episode' was about 2 weeks after my fathers death. I remember it like it was yesterday. I was watching the Sixth Man, and I began to have these terrible convulsions.
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Cont shortly.
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Being just a young child, I had absolutely no idea what was going on. I began screaming, crying, begging for help. But it was early in the morning, and mom was still asleep. So I began to literally crawl and climb up the stairs to my moms room.
Once I finally got to her, I laid next to her, maintaining a death grip on her for 2 hours until those seizure finally stopped. This now became a regular occurrence. Even at school. I would break down and grab onto the nearest person, whether I knew them or not. I couldn't help it. I was so scared, I had no idea what was going on. This obviously affected my relationships with my peers all through my elementary years.
By the time I finally hit middle school, I had grown used to these seizures and I could just about function normally, even during one. My mom had been taking me to countless doctors, countless counselors. And they all said they were just anxiety attacks. Cont.
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But I had grown so scared of these 'anxiety attacks' that I was afraid to engage in any physical activity whatsoever, for fear of having another.
Anyway, over the years I got used to them, still thinking they were panick attacks. Well one day about 3 months ago I went to the doctor because my mom had been urging me to see because of my left/right side unevenness.
The left/ride side unevenness. Basically, it's David vs. Goliath with my left and right side of my body. The left side of my body is incredibly strong, because I do literally everything with it. My left arm and leg are crazy strong, with great movement in my joints. My right side...a little different. Very weak, gets tired easily, and an extremely visible size difference, but not freakishly so. The muscles in my right arm and leg have atrophied, from lack of use over the years. I haven't lost use of my right arm and leg, far from it, I'm just very weak on that side. Cont...
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I explained all of this to the doc, and then I also explained these anxiety attacks that I'd been having for so many years. She immediately told me that I have Dyke Davidoff Mason Syndrome, and that I'd been living with seizures, not anxiety attacks.
How could so many countless doctors have mis diagnosed me over the years? How could so many doctors have missed these signs that apparently immediately ponibted to what I actually have.
Back to the siezures. Nowadays they only last for about 20-30 mins, sometimes several times per day. When they first start, my vision gets extremely blurry, the right side of my body tenses up, and I almost immediately lose my sense of humor. Not because I'm scared or anything, I don't know why honestly.
/Story over.
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Anyone else have Dyke Davidoff Mason Syndrome? Or ever heard of it?
I just thought I would share my story, so if anyone else has 'symptoms' like this, they can look this up. Because it feels SO good to finally have an answer as to what ive been dealing with all my life.
If this isn't the definition of a TLDR, I dunno what is lol
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As a paramedic I am always interested in syndromes, diseases or illnesses that teach me how I can better care for my patients and if don't mind, I'd like to ask a few questions (if you do mind, please disregard my post):
1. Normally people who have tonic-clonic seizures (convulsions) lose all control of voluntary and some involuntary movements. They don't even breath. You're able to function normally during seizures?
2. A tonic-clonic seizure lasting 20-30 minutes is called status epileptics and is very dangerous requiring immediate medical treatment, do you take an emergency medicine to stop the seizure or just let it run it's course?
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They don't sound like true seizures
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3. What are your symptoms from a physical standpoint? Meaning, if I'm looking at you, how do I tell (short of convulsions) you're having a seizure?
4. Is this genetic or hereditary?
5. What medications do you take for the seizures or to control the seizures?
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I dont mind at all.
1. Yes, I can function normally during one. I could have one while driving, and I can continue driving normally, like nothing ever happened
2. I let it run it's course. It usually stops after about 30 mins nowadays.
3. If you are looking at me, and I'm having one, you can't tell. It's completely internal. Unless you try to have me move my right arm. It kinda tenses up, and is harder to rotate, more so than normal due to the atrophy
4. The doc said nothing about it being genetic or hereditary.
5. No medication specifically for them. I do take an anti depressant, and that sometimes lowers the frequency of occurrence of the seizures.
I know it doesn't really sound like a siezure, but it fits better than a damn anxiety attack lol, so I'm fine calling it just that
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Thanks for the info. In my opinion, sounds like a psuedo-seizure more than an anxiety attack or "real" seizure. Good luck and thanks again for the info. It's always good to learn more about things like this to better my patient care!!
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Not sure if people here besides op understand what seizures are. Not all seizures are tonic clonic. His seizure type falls more in line with partial seizures. There are also absence seizures, myoclonuc seizures, tonic clonic, atonic west syndrome etc etc. his description of a partial seizure. Im surprised your previous doctors didnt do a video ekg of you... Your symptoms didnt fit the classic signs of an anxiety attack especially because they sounded to not be caused by a tangible stimuli
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Side note, ddms looks like its super rare... Howd your current md decide it was that over an epileptic syndrome?
