Aa
I need input from all of you
The Health Pages are coming along slowly. We put up another four essays this week. I would like to have any of you who care to help us out with a couple topics.
1) MedHelp has requested that we do a page on Acronyms (like DMDs for Disease Modifying Drugs). I can come with some, but I'm not the best one to do it because I already know most of them and don't think of them as a problem. Would any of you who have ever wondered about any, even if you know them now, post and list them?
2) I would like to have a section on what people have gone through hanging around in Limbo. I could do it, but it would be so much more powerful in other people's words. Just a paragraph or two, but from several people. Things like doubting your own sanity, other's doubting your illness or fatigue, not being able to picture your future, spending money and time searching for a diagnosis. Most of you have posted these thoughts already, but we can't go back and find each of them.
If you could recapture some of the most troubling moments or problems and express them it would be a fantastic thing to have. Most of the new people to the forum express comfort in hearing the words of others that validate some of their own, worst, private thoughts. I would like us to share some of these. I will submit them pretty much as you write them, spellings, grammar, and all. I want them to be "your" words. They will go in with whatever you sign the post with - your nickname, your real name, whether you state that you are diagnosed now or not, etc.
3) I also am going to make up a glossary of terms used in MRI reports, like the one I did before. If there are terms you would like to see defined, submit those, too. (Foci - More than one discreet spot)
And check out the new pages!
Quix (Dx'd, 3/2007 on Avonex)
1) MedHelp has requested that we do a page on Acronyms (like DMDs for Disease Modifying Drugs). I can come with some, but I'm not the best one to do it because I already know most of them and don't think of them as a problem. Would any of you who have ever wondered about any, even if you know them now, post and list them?
2) I would like to have a section on what people have gone through hanging around in Limbo. I could do it, but it would be so much more powerful in other people's words. Just a paragraph or two, but from several people. Things like doubting your own sanity, other's doubting your illness or fatigue, not being able to picture your future, spending money and time searching for a diagnosis. Most of you have posted these thoughts already, but we can't go back and find each of them.
If you could recapture some of the most troubling moments or problems and express them it would be a fantastic thing to have. Most of the new people to the forum express comfort in hearing the words of others that validate some of their own, worst, private thoughts. I would like us to share some of these. I will submit them pretty much as you write them, spellings, grammar, and all. I want them to be "your" words. They will go in with whatever you sign the post with - your nickname, your real name, whether you state that you are diagnosed now or not, etc.
3) I also am going to make up a glossary of terms used in MRI reports, like the one I did before. If there are terms you would like to see defined, submit those, too. (Foci - More than one discreet spot)
And check out the new pages!
Quix (Dx'd, 3/2007 on Avonex)
The flip side -
Maybe it's how it all came about, or maybe it's a personality thing. Regardless of the origin, when I received my MS Dx my body was on it's way toward healing from the 1st major episode, and after that time, I was determined to prove my Doctors wrong.
I don't know why I did this, really. Distrust? Denial? MS is not easy to diagnosis, and there are a lot of mimics? Ol' fashion Irish, Italian stubborness? I've still not totally figured it out.
My journey brought me to this forum. I was taught so much here. It was a slow beginning, but I started to believe. I started treatment despite my fears of taking meds and the "what if they are really wrong, and what is this stuff going to do to my body if they are." This was a turning point, and I eventually gave in and know now I have MS, unless something else pops up.
We have so much in common, out of control bodies, labels on our foreheads that read "classic stress case." Even though we don't all share an offical MS Dx, I wanted there to be a flip side to the limbo land posts, and most importantly, a big mention to the other thing seperating us; TREATMENT, something no-one should be denied.
Not sure if this captures what I wanted to say about limbo and Dx. But please take what can be used for the Health Pages.
SL
Maybe it's how it all came about, or maybe it's a personality thing. Regardless of the origin, when I received my MS Dx my body was on it's way toward healing from the 1st major episode, and after that time, I was determined to prove my Doctors wrong.
I don't know why I did this, really. Distrust? Denial? MS is not easy to diagnosis, and there are a lot of mimics? Ol' fashion Irish, Italian stubborness? I've still not totally figured it out.
My journey brought me to this forum. I was taught so much here. It was a slow beginning, but I started to believe. I started treatment despite my fears of taking meds and the "what if they are really wrong, and what is this stuff going to do to my body if they are." This was a turning point, and I eventually gave in and know now I have MS, unless something else pops up.
We have so much in common, out of control bodies, labels on our foreheads that read "classic stress case." Even though we don't all share an offical MS Dx, I wanted there to be a flip side to the limbo land posts, and most importantly, a big mention to the other thing seperating us; TREATMENT, something no-one should be denied.
Not sure if this captures what I wanted to say about limbo and Dx. But please take what can be used for the Health Pages.
SL
I already sent MedHelp one list of Acro's some time ago...what did they do with it. It was plenty to get the health page started...
Heather
Heather
Hi Quix
I have read the articles so far and it looks excellent!
