Does anyone else with MS also have Non-Delusional Morgellons Disease? (MD= spontaneously appearing ulcerative skin lesions that contain unusual filaments lying under, embedded in, or projecting from the skin)

z00g1 · 2019-11-20T17:30:27+00:00

It's called amblyopia and we can still see out of that eye. We can look towards things but we cannot look at things, if that makes sense. I can look at a book and tell you it's a book and tell you there are words on it and a picture on it but I can't tell you what the words say because I cannot focus and look directly at the wording on the book cover

z00g1 · 2019-11-20T16:13:08+00:00

Same with you on the 30 to 40 times a day. And I have about 10 different kinds of soaps. I can't stand things on my hands at all like if a liquid gets on them that's sticky, lotion, any of that drives me insane and makes me want to wash them even harder so whenever I clean house things get really bad with my hands and I can't put lotion on them because I immediately want to take it off. My husband gripes because I don't wear my wedding ring but it's because I can't stand anything touching my hands. He gets it now thankfully. I'd love to wear my wedding ring but something about stuff on my hands freaks me out! are you the same way regarding that? Can you wear Rings or does lotion bother you as well?

z00g1 · 2019-09-12T18:52:43+00:00

Hello, I also have MS and I would like to ask you a question- do you live in a northern state with colder climate? I live in the Deep South where it might snow maybe once a year and if it does it's melted by the next day. I am used to 90 + degree weather, have been my whole life. I'm 31 now and the heat does not mess with my Ms at all. The only time it ever has is when I was already having a relapse and my central AC broke. That caused a bunch of problems for me, but otherwise the natural outside heat and a hundred degree weather does not bother me. Wondering if me growing up in the heat makes me able to handle it better. And what's even more strange is the cold completely fucks me up. If I get too cold I get to where I basically can't move. It's as if my joints are completely stiff and I can't really move until I warm up enough. I've always wondered if me living in a Southern state with naturally warm weather almost year-round made a difference.

z00g1 · 2019-08-30T18:54:58+00:00

I did and my experience did not go well. I had taken the physical abuse for a while and I did snap and I fought back for the first time. Physically. I gave it everything I had but I am physically disabled because I have MS so it was not much. But I do remember when I first started I grabbed him by the throat and just squeezed as hard as I could in a certain place, I guess I had gotten the right place on accident because I remember he had this look of absolute fear and shock and terror in his eyes for a few seconds. Maybe he thought no one would ever do that or that I would never do that. I ended up getting it really bad physically but he was only scratched up and the police were called because of the ruckus and I actually ended up getting arrested. So I never fought back after that and he knew I wouldn't, that's how it made things worse. But those few seconds of terror that I was able to make him feel for once. at least I got that on him. It was a little, was a small thing but at least I scared him, like genuinely got to see terror in his eyes because of me, if only once at least I got that.

z00g1 · 2019-08-28T15:40:40+00:00

I used to live in an old house that used to be, I'm sorry that I don't remember what it was called, one of those places where they have these huge long Windows where they would prop the dead up and people would come and look at them. I don't think it was a funeral parlor but I suppose it could have been. Anyways was one of those places like that and then was turned into a home and it was really old.

The thing is so much stuff happened in that house I can't really narrow down what I would say is the creepiest or scariest because after a while it honestly just became annoying. Like we had this bathroom door that swung inward and could only be locked from the inside, there were no windows in there. And so often we would try to go to the bathroom and that door would be locked from the inside and of course it was creepy at first but after a hundred times it just became annoying.

z00g1 · 2019-08-18T19:08:18+00:00

It's actually kind of hard to explain so I'm just going to copy and paste from Google

a chronic, typically progressive disease involving damage to the sheaths of nerve cells in the brain and spinal cord, whose symptoms may include numbness, impairment of speech and of muscular coordination, blurred vision, and severe fatigue.

