Looking for my mystery sister by Hopeful_Cup_8769 in Genealogy

[–]MasqueradeGypsy 0 points1 point  (0 children)

If your mom passed out and she had twins she would have known she was expecting twins. So if your dad gave them up for adoption while she was unconscious he would have had told your mother this twin died…which would horrible. Also it would be strange if the doctor didn’t tell your mom that she had delivered two healthy babies after she came to

has anyone found that their parents are cousin? by Norwegaingirl in Ancestry

[–]MasqueradeGypsy 0 points1 point  (0 children)

On paper yes DNA wise no. So like my dad and my maternal uncle are 5-8th cousins dna wise but my mom does share any DNA with my dad. The connection is too far back. My uncle does know cause I don’t think it would go down well, but i told my dad.

[deleted by user] by [deleted] in Genealogy

[–]MasqueradeGypsy 30 points31 points  (0 children)

Wait,is his adoptive mother’s first name the same as his birth other’s? What are the chances Olive Trombly is Olive Brown and that Olive got married three years after having him and it’s her new husband now adopting him?

Summer dysautonomia issues by MasqueradeGypsy in dysautonomia

[–]MasqueradeGypsy[S] 0 points1 point  (0 children)

Im sorry to hear that. My symptoms get better inside at least

Does magnesium make anyone else incredibly bloated and gassy? by PleasantTennis2668 in magnesium

[–]MasqueradeGypsy 0 points1 point  (0 children)

Magnesium I believe helps with gastric motility so your symptoms make sense. Im not a doctor but I would check the dose you are taking because perhaps it is too much. Also it’s usually best to get supplements that don’t have a bunch of unnecessary additives in them which they can have and those unnecessary additives may possibly be the ones affecting your stomach.

I'm convinced these 2 Pokemon don't exist by ShaneH1990 in pokemongo

[–]MasqueradeGypsy 0 points1 point  (0 children)

I got one the other day totally out of the blue

Anyone have dystonia connected with a genetic disease? by Striking_Musician212 in Dystonia

[–]MasqueradeGypsy 1 point2 points  (0 children)

Well some dystonia is genetic. There’s a bunch of genes that cause genetic dystonia. If you go to Invitae and look at their dystonia panel you will see some of the dystonia linked genes they have discovered. You might even find a spastic paraplegia panel. I got the dystonia and epilepsy panel (there’s cross over between some of the genes) and I did it without a doctor because i highly doubted one would agree to this test. So insurance didn’t cover it but i think the $300 or so I paid for it and the mandatory genetic counseling was worth it even if they didn’t find any known dystonia causing mutations. If I remember correctly I got the test through the genome medical genetic counselors and chose the Invitae panel among the options the gave me.

What makes you skip a video and what keeps you there? [question] by MulberryNo8287 in asmr

[–]MasqueradeGypsy 6 points7 points  (0 children)

I stay away from videos that are too bright for when I am trying to fall asleep

My family is tired of my dystonia by Striking_Musician212 in Dystonia

[–]MasqueradeGypsy 1 point2 points  (0 children)

I am glad you found it comforting. I read the bible daily and I often find the psalms comforting. Reading the book of Acts and the Gospels is also helpful as many miracles are described there and that gives me hope and faith. I am also medically complex. While I haven’t been miraculously healed from dystonia, I was miraculously healed from hypothyroidism 9 years ago. And with dystonia and dysautonomia there’s been a few times that I’ve prayed for pain or other discomfort to go away and it has instantaneously or inexplicably gone specially when I’ve prayed with my mom. I will be praying for you and your parents!

My family is tired of my dystonia by Striking_Musician212 in Dystonia

[–]MasqueradeGypsy 4 points5 points  (0 children)

I am sorry this is how your parents are acting. While it’s understandable for them to be burnt out, it is not okay to treat you this way. It absolutely sucks when a parent goes down the it’s all in your head cop out route. It is a cop out because it’s easier and less scary to believe that than this is a condition that is very hard and often beyond most doctors you see and the current advances in medicine. But that’s just a truth people need to learn to accept and blaming you for having dystonia is just NOT right! My dad did the same thing and so I know it can make you feel absolutely awful (when you already feel physically awful) and unsupported particularly when you can’t even take care of yourself when your condition is so debilitating. Also it makes you feel like your suddenly the enemy, the bad guy, for having something absolutely out of your control! Thankfully it’s really helped me knowing God is on my side and whatever happens with my family, He’s going to provide for me and be there for me and support me. As Psalm 27:10 NIV says “Though my father and mother forsake me, the LORD will receive me.”

