Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
Hi all,
As some of you may know I will be getting my MRI's on this Tuesday. I have been reading a lot about MS and most importantly how to be the "BOSS" when it comes to managing ones healthcare team. I have never been very gutsy when it comes to doctors. I get really really mad....but usually in the relative safety of my car in the parking lot. I am trying hard to become more adept at taking care of myself since it seems I do not have much support from others to help me....(except you guys!!! :-)...)
I have two questions that I would like to ask. The first is about spasticity. I have been having lots of trouble with my left leg and thigh for years now. Recently though (like about the last week or so) I have noticed that my right calf seems to be in some sorta spasm. Its like that right now as I am typing this. It feels real tight like it would feel if I were running and my muscle was in full use. And gosh darnit it HURTS!!!! I instinctively know that if I could find an ACE bandage I could wrap it up tight and it would hurt less but unfortunately I cant find one of the ten million I have bought over the past two years!! So the question: Does this sound like the "experience" of spasticity? I am limping because of it and it hurts to move it. Sometimes it actually does spasm and I can see it.
Sorry that was a reallly long paragraph....8-:} (me blushing!). Next question: for those of you who have experienced diplopia, otherwise known as double vision. I was just watching the new Taylor Swift video called "Safe and Sound" and she suddenly became two Taylor Swift's walking in this gloomy mist filled forest. It happened again with her dad and mom (I guess they were supposed to be her parents). But these were just quick instances. This happened this morning when I was looking at the top of my dog's head. It was suddenly like there was asecond shadow head above hers. 2 weeks ago it happened but lasted about 20 minutes kinda coming and going.
So basically I have been having double vision but it has just been when I have been tired and also they last just a short time. Of course my blepharospasms that last like 5 hours sometimes now used to last only a few minutes as well...years ago. Could this mean the beginning of lifelong issues with double vision? I asked my doc if a normal person would see double vision if they were really tired. He said no that would not happen, not even if they were drunk. Oh yeah, I found this book from 2007 where I had written down a lot of symptoms I was suffering at the time. Pretty funny (LOL....HAHA....HEHE) that the same exact symptoms I have today I was having then.
Geez, I really must like to "pretend and makeup" yucky symptoms and live a totally trashed life filled with nothing but pain, uncertainty and constant sleep. I know it must be so fulfilling to not even be able to work and provide nice things for my family. I really do like to watch us just scrap by and have to eat frozen burritos and butter noodles for dinner. Well, I am not talking to my mom until she apologizes completely for telling me, "Yes, I think you do deliberately make up symptoms so you can get pity from others". I guess she completely forgot my childhood and teen and early adult years where I NEVER went to the doctors and BRAGGED about how terrific my immune system was.
Sorry, long paragraphs....THEY will be the death of me before anything else!!!! %'/ ... (thats me rolling around in this blue box laughing my onion off!!!) Love you guys! Maybe my sense of humor will return by next week when I get this diagnosis business over. So on edge right now. Thanks for being here. I really do need you all and appreciate your never ending support. Like I said before I can only hope that I will be able to do the same for you......Irish
As some of you may know I will be getting my MRI's on this Tuesday. I have been reading a lot about MS and most importantly how to be the "BOSS" when it comes to managing ones healthcare team. I have never been very gutsy when it comes to doctors. I get really really mad....but usually in the relative safety of my car in the parking lot. I am trying hard to become more adept at taking care of myself since it seems I do not have much support from others to help me....(except you guys!!! :-)...)
I have two questions that I would like to ask. The first is about spasticity. I have been having lots of trouble with my left leg and thigh for years now. Recently though (like about the last week or so) I have noticed that my right calf seems to be in some sorta spasm. Its like that right now as I am typing this. It feels real tight like it would feel if I were running and my muscle was in full use. And gosh darnit it HURTS!!!! I instinctively know that if I could find an ACE bandage I could wrap it up tight and it would hurt less but unfortunately I cant find one of the ten million I have bought over the past two years!! So the question: Does this sound like the "experience" of spasticity? I am limping because of it and it hurts to move it. Sometimes it actually does spasm and I can see it.