TN = Trigeminal neuralgia
ON = Optic neuritis
Sx = Symptoms
Dx = Diagnosis
Just a few that tripped me up when I first joined.
Mri term: possible focus of increased signal = ?
Foci ? is this reffering to one or is it reffering to a few?
I assume A focus is reffering to one leasion?
Gollie
I have read the articles so far and it looks excellent!
TN = Trigeminal neuralgia
ON = Optic neuritis
Sx = Symptoms
Dx = Diagnosis
Just a few that tripped me up when I first joined.
Mri term: possible focus of increased signal = ?
Foci ? is this reffering to one or is it reffering to a few?
I assume A focus is reffering to one leasion?
Gollie
I really don't know muck about all that is going on with me but I do know that when I tend to look up thinks I find myself right back to here and everytime I ask a ? I find that most of you have all ready been though it.
But if you can think of anything I can help with I'm willing to give it a go
Cowboy
But if you can think of anything I can help with I'm willing to give it a go
Cowboy
Sorry, This might be too long. If it is I can cut it down?? S
Limbo Land.
I am a 37 year old Australian. I was very physically active (I love triathlon, though I just do it and am not fast or competitive), and run an environmental business. I live in Philippines. I am single and have 2 dogs and 2 cats, as my 'children' for now. I hope to get pregnant this year, as I have always wanted to have a family. I have always been pretty healthy aside from being hypothryoid (diagnosed in 2000), having a pituitary adenoma found on MRI, and having PCOS.
Things for me started being weird in middle of 2006 when I had a few episodes of visual disturbances (flickering vision), which came on after long exercise sessions, flashing lights in my visual field, and also i started having severe strange short-lasting headaches. I managed to ignore this and some other things which I passed off as maybe I am imagining this (like an episode that lasted for about 4 months of having trouble going to the toilet - I guess urinary hesitancy), strange sensations on my face), an inner tremor that lasted for a few weeks.
I was diagnosed with asthma early 2007, then also started having some allergy problems - fairly major allergic reactions, but without being able to identify the cause. Then I found I was having major problems with being so tired. It felt like I felt when my hypothyroid was first diagnosed - but thyroid blood tests were fine.
I suspected endocrine stuff first and went to see a new endocrinologist to get a second opinion. She seemed ok first visit, but when all tests came back within normal range she dismissed me. Went back to my regular endo and told him how I was feeling and the symptoms. He repeated MRI to see if was pituitary. Some non-specific MRI findings - punctate white spots - probably not significant.
He then did some blood work. One of the tests was for cardiac enzymes. These came back very high. He admitted me to the hospital to rule out heart attack (my heart was fine), and also referred me to a neurologist. This was mid-2007. The hospital neurologist bounced into my room told me I have MS (oh he never examined me, only his intern did and just briefly in the ER) and then bounced out again. I cried myself to sleep that night. Then they did all the evoked potentials tests etc. which essentially came back negative (except for VEP - which he discounted) and he told me it's not MS. We don't know what's wrong. Go back to your endocrinologist. The 'cardiac' enzymes remained high up to my last testing 6 months ago. I haven't retested, because what's the point in knowing, it's not like we're going to do anything about it.
Then he experimented with my thyroid drugs, in case it was them - either allergy or hyper to see if it improved the cardiac enzymes. I was sent very hypo.... but it didn't relieve the symptoms, or significantly reduce the enzyme level.... and it took 3 months to recover from the hypo... and my levels are still out now.
My poor endo. He still suspects MS. Referred me to another neuro. She also didn't examine me for longer than 5 minutes, but when the repeated VEP was normal, said she can't do anything and offered antidepressants. That was 6 months ago. She said to come back in 3 months. I didn't bother. I don't want to see another dr. I don't even want to see my endo, though he is a good doctor and a nice man.
How do I feel? I feel like this is just in my head and that I should be able to will it away. That this is a sign of laziness, weakness and personality disorder. I feel like I am wasting my life being obsessed with my health (though there really are some tests that really came back abnormal, though a thorough neuro exam has never been done). But they are non-specific.
I have read up on somatiform illnesses and am trying to convince myself it may fit (though I know in my heart that it doesn't really).
I feel like a fraud. How can I be having symptoms and dare to complain about them when there is nothing to be found wrong. I am still completely functional. And then there are other's much worse off than me who are still not diagnosed.
I kick myself mentally every time someone asks me how I am and I dare to say how I am really feeling. I know they think I am a hypochondriac and obsessed with my health. I am trying (not always successfully) to hide this. I am so mad with myself for being weak. This can be very isolating.
I would be happy with a confirmed diagnosis of some sort, even if it was that I am crazy. If it could justified and not come as a brush off.....
For now it's just wait and see and see if anything gets bad enough to justify going back to a doctor and getting on the doctor treadmill again. I will have a repeat MRI later in the year - for monitoring the pituitary adenoma. I am scared it will show something and I am scared that it won't. I am trying to ignore everything and focus on my work and getting back into fitness after my "annus horribilis".....
