I am a newbie on this site and my first post was in response to Carrolmcc inquiry “Does This Sound Familiar”, however, I am a member of two other MS web sites, where I mostly read the message boards and occasionally I post a comment. When I checked back here and saw that over 230 people read my response yet there were no comments added, I’m guessing it is time to post an introduction to myself via my own thread. I would like some input regarding those symptoms which could be called pesky, rather than serious, like feeling as though there is water trickling down their thigh when there is obviously nothing at all on your skin that is “wet”. Each of us has them.
After reading so many articles, books, posts and comments on web sites, and getting first-hand knowledge from people in my M.S. support groups, the main thing I have learned is there is no way you can ever learn all about this MonSter we call Multiple Sclerosis. I am not just referring to the latest research data because that is a given how impossible it is to keep up-to-date with the changes and new medicines on the market, instead, I’m talking about the individual nuances, the bits and pieces of info which our club members disperse as a way to make us feel untied. Because, isn’t it the differences rather than the similarities that ultimately connect us and teach us that each of us have M.S. although we are individuals.
Researchers and doctors don’t walk the path we walk. Our collective stories of triumphs and letdowns are what bond us in this club where we are involuntary members, despite never having submitted our membership agreement papers. We offer sympathy and empathy to each other and it touches my heart at those times when someone, who is in a really bad place, can willingly step outside their fears and symptoms and reach their hand out to someone else who has just joined the message boards or chat rooms with a fresh tale of anguish, that they are feeling is overwhelming to them. Reaching out proves our humanity; it also proves how tough we are inside to fight on a daily basis this MonSter.
My M.S. was not easily diagnosed; it was however made, for me, by the fourth Neurologist, an expert in Alpha-Neurology, that I made an appointment with in Nov., 2002. After the full round of testing (again!!) proved positive for the presence of M.S., he started me on Copaxone in Jan. 2003, exactly the same time a tiny homeless kitten was found in my basement. Even though I did not feel capable to care for this helpless little creature, nevertheless, I named him Zoey and we went through the process side by side. However, I should point out that my symptoms go back to the 1980’s, with tell-tale signs like losing my balance, buttoning my shirts and sweaters crooked (lol), and so many symptoms that came and went, on a weekly basis, making no sense whatsoever.
Carrolmcc mentions the sensation of experiencing attacks, which she calls “nervous system storms” and I could not have said it better myself because I am very familiar with what I call internal lightning ‘storms” or “strikes”. In fact real lightning storms literally mess with my head giving me sharp pains on the top and along the sides of my head, which does not turn into a migraine headache,(that is a whole ‘nother ballpark) in fact most days the pain stops right after the storm passes. My Neuro. Dr. P. says this has to do with the changes in barometric pressure. True, though, there is very little info on the internet about this subject,(there is not a distinction made between muscle spasmsin the back or legs and NERVE spasms through-out the entire body) in fact, there is far more about the psychological effects of thunderstorms than there is about the physical reactions, but trust me, I did read a few posts where other M.S.er’s admitted they are very sensitive to atmospheric pressure.
An attack, for me, can feel like lightning-fast pain caused by turning my neck, bending my head forward OR backwards, the vibrations of a car, especially after a long ride, over-doing it with house &/or closet cleaning, a soda machine, a washing machine , vacuuming, riding an escalator or elevator all have at one time or another started up nerve pain. A few months back I had another set of MRIs done (cranial and brain with and without contrast) one week apart and the vibrations from the MRI machine sent me into visible spasms, with my legs, and arms jerking, flaying up and over and out, well, you get the picture. I was so spastic I could not drink a cup of water without spilling it all over myself or get my own clothes back on me without assistance. Very embarrassing! It felt as though the MRI staff was freaking out, because they had never seen this reaction before, so no help there, lol!
Tara, the P.A. at Dr.P.’s office assured me that vertigo and spasms during and after extended MRIs are not all that uncommon. This reaction went on for over 12 hours and for days afterwards I could barely function. Following a spasm attack, just like with sciatica attacks my muscles are so sore especially in my the back of upper legs and calves that I cry from the pain. I just want to sleep. My Neuro. put me on 10 mgs of Baclofen 2 Xdaily, plus upped my Neurontin from 300mg X 3 daily to 400 mgs 3X daily and this has helped…somewhat. If anyone reading this has had a similar experience while having an MRI scan could you please reply and tell us what happened?