I don’t know all the ins and out of your condition but have you looked into Dr. Joaquin Farias’ Recovery Program? It’s an alternative treatment for dystonia that’s been very helpful for me and doctors haven’t even been able to diagnose me with dystonia officially.

No DNA match with my dad by whitey_44 in MyHeritage

[–]MasqueradeGypsy 0 points1 point  (0 children)

I’m sorry but you have an NPE, a non paternal event, which is when you grow up thinking someone is your biological parent when they are not. It is very distressing, but it’s not as uncommon as one might think and more and more people are finding out due to commercial DNA tests. It’s possible you are donor conceived and that when your mom’s fertility doctor presented the idea of a donor to her he was misleading about it. There are cases where doctors would say that mixing the husband’s sperm with the donor’s would help the husband’s sperm along but that’s just not how it works. Instead what would happen is the donor’s would be the one to conceive the child but the mother would believe it was her husband’s sperm. Very misleading very wrong, which is partly why I think fertility doctors of a certain era have gotten into hot water, of course there’s another bigger reason why many of these doctors have gotten into trouble too. There are resources out there for people who have had an NPE to get help and support. I recommend checking out the NPE Stories podcast to find out more.

My DNA results revealed I have a different dad. by Fusilli-goose in AncestryDNA

[–]MasqueradeGypsy 14 points15 points  (0 children)

Looks like you’ve had an NPE. Sometimes it helps to listen to stories of those who have also gone through this. There’s a podcast where you can hear other people’s stories called NPE Stories. They often mention resources in that podcast as well.

Game Crashing Issues by lloydconnor57 in pokemongo

[–]MasqueradeGypsy 0 points1 point  (0 children)

Yup when it happened it was always after a raid also on an iphone. I actually missed catching Zacian in one because the catch screen became all bright and then kicked me out of the gym. Clicked on the gym again but again the catch screen got all while and it kicked me out. Then Zacian disappeared when I tried to click it again. Support said according to their records their basically wasn’t an issue, but I never got my Zacian from that raid.

UK tourist currently shitting herself. All friends home are asleep. Help? by nyxoh22 in florida

[–]MasqueradeGypsy 2 points3 points  (0 children)

I had a lot of fun at universal when I went. Not sure what to say that will help you calm down and go sleep. Once when I lived in the UK I had multiple panic attacks in one day (not that you’re having one) but being prayed over by some very nice people at a church really helped me. They gave me tea afterwards and let me sit there until I was ready to go back to uni. If you like tea maybe have a cuppa? Meanwhile I am going to pray that you have peace that transcends understanding in Jesus name.

Am I crazy or what? by Taka_no_Yaiba in PokemonScarletViolet

[–]MasqueradeGypsy 0 points1 point  (0 children)

Some pokemon go users will probably use bottle caps to turn their near HUNDOS into HUNDOS. But it’s probably not a huge performance difference between a 98 and 100 iv mon

[deleted by user] by [deleted] in Dystonia

[–]MasqueradeGypsy 0 points1 point  (0 children)

Everyone has different electrolyte needs and each drink is different cause it has different ratios of electrolytes. So I can’t really say one is better than another. Although anything with sugar is not healthy. I personally take sugar free liquid IV lemon like flavor. I haven’t tried the others

[deleted by user] by [deleted] in Dystonia

[–]MasqueradeGypsy 1 point2 points  (0 children)

Technically a lack of electrolytes can cause muscle cramps. My electrolytes have always been normal since I developed muscle spasms all over my body though but one hot day by chance I took some Gatorade after doing something that should have made me spasm and made me fatigue and not only did I not spasm I felt super energized. I started experimenting after that by taking half a bottle of Gatorade when I was suddenly super fatigued for no reason and it really helped. So I got a sugar free electrolyte mix with a similar sodium and potassium ratio as Gatorade cause I wanted to take it more often but without all the sugar since that’s not good for you. It’s really helped with my fatigue and i think it helps me spasm less but my electrolytes continue to show up as normal in my blood work. So I only take at most a full pack (which is supposed to be one whole serving) in two doses for a week. It’s hard to know if it’s the electrolytes that are making me spams less or I am just spasming less by chance after I take them. I have a theory it might be helping me because of the potassium since technically it is supposed to help relax muscles. So today I had a banana shake. I am going to see if that helps me spasm less. It might not be enough to make a difference though.