What a life!
Sally
Limbo Land.
I am a 37 year old Australian. I was very physically active (I love triathlon, though I just do it and am not fast or competitive), and run an environmental business. I live in Philippines. I am single and have 2 dogs and 2 cats, as my 'children' for now. I hope to get pregnant this year, as I have always wanted to have a family. I have always been pretty healthy aside from being hypothryoid (diagnosed in 2000), having a pituitary adenoma found on MRI, and having PCOS.
Things for me started being weird in middle of 2006 when I had a few episodes of visual disturbances (flickering vision), which came on after long exercise sessions, flashing lights in my visual field, and also i started having severe strange short-lasting headaches. I managed to ignore this and some other things which I passed off as maybe I am imagining this (like an episode that lasted for about 4 months of having trouble going to the toilet - I guess urinary hesitancy), strange sensations on my face), an inner tremor that lasted for a few weeks.
I was diagnosed with asthma early 2007, then also started having some allergy problems - fairly major allergic reactions, but without being able to identify the cause. Then I found I was having major problems with being so tired. It felt like I felt when my hypothyroid was first diagnosed - but thyroid blood tests were fine.
I suspected endocrine stuff first and went to see a new endocrinologist to get a second opinion. She seemed ok first visit, but when all tests came back within normal range she dismissed me. Went back to my regular endo and told him how I was feeling and the symptoms. He repeated MRI to see if was pituitary. Some non-specific MRI findings - punctate white spots - probably not significant.
He then did some blood work. One of the tests was for cardiac enzymes. These came back very high. He admitted me to the hospital to rule out heart attack (my heart was fine), and also referred me to a neurologist. This was mid-2007. The hospital neurologist bounced into my room told me I have MS (oh he never examined me, only his intern did and just briefly in the ER) and then bounced out again. I cried myself to sleep that night. Then they did all the evoked potentials tests etc. which essentially came back negative (except for VEP - which he discounted) and he told me it's not MS. We don't know what's wrong. Go back to your endocrinologist. The 'cardiac' enzymes remained high up to my last testing 6 months ago. I haven't retested, because what's the point in knowing, it's not like we're going to do anything about it.
Then he experimented with my thyroid drugs, in case it was them - either allergy or hyper to see if it improved the cardiac enzymes. I was sent very hypo.... but it didn't relieve the symptoms, or significantly reduce the enzyme level.... and it took 3 months to recover from the hypo... and my levels are still out now.
My poor endo. He still suspects MS. Referred me to another neuro. She also didn't examine me for longer than 5 minutes, but when the repeated VEP was normal, said she can't do anything and offered antidepressants. That was 6 months ago. She said to come back in 3 months. I didn't bother. I don't want to see another dr. I don't even want to see my endo, though he is a good doctor and a nice man.
How do I feel? I feel like this is just in my head and that I should be able to will it away. That this is a sign of laziness, weakness and personality disorder. I feel like I am wasting my life being obsessed with my health (though there really are some tests that really came back abnormal, though a thorough neuro exam has never been done). But they are non-specific.
I have read up on somatiform illnesses and am trying to convince myself it may fit (though I know in my heart that it doesn't really).
I feel like a fraud. How can I be having symptoms and dare to complain about them when there is nothing to be found wrong. I am still completely functional. And then there are other's much worse off than me who are still not diagnosed.
I kick myself mentally every time someone asks me how I am and I dare to say how I am really feeling. I know they think I am a hypochondriac and obsessed with my health. I am trying (not always successfully) to hide this. I am so mad with myself for being weak. This can be very isolating.
I would be happy with a confirmed diagnosis of some sort, even if it was that I am crazy. If it could justified and not come as a brush off.....
For now it's just wait and see and see if anything gets bad enough to justify going back to a doctor and getting on the doctor treadmill again. I will have a repeat MRI later in the year - for monitoring the pituitary adenoma. I am scared it will show something and I am scared that it won't. I am trying to ignore everything and focus on my work and getting back into fitness after my "annus horribilis".....
What a life!
Sally
How do you want us to send our experience for the limbo landers? To a thread, or will it be compiled into a single article.
I will contribute on that one.
Sally
I will contribute on that one.
Sally
I just want to say thank you I think the limbo land page and acryonms will be great to us newbies! I would write you something but others have far better english skills! If no one writes let me know I will I just think there are some that are great writers in limbo land I am not one of them.
Thanks for your hard work!
Mary
accroynm - ON was confusing to me
def of Bilateral and other terms like that?
def of Lesions ( the delimination? sp) that was new to me.
Thanks for your hard work!
Mary
accroynm - ON was confusing to me
def of Bilateral and other terms like that?
def of Lesions ( the delimination? sp) that was new to me.
That wouldn't be a problem and is a great idea. The person who submits the page can always edit them.
BTW - Anyone can submit a page!
Q
BTW - Anyone can submit a page!
Q
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