I too, (like Carrolmcc) have cervical stenosis and a terminal restriction on the left side of my neck caused by Dystonia. Sometimes a difference in temperature like going from a hot summer day into a highly air conditioned place like a library or a mall or the other way cold and snowy out and into an overly heated café and I will get really harsh stabbing pains in the sides of my head just above the ears, and I cannot even talk when this happens. However, we don’t know what causes that, yet. Swallowing can be difficult at times and if I am eating out with friends I always order something easy to eat like finger food; avoid some of the culprits like string beans or spaghetti and remember not to talk with food in my mouth ( just like mother taught us) and just take it slow.
Living in the Northeast, in the New York area to be specific, we had a very harsh winter and over the past few years I have found that my body has a rougher time adjusting to the cold weather than it does the hot. Additionally, I have had fibromyalgia for well over a decade (something I was told is a condition, which according to a large study a high percentage of M.S.ers also has) and I believe contributes to my feeling that I have a broken internal thermometer. There are times when a breeze on my arms cause neuralgia-like pain or shopping in the supermarket’s freezer area can give me the same reaction, therefore I endure the strange looks I get from people looking at my long sleeve shirts. When the temperatures reaches into the high 80’s and the humidity percentages are likewise high, I feel like a melted puddle of goo, where every single movement is a chore. If this is something you can relate to please comment.
Doc P. does not believe in talking about centimeter numbers or exact locations of lesions and white matter changes indicated on test reports. He tells me, “I am the doctor, and that is for me to worry about” and as the patient “you have your own job taking care of yourself.” This is not an old fashion, condescending attitude, mind you, he feels the numbers are for the most part meaningless to the patient instead it is my job to keep a close eye on my M.S. symptoms as they come and go. For my particular symptoms are the real barometers to pay attention to for signs of a relapse or something new that needs to be addressed as urgent.
In fact, we all have the job of taking good care of yourselves and yes it can be very scary when your own body is attacking you. Depression is another nemesis that harkens at our doorstep and when I first heard Montel Williams confess on the Oprah show to his severe bouts of severe spells of helplessness and impending doom, I cried out loud both for him. Because he was brave enough to say it in public and for myself because I felt so connected to Montel for having shared my secret battle as well. I take 60mg. of Cymbalta now, every day, yet many times I wonder if this is really enough to keep me functioning at my best. Here’s a quirky example of a symptom that I have never heard anybody say they have…I cannot spread my toes, worse on the right foot is this just me?
I do get comfort from the calming thoughts that support is always available on here and other sites, even if the answers to your questions are not forthcoming. I hope somehow I’ve helped someone on this M.S. World Org.web site today and maybe opened up a window of opportunity to express not just the big questions and serious symptoms but to share the little bothersome ones too. Good luck.
After reading so many articles, books, posts and comments on web sites, and getting first-hand knowledge from people in my M.S. support groups, the main thing I have learned is there is no way you can ever learn all about this MonSter we call Multiple Sclerosis. I am not just referring to the latest research data because that is a given how impossible it is to keep up-to-date with the changes and new medicines on the market, instead, I’m talking about the individual nuances, the bits and pieces of info which our club members disperse as a way to make us feel untied. Because, isn’t it the differences rather than the similarities that ultimately connect us and teach us that each of us have M.S. although we are individuals.
Researchers and doctors don’t walk the path we walk. Our collective stories of triumphs and letdowns are what bond us in this club where we are involuntary members, despite never having submitted our membership agreement papers. We offer sympathy and empathy to each other and it touches my heart at those times when someone, who is in a really bad place, can willingly step outside their fears and symptoms and reach their hand out to someone else who has just joined the message boards or chat rooms with a fresh tale of anguish, that they are feeling is overwhelming to them. Reaching out proves our humanity; it also proves how tough we are inside to fight on a daily basis this MonSter.
My M.S. was not easily diagnosed; it was however made, for me, by the fourth Neurologist, an expert in Alpha-Neurology, that I made an appointment with in Nov., 2002. After the full round of testing (again!!) proved positive for the presence of M.S., he started me on Copaxone in Jan. 2003, exactly the same time a tiny homeless kitten was found in my basement. Even though I did not feel capable to care for this helpless little creature, nevertheless, I named him Zoey and we went through the process side by side. However, I should point out that my symptoms go back to the 1980’s, with tell-tale signs like losing my balance, buttoning my shirts and sweaters crooked (lol), and so many symptoms that came and went, on a weekly basis, making no sense whatsoever.