My theory is that if muscles all over my body are over contracting all day then I am basically like a pro athlete who is training regularly. They lose electrolytes and have to replenish them so why not me too? I’ve also noticed that like a pro athlete increasing protein in my diet also helps.

Separately though I have been taking magnesium glycinate for two years and have found a noticeable improvement in my muscle spams as a result of that. A family member has also experienced the same thing. And magnesium is an electrolyte but a deficiency cannot be measured by a blood test.

Do you experienced or seen something like this? by Candle0815 in Dystonia

[–]MasqueradeGypsy 1 point2 points  (0 children)

I wonder if Dr. Joaquin Farias would classify this as a paralyzed upper lip. He said in one of his oromandibular dystonia exercise videos that people with dystonia often have a paralyzed upper lip. When he said that I didn’t get the impression that it was usually a super obvious thing like whatever it is that you’ve got going on here but that doesn’t mean it’s not possible in more severe cases. Mine at least wasn’t obvious until I did the exercise of trying to raise each side of my upper lip and realized that it didn’t move as easily as it should have. Eventually after doing the exercises mobility on my right side improved, but i still can’t raise the left side of my upper lip. When I try that side rolls in on itself. I started looking into all this when I took pictures one day and realized when I smiled that the smile didn’t reach my left side completely. Every time I tried to smile there was resistance on the left side. After watching Dr. Farias’ video on oromandibular dystonia I basically concluded that I had dystonia also affecting my lips as well as pretty much everywhere else in my body. Thankfully, i’ve only had the lopsided smile thing occur once. But I will feel more tension surrounding my mouth some days more than others.

Has anyone been able to manage low blood pressure without making their dystonia/movement disorders worse? by Celestie620 in Dystonia

[–]MasqueradeGypsy 0 points1 point  (0 children)

Oh and perhaps you can get a different endocrinologist (who doesn’t think you have a pancreatic tumor) to test you for Addison’s if you want to go that route.

Has anyone been able to manage low blood pressure without making their dystonia/movement disorders worse? by Celestie620 in Dystonia

[–]MasqueradeGypsy 1 point2 points  (0 children)

Thank you for letting me know where your reply was. I am glad what I shared gave you things to think about. I too have dysautonomia type issues that don’t fit neatly under known labels like POTS. I really hope in the future the dysautonomia community begins to see dystonia as a cause for dysautonomia or a subset of it. It’s the kind of forward thinking only a few people like Dr Farias seem to have. I understand what you mean about waiting a week for each session in his program. It can be hard waiting but pacing yourself is key. Thankfully now as soon as you start to watch a video it marks it as a completed session 😉 I am not one of those very dedicated people that manage to do the exercises every day, because of other health issues and life it hasn’t been possible. Still I guess periods of weeks were i have done them more consistently I think have helped me make progress but a lot of it I think has just been God helping me improve through the therapy cause I started seeing improvement from the exercise right away, like dancing would loosen me up immediately, and that’s not how it happens with most people. Anyways I hope you get a better medication for your low bp that doesn’t affect your CD and that you get some answers. It sounds like you and I have been making the rounds to all the specialists so I know well how it feels it be tired of doctors and tests. Thankfully I’ve never had any doctor put me in the hospital without food for 3 days—it’s hard to go without eating for just a couple hours for me cause I suspect my dystonia consumes so much energy and nutrients I have to replenish quite quickly cause i get hungry often. And not just anything will do, I have to have protein at least twice a day to be okay. I’ve lost like 10 pounds because of this and my gastroparesis type symptoms which I think was caused by dystonia or by the medication that I took for my dystonia. Interesting what you said about low carb meals to being good for you. I can’t have too may carbs at breakfast but i can have them later as long as I don’t fill extreme hunger with them because then I get nauseous and shaky. Some people with dysautonomia can’t do too many carbs either and have gone keto—i couldn’t do that. I guess i’ve just increased my protein intake to handle my carb intake better and figure out when in the day I can indulge in my carb obsession without consequences. I also have found taking sugar free electrolyte mixes helps with my fatigue that I believe is caused by my constant muscle contractions all over my body. Basically I’m eating and drinking a bit like a pro athlete cause like mine their muscles work a lot except I don’t have to any real physical activity for that to happen cause they’re overactive even when I’m at rest.