Sorry that was a reallly long paragraph....8-:} (me blushing!). Next question: for those of you who have experienced diplopia, otherwise known as double vision. I was just watching the new Taylor Swift video called "Safe and Sound" and she suddenly became two Taylor Swift's walking in this gloomy mist filled forest. It happened again with her dad and mom (I guess they were supposed to be her parents). But these were just quick instances. This happened this morning when I was looking at the top of my dog's head. It was suddenly like there was asecond shadow head above hers. 2 weeks ago it happened but lasted about 20 minutes kinda coming and going.
So basically I have been having double vision but it has just been when I have been tired and also they last just a short time. Of course my blepharospasms that last like 5 hours sometimes now used to last only a few minutes as well...years ago. Could this mean the beginning of lifelong issues with double vision? I asked my doc if a normal person would see double vision if they were really tired. He said no that would not happen, not even if they were drunk. Oh yeah, I found this book from 2007 where I had written down a lot of symptoms I was suffering at the time. Pretty funny (LOL....HAHA....HEHE) that the same exact symptoms I have today I was having then.
Geez, I really must like to "pretend and makeup" yucky symptoms and live a totally trashed life filled with nothing but pain, uncertainty and constant sleep. I know it must be so fulfilling to not even be able to work and provide nice things for my family. I really do like to watch us just scrap by and have to eat frozen burritos and butter noodles for dinner. Well, I am not talking to my mom until she apologizes completely for telling me, "Yes, I think you do deliberately make up symptoms so you can get pity from others". I guess she completely forgot my childhood and teen and early adult years where I NEVER went to the doctors and BRAGGED about how terrific my immune system was.
Sorry, long paragraphs....THEY will be the death of me before anything else!!!! %'/ ... (thats me rolling around in this blue box laughing my onion off!!!) Love you guys! Maybe my sense of humor will return by next week when I get this diagnosis business over. So on edge right now. Thanks for being here. I really do need you all and appreciate your never ending support. Like I said before I can only hope that I will be able to do the same for you......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...
The exercise that Alma mentioned does help. I make it a point to stretch before getting out of the bed in the morning and before getting up if I've been sitting for awhile.
The double vision I've had off and on for years, but always thought it was due to eye surgery many years ago.
((((hugs))))
Lisa
I'm with Alma on the exercise. Stretching is what does it for me and when I went through physical therapy, I was shown how to stretch the calves to keep them from cramping up like charlie horses. That can be excrutiatingly painful. I did some research and learned that most of us aree deficient in magnesium and without it, the muscles don't relax after contracting. Calcium and magnesium work together in synergy. Calcium lets the muscles contract but we need magnesium to let them relax again.
I've not had any of the vision problems that can be associated with MS your symptoms are your symptoms and you are so right that one day you will be the recipient of many an apology for anyone thinking otherwise.
I"m sure you're going to get a lot of great feedback on here. Good luck with your upcoming appointment and have your plan ready ~ write yourself an outline and take it with you so you don't forget anything. Whenever I'm in a doctor's office, I can get sidetracked real quickly if I don't have some points written down. It's also a good thing to take a few notes when any advice is given. I've also taken a friend with me because two sets of ears are always better than one.
Best of luck.
Keep your head up though!