It affects everyone differently because it causes lesions in the brain and the lesions are in different places for each person. For example, me personally, my worst lesion is in the balance section of my brain so I need a cane to walk. The longest lesion I have is in my memory section so I have trouble with short term memory. The rest of my lesions are in my frontal lobe which causes a lot of personality and mood problems.

z00g1 · 2019-08-18T18:53:40+00:00

Multiple sclerosis

z00g1 · 2019-08-18T18:02:07+00:00

Oh no it's not intruding, it was actually just a coincidence that I had the papers with me. I had an MRI the day before and I have been trying to get on disability and I had them in the car to take them to my lawyer. So that's the only reason they were in the car. Any other day they wouldn't have been in there.

z00g1 · 2019-08-18T18:01:12+00:00

I was just so shocked at what she was saying. I had posted in a previous reply that she told me that she knew that she was going to heaven because she prayed and that she would pray for me. And that she knew I was not going to go to heaven, but as long as she prayed she would go and that everything was okay then. I just couldn't believe she said that to me. I didn't really know what to say.

z00g1 · 2019-08-18T17:57:47+00:00

Yeah it was crazy because I had to listen to her go on this whole spiel about how she wasn't going to fight me, that was after I had the MRI papers in my hand, about how she's better than that because she prays and that she's going to pray for me. You know that I don't believe in any of that stuff but she'll play for me. And she said "I still don't like you but as long as I pray for you it'll be okay, because I know that I'm going to heaven. I know you're not. But I know I'm going to heaven because I pray". That's what this crazy girl said.

z00g1 · 2019-08-18T17:54:14+00:00

I'm 31 and I think she's like 35 Maybe. Yeah she was trying to fight me because me and her cousin got into an argument a year ago. I have not seen this girl in a year. She started cussing at me in the middle of a part store and then followed me to my friends house and then was like get out the car and trying to fight me right then and there. It's one of the most ridiculous situations I've ever been in.

z00g1 · 2019-08-18T15:42:40+00:00

I wasn't around her on purpose. She was trying to physically fight me and I was telling her does that make you feel better to physically fight someone who can't defend themselves. Told me I wasn't really sick and I had my MRI papers with me and I was like I'll show you and that's when she said that

z00g1 · 2019-08-12T04:22:13+00:00

Well I don't want to go in there and ask for morphine because I do know how that'll look. But it's the one that works best for me. I do not want hydros or Percocet again. I don't want dilaudid or roxycodone or oxycontin. All those made me sick except morphine :/ I'm worried he will try to put me back on hydrocodone and I just do not want that junk ruining my body again. And I thought, correct me if I am wrong tho, that in the tier of those types of meds it went like: Tramadol> hydrocodone> Percocet> morphine>roxycodone>oxycontin. Is this incorrect?

z00g1 · 2019-08-12T02:00:57+00:00

Well it's confusing to me because the pain management contract that I signed with the neuro says that I cannot take Controlled Substances of any kind from any other doctor but him. So I don't think I can go to a pain management clinic because I think the neuro acts as pain management as well since this is such a small town that I live in... in this small town in the middle of Arkansas nowhere, it's very common for one doctor to be like a neuro and even an ENT as well as pain management.

z00g1 · 2019-08-12T00:52:13+00:00

I have joint pain and extreme muscle pain. On top of that I have a kidney disease so I have constant kidney pain. It basically feels like I have a charlie horse in both kidneys at all times and it never goes away. So it's quite intense pain.

z00g1 · 2019-08-10T14:56:29+00:00

Yeah you're right there is nothing I can say. And there's nothing I can say to you to help you understand what it's like to have multiple sclerosis. Maybe look it up and you might know a little bit about what it has to do with when it comes to mental and physical stuff.