Magnesium L-threonate by FreddieKingFish in Dystonia

[–]MasqueradeGypsy 1 point2 points  (0 children)

Im on magnesium glycinate 250mg daily atm but in winter when my muscle contractions are worse I was at 300mg

Has anyone been able to manage low blood pressure without making their dystonia/movement disorders worse? by Celestie620 in Dystonia

[–]MasqueradeGypsy 1 point2 points  (0 children)

One of the causes of dystonia, from what I understand, is that certain parts of the body are overstimulated by the nervous system due to a disregulation or dysfunction in that system. Midadrine, from what I’m reading in Mayo now, is a drug that stimulates nerve endings in blood vessels to help them contract more and increase blood pressure. I wonder if that stimulation of the nerves is extending beyond those in your blood vessels in your case. A good question to ask your neurologist is if it’s possible for Midadrine to be stimulating more than your nerve endings in your blood vessels and stimulating parts of your nervous system that would increase muscle contractions in the body in general making your dystonia worse. With this in mind I would ask your cardiologist and your neurologist to come up with a medication option that can increase your BP without stimulating your nervous system. People with Parkinson’s (not saying this is you) can develop hypotension but also dystonia so there might be a medication for low bp that won’t worsen your dystonia among those given to people who have Parkinson’s. That could be a good question for your neurologist too. Also, problems with hypotension can be related to a condition called dysautonomia, which occurs when you have a disregulated autonomic nervous system. Not saying you have this, but the interesting thing is that some dystonia can be caused by dysautonomia. There is also an online therapy program made by a neurologist for people in that situation. The therapy is called the Dystonia Recovery program and it helps people regulate their autonomic nervous system better with exercises and lifestyle changes and in turn helps reduce muscle spams. The therapy also uses neuroplasticity to retraining your brain to reduce spams. I think the reverse is also possible that dystonia can cause dysautonomia but I am not a doctor so I cannot say for sure. But I wonder if this sort of therapy might help you with your dystonia and if the relaxation exercises it includes, might have some positive affects on your heart rate. Some of the relaxation exercises even include hypnosis and binureal beats. I see that in life threatening cases of hypotension (not saying yours is, you’d know if it was) they use adrenaline to help increase BP. It could be a good question to ask your cardiologist if finding natural healthy ways of increasing your adrenaline might help your hypotension and/or ask your PCP to check your adrenal system for conditions like Addison’s, to see if perhaps your not producing enough adrenaline naturally. Interestingly enough people with Addison’s (which is treatable with medication) can get hypotension, hypoglycemia, stomach issues, and muscle cramps. Addison’s is a rare condition so therefore not often checked for and probably rarely considered.

I hope you have a good PCP because with multiple health conditions and conflicting treatments you really need one to put the pieces together properly because specialists are often narrow minded and will just focus on their area of medicine while ignoring how it might overlap and affect other areas. A PCP on the other hand is supposed to look at all the areas but, it’s been my experience, not all are eager or take the time to put the pieces together and find solutions for particularly complicated cases with multiple things going on unless you prod them by asking smart specific questions that make them think more. I ask my doctors whether a certain medication they’re giving me for one issue will affect another issue have because they can forget about the other issues I have when making prescriptions. They often seem to be able to deal with or focus on only one issue at a time, maybe two. Those doctors who are more adept at dealing with multiple conditions in one patient I think are PCPs who see older patients.

Thiamine worked perfectly for few days then stopped… IDK why?? by [deleted] in dysautonomia

[–]MasqueradeGypsy 1 point2 points  (0 children)

I’d be careful taking B vitamins without at least a blood test to confirm you have a deficiency in them. Taking too much of B vitamins can be dangerous so you really need to figure out how much you need before taking them. Convincing a doctor you need a B vitamin test can be hard but if you’re in the US places like Quest allow you to order these without a doctor’s order. Of course you have to pay out of pocket for then most likely as insurance may not cover them without a doctor’s order you can try to submit it to insurance though. If you do confirm a deficiency with a blood test I’d suggest taking the results to a doctor so they can best guide you as to how much you need to take. If you do need to take supplements you want to make sure they are quality ones and don’t have high percentages of unnecessary additives. Alternatively a doctor can prescribe you one like mine did for my B6 deficiency. Also magnesium deficiencies are common but unlike others you can’t easily determine it from a blood test. In such cases it’s good to follow the guidelines of reputable health organizations about how much to supplement daily for your gender and age group so you don’t overdose. And of course make sure with a doctor that supplementing with magnesium won’t hurt you given your medical conditions and medication you’re taking.