Aa
Stay open to the possiblities....
There are so many people that remain in the land of limbo. No diagnosis, all kinds of different symptoms. No one understands more than I do, what it's like to not have a diagnosis of "something." Most of you already know my story, so I hesitate to repeat it here. But will give the "newbies" a very quick review. My first Neuro gave me a diagnosis of MS after the very first MRI. 7 lesions in the brain, one in the spinal cord and a host of detectable problems on my neurological exam. The Neuro was less than caring for his patients, so I went on to another Neuro. Despite my "evidence and diagnosis of MS," he took the diagnosis of MS away. I remained in limbo for three years, before finally heading to a teaching hospital in Virginia. I then was definitively given a diagnosis of MS. Five years passed with no treatment for the MS. .
The reason for my post is simple. I know how horrible it is to have all these difficulties with your body and not have a diagnosis. It's horrific, not to mention, stressful.
I would just like to say that you have to remain open to the possibility that your symptoms can be caused by so many disorders. So many of the neurological symptoms associated with MS, are also the symptoms of so many others problems. MS is not a clear-cut disease with a simple diagnosis. There are literally dozens of tests that have to be completed to rule "out" some of those 'other' diseases. Among that testing, there has to be time. Time to see if your problems relapse and remit or remain constant. This is very important information to a Neurologist, when he is trying to diagnose you.
We put so much stress on ourselves, when we say, "I just know it's MS. I am sure of it. My symptoms fit perfectly." Sure, it certainly can be MS, but can also be a dozen other neurological problems. Just keep your mind open to the 'other' possibilities. Nothing would be worse than to push for a diagnosis of MS, be treated as if you had MS, then really have another problem other than MS. Consequently, not being treated for that "other" disease.
Patience is key, when you are in limbo land. Are there some really 'arsehole' Neurologists out there? You bet there is. If you aren't getting any answers from your current doctor, than I highly suggest finding another one. Someone who will listen, but also someone that is not quick to jump to a diagnosis of MS. I shudder when I think of how many people may be walking around with a diagnosis of MS, when they actually have some other neurological problem, that is receiving no treatment at all.
During those times of uncertainity, remain open to the possibilities that it is something other than MS. I really do care about each and every member on this forum. I also care enough to want you treated for the correct disorder. More harm can be done to get a quick diagnosis of MS and really not have MS at all. I hope all of you can understand what I mean, but posting this thread. It's because I DO care, that I voice my opinion.
Best Wishes, Heather
The reason for my post is simple. I know how horrible it is to have all these difficulties with your body and not have a diagnosis. It's horrific, not to mention, stressful.
I would just like to say that you have to remain open to the possibility that your symptoms can be caused by so many disorders. So many of the neurological symptoms associated with MS, are also the symptoms of so many others problems. MS is not a clear-cut disease with a simple diagnosis. There are literally dozens of tests that have to be completed to rule "out" some of those 'other' diseases. Among that testing, there has to be time. Time to see if your problems relapse and remit or remain constant. This is very important information to a Neurologist, when he is trying to diagnose you.
We put so much stress on ourselves, when we say, "I just know it's MS. I am sure of it. My symptoms fit perfectly." Sure, it certainly can be MS, but can also be a dozen other neurological problems. Just keep your mind open to the 'other' possibilities. Nothing would be worse than to push for a diagnosis of MS, be treated as if you had MS, then really have another problem other than MS. Consequently, not being treated for that "other" disease.
Patience is key, when you are in limbo land. Are there some really 'arsehole' Neurologists out there? You bet there is. If you aren't getting any answers from your current doctor, than I highly suggest finding another one. Someone who will listen, but also someone that is not quick to jump to a diagnosis of MS. I shudder when I think of how many people may be walking around with a diagnosis of MS, when they actually have some other neurological problem, that is receiving no treatment at all.
During those times of uncertainity, remain open to the possibilities that it is something other than MS. I really do care about each and every member on this forum. I also care enough to want you treated for the correct disorder. More harm can be done to get a quick diagnosis of MS and really not have MS at all. I hope all of you can understand what I mean, but posting this thread. It's because I DO care, that I voice my opinion.
Best Wishes, Heather
I just sit and read this thread in amazement. Heather, you're spoken your truth beautifully and everyone is the richer for it! Thank you so much. This is truly an "Important" thread like a few of the others we keep bumped up. I am so touched and there is nothing I could possibly add.
Quix
Quix
Oh honey...you don't have a thing to apologize for. I was not upset at all. Trust me on this one. I wrote what I did, to help those people who do not understand; what it's like to have "Invisible MS."
I totally understand how bad you have it, just trying to make it through the day, Samantha. God love you for determination and strength. I happen to think you are remarkable.