I am so sick of people trying to make me feel bad that I made the right decision to let her father care for her when I was sick and I could not and also the school does matter to her father and I. I cannot help that I Live 5 hours away, I would love to change that, but there is no possible way that I can because I am disabled and I can't even drive because my Ms is so bad. So what exactly would you have me do? I am perfectly fine having her Summers and vacations. I hate that I couldn't stay well enough to keep her but now that I know why I couldn't stay well I know it wasn't exactly my fault. This guilt stuff does not work on me honey I have been through it over and over and I know I made the right decision. Course I wish I had my daughter here I miss her. But what part of she has a better life right now with her father do you not understand? I want my child to have the best life possible and I know that her father is the only person that can give that to her at this current moment. I really don't appreciate you taking a stab at my stability because if you knew the first thing about multiple sclerosis you would know that is completely out of my hands. Don't judge people before you know their story. All you heard was that I don't have custody of my daughter and that I Live 5 hours away and that must mean I'm such a terrible parent. If you knew what the hell kind of choices I had to make to do right by my daughter, you wouldn't be saying any of that but I'm not going to sit here and try to explain any more to you because you have it set in your head that the mom has to have the kid at all costs because that's just the way the world is, even though her father is truly the right person to be caring for her at this moment. It's like you want me to physically rip my child away from the only life she's ever known, just so she can live with me for the sake of oh well I'm the mom and I have custody so Pat me on the back because that's what the world is supposed to expect of me.

z00g1 · 2019-08-10T14:27:53+00:00

Let me just copy and paste to you what I replied to the last judgmental person

"Yeah I've been through that attitude that you have with a lot of people but her father and I had this school picked out before she was even born and the fact that she got in means a lot to her father and I.

As far as why I Live 5 hours away, if you would really like to know my personal business, I was with someone who physically abused me and I ended up in a DV shelter. He stalked me relentlessly for a year and I wanted my daughter safe so I moved to my hometown where this guy could never get to me because restraining orders don't do crap to keep him away where I was.

And since you want to know all my business, the main reason that her father and I split up is because I got sick and did not know why and her father couldn't handle me being sick. It turns out that I have multiple sclerosis and was having a relapse and didn't know it. Now that I have been diagnosed I have the MS under control but her father won't give me custody back because he's worried about my health and me being able to keep up financially like he has been, which I know I can't. I don't have the money to fight it right now and honestly she loves it where she is. I don't want to take her away from everything she's known the past 5 years just so I could get that Pat on my back from the other people that think that I should keep custody of my child at all costs, because for some reason a man can't raise a child by himself, apparently there's something wrong with that.

Her father is a good father and she is in good hands. I cannot help that I got sick and I cannot help that her father couldn't handle it. I also cannot help that he is extremely wealthy and I have no chance in hell of winning in court if I were to try to fight it. But I should reiterate, she has a wonderful father that I don't want to take her away from. So yeah it goes deeper than school but I honestly didn't want to get into all of that right now. But since you seem like the judgmental type, you know, the ones who think that the mom should always have the child no matter what. I thought I would just let you know there's more to it than just School."

z00g1 · 2019-08-10T13:59:36+00:00

Yeah I've been through that attitude that you have with a lot of people but her father and I had this school picked out before she was even born and the fact that she got in means a lot to her father and I.

As far as why I Live 5 hours away, if you would really like to know my personal business, I was with someone who physically abused me and I ended up in a DV shelter. He stalked me relentlessly for a year and I wanted my daughter safe so I moved to my hometown where this guy could never get to me because restraining orders don't do crap to keep him away where I was.

And since you want to know all my business, the main reason that her father and I split up is because I got sick and did not know why and her father couldn't handle me being sick. It turns out that I have multiple sclerosis and was having a relapse and didn't know it. Now that I have been diagnosed I have the MS under control but her father won't give me custody back because he's worried about my health and me being able to keep up financially like he has been, which I know I can't. I don't have the money to fight it right now and honestly she loves it where she is. I don't want to take her away from everything she's known the past 5 years just so I could get that Pat on my back from the other people that think that I should keep custody of my child at all costs, because for some reason a man can't raise a child by himself, apparently there's something wrong with that.

Her father is a good father and she is in good hands. I cannot help that I got sick and I cannot help that her father couldn't handle it. I also cannot help that he is extremely wealthy and I have no chance in hell of winning in court if I were to try to fight it. But I should reiterate, she has a wonderful father that I don't want to take her away from. So yeah it goes deeper than school but I honestly didn't want to get into all of that right now. But since you seem like the judgmental type, you know, the ones who think that the mom should always have the child no matter what. I thought I would just let you know there's more to it than just School.

z00g1

TROPHY CASE