Multiple Sclerosis (MS) Support Group
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Hi again,
Trying to see if anyone else has some of these things or I am just suffering them on my own.
My little piggies on both my feet will often just twirl around and dance so pretty. The big one goes up and down in a nice rhythm and the other little guys just dip and sway and even entwine themselves (when they think I am not looking! :-D) My left is worse than right of course because the left is ALWAYS worse than right. But the right does it too just not with as amuch gusto! They do this on their own because I am usually intensely involved in reading a book. I never think of them until I begin to feel the familiar ache under my toes indicating that they have been dancing for quite some time. They will go up and bend down and pull over each other and the baby piggy stretches himself out as far from his family as he can get and does this continually.
Anyone else ever have this? Im tired of these weird things. Irish
Trying to see if anyone else has some of these things or I am just suffering them on my own.
My little piggies on both my feet will often just twirl around and dance so pretty. The big one goes up and down in a nice rhythm and the other little guys just dip and sway and even entwine themselves (when they think I am not looking! :-D) My left is worse than right of course because the left is ALWAYS worse than right. But the right does it too just not with as amuch gusto! They do this on their own because I am usually intensely involved in reading a book. I never think of them until I begin to feel the familiar ache under my toes indicating that they have been dancing for quite some time. They will go up and bend down and pull over each other and the baby piggy stretches himself out as far from his family as he can get and does this continually.
Anyone else ever have this? Im tired of these weird things. Irish
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Usually I get a daily influx of emails on health topics. An article from Dr. Mercola really stood out recently though because it mentioned that fat cells have their own mitochondria. Not only was this the first I'd heard of this, he also mentioned that fat serves a purpose in our metabolism. Another new factoid for me. The bottom line for me was to appreciate that even our fat cells play a...
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I just do not feel well and I really think that it's because I cried yesterday on my way to work about my Aunt who is in the hospital. I don't think that we will have her much longer. She is very frail. Now she needs help eating. So, this is the third time in a year that I felt this way after crying. I think crying releases toxins into my body. I also worked up a sweat at the gym...
Gentle hugs, Linda
Yeah, I bet you guys would LOVE to see this. I should try to get the video done and then put a link here. Or mabye they will just let me put the video on here. I mean it would lighten us all up a bit and be able to look at some of our symptoms as actually kinda "cute and adorable" even if the consequences of "cute and adorable" is pretty painful later on. I talked with my friend who is also my hairdresser and she has lotsa ideas how we could dress up my toes real cute and yet still be able to see the toes moving to the beat! That would be really rad to have some kinda music playing for the princess piggies to dance too also! Well this gives me and her a project and we are both so ADD that a combined project is what we need since we are both major project beginners and almost finish and then just quit! Thats why shes a hairdresser, constant distractions and new stuff. Sometimes I figure thats why I never get hired. But then again at this point maybe I should not be getting hired till I find out my prognosis of whatever problem I do have.
Lorrie, your heel tapping sounds like my jogging in place leg. It litertally pops up and down real fast and can not be stopped. My mom and dad will actually get nervous looking at it and both have tried to stop the movement with their hands and it does not stop. Although I had to tell my mom to cut it out cuz she was starting to hurt me! My own mama! It just freaked her out bad though! Well better run.....Irish.
I already take magnesium and it doesn't seem to do anything for my legs at all, but it is a good stool softener so I continue.
They are jumping as I post this!
You can do the fairy tale of the 10 little princesses who left the castle every night to dance in the garden all night long. Their parents were constantly wondering why their brand new slippers they had just gave them were always worn out the next day. I believe the name of it is "The ten Little Princesses". Then you could dress them up in pretty little scraps of cloth and paint on faces and give them some yarn hair. Then we could let those piggies and princesses just go to town!!! You could record yours and I could record mine. Maybe Daily Strength would like put them together and it could be entertaining and show a humorous side that we try to put forth----a sense of hope for those that are suffering and scared. Also it would be a really good way to show a symptom and explain it and how it can relate to other parts of the body as well.
Yes, my little piggies are doing a hoedown as I am writting this! They even have my ankles involved! Boy they sure do know how to party! Lets go for it girl!!!! Irish
Well if it ever does happen to you it might be the only symptom you will be able to get a kick out of! It bothered me a lot at first. Then I just ignored it for like 2 years. I just figured that it wasnt a big deal and probably everyones toes danced around and they just didnt want to admit it. Well, now I know that it is an actual symptom of MS and although that thought is kinda scary I would much rather have my dancing piggies than some of the other yucky things I have been through. Like the MS hug, THAT was one of the most frightening things that has ever happened to me! It was tooooo weird. Then the pain and the cognitive stuff. I told my husband on Friday night we should get the $10 special from Long John Silvers and then we told the kids about it yesterday (Sunday) and for the life of me I could not remember the name, only that it began with an "S", finally my husband said it and my kids were like, "mom it doesnt begin with an "S" and I defended myself with "yeah, the guys REAL name is Silver and that begins with an "S", so there!" and that stuff happens ALL the time. Plus the headaches, the horrible eye thing, the muscle pains and not being able to do much because I get so tired out. Oh, and the heat....I think that will always be my worst symptom. I live in Central Texas just 30 miles away from Austin and if you know anything about Austin you know that its all about "being outside and naturey, hippy people". So we hike a lot and do other stuff outside. It kills me. It actually feels like it is killing me sometimes. Not to mention our Wal-Mart doesnt believe in air conditioning the store very much so I cant stay in there for 30 minutes without feeling like I am going to die. Well I can tell you if I do get a DX of MS I am going to roll around in their little carts for people. I saw a woman in there one time and I helped her get some stuff and she told me she had MS and that it was just too much for her to walk the whole store.