No one hopes more than I do, that you will soon fit "in some box," no matter what the diagnosis, so you can start to get the help you need.
God love all of you...this forum is for discussion and learning, that's exactly what we are doing. I learn more from all of you, everyday. You are a true blessing...all of you.
Heather
I totally understand how bad you have it, just trying to make it through the day, Samantha. God love you for determination and strength. I happen to think you are remarkable.
No one hopes more than I do, that you will soon fit "in some box," no matter what the diagnosis, so you can start to get the help you need.
God love all of you...this forum is for discussion and learning, that's exactly what we are doing. I learn more from all of you, everyday. You are a true blessing...all of you.
Heather
I hope that I did not sound glib about a DX of CFS - I did not mean to sound that way. It is a massive thing to happen to you and will change your life enormously. I should know; I've had it.
I had one thing on my side; my age. I was only 19 when symptoms first presented and 20 at DX. Whatever happened to get me well enough to leave my parents house again after 6 months of chronic illness and heartache I will never know. At this point I am wondering if it was even CFS at all, but maybe I'll never know. I apparently don't have it now - according to my CFS Doc - so I just have to wonder exactly how related this current illness is to that one.
For those of you who have CFS I give you my full sympathy and support. I do have some info on it and will post it up soon - I'm working a full day of classes tomorrow at school and had a meeting til 7pm tonight so am beyond the point at which I could do it now. Hoping for tomorrow night or Thursday, my day off.
Mel
I had one thing on my side; my age. I was only 19 when symptoms first presented and 20 at DX. Whatever happened to get me well enough to leave my parents house again after 6 months of chronic illness and heartache I will never know. At this point I am wondering if it was even CFS at all, but maybe I'll never know. I apparently don't have it now - according to my CFS Doc - so I just have to wonder exactly how related this current illness is to that one.
For those of you who have CFS I give you my full sympathy and support. I do have some info on it and will post it up soon - I'm working a full day of classes tomorrow at school and had a meeting til 7pm tonight so am beyond the point at which I could do it now. Hoping for tomorrow night or Thursday, my day off.
Mel
I am truely sorry for my comments and i would never want to upset you are make you feel bad im just frustrated that i cant get help for the things i need im trapped in my house as i cant walk far i use a cane i use a wheelchair but because i dont fit into any bodys boxes at the moment i cant get help!!
The friend who has MS jogs three miles a day she goes to collage she has three boys she is out everynight running football club with them she goes out most weekends to late and has not had a relapse in five years!! which is great and we laugh together how she is so fit and i am not and that she has a badge and i dont but she also agrees untill i fit in a box i wont get help its how it seems to work over here and im sure all those years of fighting to know what is wrong with you you will realise that.
I know what it is like to have a illness that does not show on the outside one day ill be ok enough to pick the kids up another day i can barly get out of bed and people dont understand this they look at you and you look fine but inside your not.
Lots of love sam x
The friend who has MS jogs three miles a day she goes to collage she has three boys she is out everynight running football club with them she goes out most weekends to late and has not had a relapse in five years!! which is great and we laugh together how she is so fit and i am not and that she has a badge and i dont but she also agrees untill i fit in a box i wont get help its how it seems to work over here and im sure all those years of fighting to know what is wrong with you you will realise that.
I know what it is like to have a illness that does not show on the outside one day ill be ok enough to pick the kids up another day i can barly get out of bed and people dont understand this they look at you and you look fine but inside your not.
Lots of love sam x
Thank you for your kind words.
May I say something about the "handicapped placard," as we call them in the United States? I also do not use a wheelchair...I do not use a cane to walk, I do not "look" like I have anything wrong with me....you see...I have "Invisible MS." And "I" have a handicapped placard. You may ask why. Why Heather if you do not use a wheelchair, if you walked unaided without a cane?
You see, I may have "Invisible MS," but I park in a handicapped area. Why? Because, with my course of MS, I can walk briskly INTO the store...I am full of energy and ready to do my shopping, but you see...several minutes into my shopping experience, my legs begin to feel like they are in quick sand. My legs become heavier with each step that I take. Suddenly I am tired. I just want to go home. I am only half way through my shopping list...I have yet to get the bread, the milk, the washing powder...and I say, "How will I ever make it?" I muster all the strength I can, to finish my shopping. People besides myself, are counting on me to bring home something for supper or that milk....something they need so they can have their favorite bowl of cereal in the morning. I struggle through. I complete my list. Then I stand in line for what seems like an hour, waiting to be checked out by the cashier. I grow more tired by the minute.
I start out of the store. I smile when I see that my car is only a few feet away. Thank God, I don't have much further to walk. Thank God for that handicapped placard.
That's why "I" am so grateful for that special....'handicapped placard.' Something no would else would even know that I needed, when they saw me ENTER the store....