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Z👿 wrote:
Not sure if people here besides op understand what seizures are. Not all seizures are tonic clonic. His seizure type falls more in line with partial seizures. There are also absence seizures, myoclonuc seizures, tonic clonic, atonic west syndrome etc etc. his description of a partial seizure. Im surprised your previous doctors didnt do a video ekg of you... Your symptoms didnt fit the classic signs of an anxiety attack especially because they sounded to not be caused by a tangible stimuli
Correct, but in all seizures, you are not alert and able to function except maybe focal seizures which affect certain body parts with convulsive like activity. I have never seen a true seizure where a person could function during the seizure. I was very interested in learning more.
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I think it's focal seizures, maybe it's partial? Info on which is which?
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We covered epilepsy so long ago, im fairly sure its partial tho. Partial seizures are the 'aura' to a generalized tc seizure. They only affect part of the cerebral cortex ( and are only on one side ). Depending on the person, some people can function.... Tho i didnt think you'd be legally able to drive, theres always the risk it could spread into a generalized type seizure ( full cortex)
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Damn buddy. I didn't know you went through all that. That's crazy. I bet it feels good to have a name for what's happening. That must be hell to live with man. I'm sorry. Thanks for sharing this it was a very interesting read.
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Z👿 wrote:
We covered epilepsy so long ago, im fairly sure its partial tho. Partial seizures are the 'aura' to a generalized tc seizure. They only affect part of the cerebral cortex ( and are only on one side ). Depending on the person, some people can function.... Tho i didnt think you'd be legally able to drive, theres always the risk it could spread into a generalized type seizure ( full cortex)
Been awhile since we covered seizures as well. Thanks for the info. Guess I should head to google and my texts to brush up on the subject. 👍
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Grimm- it was at first, but now its no big. Amongst me and my close friends, my nickname is Nemo. Because I have one good arm. Ha.
Z-remember, I went to the doc originally because of the left/right side unevenness. Which I forgot to mention is the primary 'side effect' of ddms. Before I even asked about the seizures she brought up ddms. Once I told her about those, it was definite.
I had an EEG done when I was younger, and nothing came of it. I had another one done a few months ago, and it showed that the left and right side of my brain stem was uneven. That's what brought me to the doc, we thought it was a tumor
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Earlier when I said I had convulsions, I meant that's what they felt like inside. Externally, you would look at me and be like 'wtf is he on about'
When they first start, it feels like a massive electrical jolt. That's the closest thing I can relate it to. Thats my vision goes to shit, my heart beats faster, and the muscles in the right side of my body tenses up. The jolts continue every so often for about 30 mins, lessening in severity as time passes
What puzzles me the most is, there's no actual trigger to having the seizures. There's not a single thing that triggers them that I can think of. They are completely random. Maybe that had to do with the left and right side of my brain stem being uneven?
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Interesting. I was thrown off by the convulsion comment. I did a little research on ddms and learned quite a bit more. Surprisingly, there wasn't a lot of info that I found in my brief search. Thank you for sharing Picassa!
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Thanks Picasso for the great read. My son has febrile seizures. He was diagnosed at the age of 11 months. There is a history of them on his fathers side of the family. I can only imagine how nerve wracking it is to not have a diagnosis for your condition for so long. Can you tell me how old you were when they first started or when you noticed them?
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I do not have this syndrome. And because of my respect for you and this thread I will refrain from any corny given jokes.
Thank you for sharing your experience, strength, an hope. I'm sorry you had to go through all of that.Not that my next statement would or wouldn't be based off of the information you have just shared. But I would like to say, you are a great friend in my book😊👍
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What an interesting read! DDMS seems to originate from atrophy of one part of the brain and/or abnormal air pockets in the sinuses. The seizures I read about they say are initiated by abnormal brain discharge. As for the long duration, I have seizures myself. The seizures last only a short time--seconds or minutes--but the after affects can persist for quit some time. Things like mood changes, motor skill issues, weakness, unclear thoughts. So maybe you could be having short duration seizures and long recovery times? Just a thought...
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yoplait wrote:
About 2 weeks after my fathers death. I was 6Thanks Picasso for the great read. My son has febrile seizures. He was diagnosed at the age of 11 months. There is a history of them on his fathers side of the family. I can only imagine how nerve wracking it is to not have a diagnosis for your condition for so long. Can you tell me how old you were when they first started or when you noticed them?
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Fun fact: Dimma Davidoff created the Mafia party game
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Sorry to hear that man u one of the good guys in this game
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Kush1 wrote:
Thanks man ✌Sorry to hear that man u one of the good guys in this game
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✯ཥ༑ངਸཧཧབ✯ wrote:
Ahh tht makes much more sense to me now. Its inpressive how much of a handle and knowledge you have over your syndrome.Grimm- it was at first, but now its no big. Amongst me and my close friends, my nickname is Nemo. Because I have one good arm. Ha.
Z-remember, I went to the doc originally because of the left/right side unevenness. Which I forgot to mention is the primary 'side effect' of ddms. Before I even asked about the seizures she brought up ddms. Once I told her about those, it was definite.
I had an EEG done when I was younger, and nothing came of it. I had another one done a few months ago, and it showed that the left and right side of my brain stem was uneven. That's what brought me to the doc, we thought it was a tumor
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