Anyway, sorry so long. Story of my adult life. I was a super quiet kid and teenager. My mom always says that I stored up 20 years of talking and have yet to get it all out of my system! Take care and I am glad I made you laugh! Laughing is one thing MS can never steal from us and that is such a wonderful gift! Irish
i hate m.s.!!!!!!!!!!
UGGGHHHH!!!!! I am with you on the last statement! I have so many symptoms also and I am freaking that they sound so much like MS. I think it is extremely weird that my optho could find nothing wrong with my eyes cuz he is soooo very thorough. Yet all he told me was I was not tracking so well with my left eye (yeah it hurt BAD when he kept saying "look to your left Tamye, no to the corner of the room" and over and over again!) He also told me that my left eye vision has gotten much worse. I should say so! I could not even read the 2nd big black 3 letters! Last time I was there about 9 months ago I was able to read line 5 so my vision has really gone downhill. I just read something at the MS Society about how your vision slowly will get worse and worse ad you can go blind. Right now my left eye is almost completely closed and my right eye has decided her heroes are "The Dancing Piggies" because it has been trying to move around and take a look-see at everything but what it needs to be looking at! I dont even want to leave the house because people are gonna be staring at me!
I swear if I go through all those annoying tests and months of waiting around for another excaserbation (which really dont seem to long in between, like maybe 5-7 days and then they start hard core again.....Im guessing thats NOT good huh? Just another example of me sitting around doing nothing about my health!
Ames, how long did it take before you were dx'ed? I mean from the moment you went to see the neuro till the time they told you the news? Also did you wait along time to go and see someone about your symptoms? Are diid you go right away? Im 45 and not in the best of health. I have a pretty bad immune system and was actually told I could expect illnesses such as MS, Lupus, RA, . With that EBV being as bad as it was it took a year to recover. Since my family had no inkling about EBV and how it can ravage your life they just expected I should be "business as usual...pull yourself up by your bootstraps
OH NO AMY!!!!!!! I LOOKED AT MY WALLPAPER AND THOUGHT TO MYSELF "HMMMMM I DONT REMEMBER HAVING TWO LITTLE DIAMOND SHAPES TOGETHER LIKE THAT.....THEN I BLINKED MY EYES AND THEY WERENT TWO DIAMOND SHAPES THEY WERE DOUBLE!!!!!! I LOOKED AT THE PICTURE OF A HORSE I HAVE ABOVE MY COMPUTER AND HE HAD A SHADOW RIGHT NEXT TO HIM!!!! IS THIS THE BEGINNING OF DOUBLE VISION????? IT JUST NOW STARTED!!! I AM SQUINTING SO HARD RIGHT NOW I AM GETTING A HEADACHE! {;EASE HEOP!!!! NOW THIS BLUE BOARD THING LOOKS LOPSIDED. WHATR DOES IT MEAN?
Yes it is sooooo frustrating to get stuck on a word. Especially when its such a simple word like "purse" or "table". My family, best friend (especially her...she thinks and talks so fast that she will usually finish my sentence for me even when I know exactly the words I need to say!) and husband are all so used to finding my words that they actually have the ability to figure out what I am trying to say just by my using made up words or saying the "whatchamacallit" or something else like that. Plus my sign language also seems to help them. I really hate it though when this happens in public or when I am talking to school people about my sons.
I do have ADD and when I am on medication for that I have noticed that word finding is not as difficult. It still happens but not as often. The only problem with the meds is that they take a really long time to start working on me and since they are drugs that are legal narcotics with a prescription they do not have refills by law. That is always a problem with me cuz my pdoc is out of town and they have to mail the script to the pharmacy and it sometimes does not get there soon enough and I am out for days. Then its back to getting enough in my system to make it start working again. Which takes weeks. Plus for some reason meds often do not work on me or I can only use them for a short time and they quit working.
As for memory, word finding and FATIGUE they are really great! I have used Provigel (didnt do a thing), Concerta (decent enough but expensive) and Adderall XR (pretty good but takes weeks) I ran out about a month and a half ago and am at the point again where I can hardly speak a whole paragraph without needing help with a word. Luckily I see my pdoc on 2/20 so I will get a new RX. We will see, I guess, if it will work for me again.
Thanks for writing and I am sure glad that your co-workers are so nice about the whole thing. You are very lucky to work with people who care so much for you. But then again I would say they are lucky to have someone like you to work with. You are obviously a good humored and well natured person. Good for you! Take care and know that you are in my prayers! Irish
I do work with great people. I'm glad it sounds like you have some folks around you to help with words too. I wish you luck getting all your meds straight and timely. Thanks for your prayers! I will also add you to mine. Take care!