D
Alma***I am going to start doing these types of exercise you talk about. My only problem is that sometimes I can not point and flex my foot because it will not stay still and keeps going back to the original position. But I will hold it as long as I can, maybe after awhile it will get stronger! I take Gabapentin which is a substitute (not a generic) for Lyrica and I thought it was supposed to be similar to Neurontin. It seems like sometimes it helps and sometimes it doesn't. ~~sigh~~ pain is so old to me at this point. More than 5 years of it. I am SICK (literally) to death of it!! Thanks again! :-)
Lisa***What you describe is EXACTLY what I am talking about!!! You nailed it my friend! I will use your description for my doc! As for the exercise, I will also do it before bed because it seems like my legs want to move around a lot in bed and maybe this will help them to be still. Also I have instinctively made up an exercise that seems to help with my thighs (they ALWAYS hurt the worst) where I will deliberately stretch them out as hard as I can...till it is painful and then completely relax them. I do this several times. I have tried to do it with my arches on my feet but it doesnt work there.>>>>>BTW I talked with my doc about double vision and he said that no one can have double vision unless it is from a medical issue. He said you cant make your eyes go "all funny" or be super tired or even be drunk. He said if you have double vision then the tiredness or drunk will make it worse but it does not make it happen. Thank you!! :-) ..... Tamye
Lorrie!!!! Hello my friend! Well I am taking your advice as well. I started on the Magnesium tonight. As you can see by the time on this post it does not help me sleep like it does my hairdresser but then I have a really hard time of sleeping at night. Always have. Since I was 10 and went through puberty.....~~sigh~~what us poor girls have to go through in the name of becoming "women".....I will get the calcium tomorrow. Ireally need it because of what you have told me and also because of bone density issues. My mom discovered at the age of 52 that she already had Osteoporosis and started taking those expensive once a month pills. Well she is now 4'10" and she used to be 4'11" and she is about to be 65. So considering that is 13 years I would say she is doing pretty good. We are both very small boned small people (I am 5'2"....tallest female in my family....YEAHHHH....WOOOHOOO!!!) so I know I will probably end up a real munchkin if I dont start taking better care right now. Thanks for the great advice and the reminder!! .... Tamye
Hi D!!!***D is what I call my husband, David, when I am in a hurry or I am leaving a note!! I like it! You are sooooo right about having an opthalmologist. I already have one who is the greatest thing in the whole world. He is so much a bookworm just like me but as rich as he is he has still not converted to Kindle. He keeps saying how much he likes the feel of a book in his hands. I keep trying to get him to see the logic of how he can STILL read a "real" book and a Kindle book. Both at the same time if he wants. I think I am beginning to win him over. It has taken me 2 years and about 5 visits but he is coming around. I will be seeing him this week due to another chorazion I have on my inner left eyelid (mine are chronic) and I plan to leave him my Kindle for the whole day. Man, I think Amazon should hire me! Anyway, I know that my eye troubles will probally get much worse. I unfortunately am learning how to use the audible books service of the Kindle. Its not bad, but it is harder to put it down when the reader is really good. I also see a time when I probably will not be able to drive anymore. That saddens me because I used to have a phobia about driving on the highways and now I LOVE it!!! I like to say I could drive from coast to coast and back again if I was able to (no responsiblities like husband and children...) Thank you for your insight and suggestions! .... Tamye
I don't understand the whole "prism" thing. Do they interfer with your regular sight through your glasses? I really need bifocals, but even with the "no lines" I have trouble seeing out of them. I look down a lot when I walk because I am so clumsy and I fall a lot....hmmmmm wonder what causes that???.....so the bifocals actually make my clumsiness worse.
However I am at the point where I really need to do something because I have my reading glasses on top of my head all the time and there is such a fine line between needing them and not needing them. Like reading a recipe and then needing to look at the food. If I look close enough the food is fine but if I am far enough away ----like just standing there like a normal person would----I actually have to put my glasses back on. same for eating while looking at the guide on the TV. I have to take my glasses off to see the TV guide but put them back on to look at my food or the actual remote control.
So are the prisms removeable? Just wondering since you mentiioned that you could get a RX for the lenses. My double vision just happens every once in a while. I will talk with my opthalmologist and see what he says I should do. I told him I was not buying any new glasses until they had another trunk sale though. Their glasses are so expensive but when I buy them from Wal-Mart or other places the problem I have with focus is not right. They (other places) just rip open a package with lenses inside and stick them on your frames. I imagine that if one has astigmatism like I do they should be doing something to the lenses rather than just pulling them out of a package and sticking them on. Not impressed. Thanks for the info. So much to consider lately.....Love ya!!! Tamye