Carrolmcc mentions the sensation of experiencing attacks, which she calls “nervous system storms” and I could not have said it better myself because I am very familiar with what I call internal lightning ‘storms” or “strikes”. In fact real lightning storms literally mess with my head giving me sharp pains on the top and along the sides of my head, which does not turn into a migraine headache,(that is a whole ‘nother ballpark) in fact most days the pain stops right after the storm passes. My Neuro. Dr. P. says this has to do with the changes in barometric pressure. True, though, there is very little info on the internet about this subject,(there is not a distinction made between muscle spasmsin the back or legs and NERVE spasms through-out the entire body) in fact, there is far more about the psychological effects of thunderstorms than there is about the physical reactions, but trust me, I did read a few posts where other M.S.er’s admitted they are very sensitive to atmospheric pressure.
An attack, for me, can feel like lightning-fast pain caused by turning my neck, bending my head forward OR backwards, the vibrations of a car, especially after a long ride, over-doing it with house &/or closet cleaning, a soda machine, a washing machine , vacuuming, riding an escalator or elevator all have at one time or another started up nerve pain. A few months back I had another set of MRIs done (cranial and brain with and without contrast) one week apart and the vibrations from the MRI machine sent me into visible spasms, with my legs, and arms jerking, flaying up and over and out, well, you get the picture. I was so spastic I could not drink a cup of water without spilling it all over myself or get my own clothes back on me without assistance. Very embarrassing! It felt as though the MRI staff was freaking out, because they had never seen this reaction before, so no help there, lol!
Tara, the P.A. at Dr.P.’s office assured me that vertigo and spasms during and after extended MRIs are not all that uncommon. This reaction went on for over 12 hours and for days afterwards I could barely function. Following a spasm attack, just like with sciatica attacks my muscles are so sore especially in my the back of upper legs and calves that I cry from the pain. I just want to sleep. My Neuro. put me on 10 mgs of Baclofen 2 Xdaily, plus upped my Neurontin from 300mg X 3 daily to 400 mgs 3X daily and this has helped…somewhat. If anyone reading this has had a similar experience while having an MRI scan could you please reply and tell us what happened?
I too, (like Carrolmcc) have cervical stenosis and a terminal restriction on the left side of my neck caused by Dystonia. Sometimes a difference in temperature like going from a hot summer day into a highly air conditioned place like a library or a mall or the other way cold and snowy out and into an overly heated café and I will get really harsh stabbing pains in the sides of my head just above the ears, and I cannot even talk when this happens. However, we don’t know what causes that, yet. Swallowing can be difficult at times and if I am eating out with friends I always order something easy to eat like finger food; avoid some of the culprits like string beans or spaghetti and remember not to talk with food in my mouth ( just like mother taught us) and just take it slow.
Living in the Northeast, in the New York area to be specific, we had a very harsh winter and over the past few years I have found that my body has a rougher time adjusting to the cold weather than it does the hot. Additionally, I have had fibromyalgia for well over a decade (something I was told is a condition, which according to a large study a high percentage of M.S.ers also has) and I believe contributes to my feeling that I have a broken internal thermometer. There are times when a breeze on my arms cause neuralgia-like pain or shopping in the supermarket’s freezer area can give me the same reaction, therefore I endure the strange looks I get from people looking at my long sleeve shirts. When the temperatures reaches into the high 80’s and the humidity percentages are likewise high, I feel like a melted puddle of goo, where every single movement is a chore. If this is something you can relate to please comment.
Doc P. does not believe in talking about centimeter numbers or exact locations of lesions and white matter changes indicated on test reports. He tells me, “I am the doctor, and that is for me to worry about” and as the patient “you have your own job taking care of yourself.” This is not an old fashion, condescending attitude, mind you, he feels the numbers are for the most part meaningless to the patient instead it is my job to keep a close eye on my M.S. symptoms as they come and go. For my particular symptoms are the real barometers to pay attention to for signs of a relapse or something new that needs to be addressed as urgent.
In fact, we all have the job of taking good care of yourselves and yes it can be very scary when your own body is attacking you. Depression is another nemesis that harkens at our doorstep and when I first heard Montel Williams confess on the Oprah show to his severe bouts of severe spells of helplessness and impending doom, I cried out loud both for him. Because he was brave enough to say it in public and for myself because I felt so connected to Montel for having shared my secret battle as well. I take 60mg. of Cymbalta now, every day, yet many times I wonder if this is really enough to keep me functioning at my best. Here’s a quirky example of a symptom that I have never heard anybody say they have…I cannot spread my toes, worse on the right foot is this just me?
I do get comfort from the calming thoughts that support is always available on here and other sites, even if the answers to your questions are not forthcoming. I hope somehow I’ve helped someone on this M.S. World Org.web site today and maybe opened up a window of opportunity to express not just the big questions and serious symptoms but to share the little bothersome ones too. Good luck.
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