This is my story, but could be, the story of so many with MS. Our disabilitiy is not always there, for everyone to see.
Hugs, Heather
May I say something about the "handicapped placard," as we call them in the United States? I also do not use a wheelchair...I do not use a cane to walk, I do not "look" like I have anything wrong with me....you see...I have "Invisible MS." And "I" have a handicapped placard. You may ask why. Why Heather if you do not use a wheelchair, if you walked unaided without a cane?
You see, I may have "Invisible MS," but I park in a handicapped area. Why? Because, with my course of MS, I can walk briskly INTO the store...I am full of energy and ready to do my shopping, but you see...several minutes into my shopping experience, my legs begin to feel like they are in quick sand. My legs become heavier with each step that I take. Suddenly I am tired. I just want to go home. I am only half way through my shopping list...I have yet to get the bread, the milk, the washing powder...and I say, "How will I ever make it?" I muster all the strength I can, to finish my shopping. People besides myself, are counting on me to bring home something for supper or that milk....something they need so they can have their favorite bowl of cereal in the morning. I struggle through. I complete my list. Then I stand in line for what seems like an hour, waiting to be checked out by the cashier. I grow more tired by the minute.
I start out of the store. I smile when I see that my car is only a few feet away. Thank God, I don't have much further to walk. Thank God for that handicapped placard.
That's why "I" am so grateful for that special....'handicapped placard.' Something no would else would even know that I needed, when they saw me ENTER the store....
This is my story, but could be, the story of so many with MS. Our disabilitiy is not always there, for everyone to see.
Hugs, Heather
zilla
a dx of CFS or M.E as we call it in the uk is not to be taken lighly and if you visit the forum for it on here curls has some fantastic research about it and has been a great support to me as i have always kept my option open specially since the MRI came back clear and was reluctant to have the other tests iv just had but they have to rule all other things out, im learning towards fibro and really want to get to see a rheumy but my doc is sure its something neuro based and is learning towards MS but fibro is in a away and CFS linkned to the CNS and causes neuro issues some people are bed ridden with it, infact my friend who has MS had it tens years apart from two attacks is so healthy more then me i can barly walk without a stick and have to go in a wheelchair if i go on long trips and this girl jogs most days yet has a disabled badge, MS,FM,CFS are not a death sentance but they are cruel illnesses for some its a awfull painfull, back breaking illness for others it seems to touch lighly in all of the named conditions.
If i was working still, going out, being the leader still in sunday school at church i would not mind what this was if i was not in constant pain, if i did not let people down all the time because of being ill i would not care, but i grieve for my losted life im honest, i want my old life back, but thats my will not gods.
If i knew what i was fighting i would reasearch it, do the best i could to make things more comfortable for myself which i am trying to do anyway but i could face it front on and that would help so much, i could scream with the frustration of this all, oh how quickly your lifes turns around. ill look at that site.
Heather
wonderfull posting, and you have been through so much what a wonderfull strong person you are, you knew all along what you had and noone believed you not even docotors, how awfull, im glad you have some peace now and some treatment and im glad that consultant is paying for his mistakes i pray no-one else gets caught up with him, im sorry for the losted years of frustration and pain.
take care samantha x
a dx of CFS or M.E as we call it in the uk is not to be taken lighly and if you visit the forum for it on here curls has some fantastic research about it and has been a great support to me as i have always kept my option open specially since the MRI came back clear and was reluctant to have the other tests iv just had but they have to rule all other things out, im learning towards fibro and really want to get to see a rheumy but my doc is sure its something neuro based and is learning towards MS but fibro is in a away and CFS linkned to the CNS and causes neuro issues some people are bed ridden with it, infact my friend who has MS had it tens years apart from two attacks is so healthy more then me i can barly walk without a stick and have to go in a wheelchair if i go on long trips and this girl jogs most days yet has a disabled badge, MS,FM,CFS are not a death sentance but they are cruel illnesses for some its a awfull painfull, back breaking illness for others it seems to touch lighly in all of the named conditions.
If i was working still, going out, being the leader still in sunday school at church i would not mind what this was if i was not in constant pain, if i did not let people down all the time because of being ill i would not care, but i grieve for my losted life im honest, i want my old life back, but thats my will not gods.
If i knew what i was fighting i would reasearch it, do the best i could to make things more comfortable for myself which i am trying to do anyway but i could face it front on and that would help so much, i could scream with the frustration of this all, oh how quickly your lifes turns around. ill look at that site.
Heather
wonderfull posting, and you have been through so much what a wonderfull strong person you are, you knew all along what you had and noone believed you not even docotors, how awfull, im glad you have some peace now and some treatment and im glad that consultant is paying for his mistakes i pray no-one else gets caught up with him, im sorry for the losted years of frustration and pain.
take care samantha x
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