Aa
Why am i so bad but pass the neuro exam??
Just spent the day crying as feel like poo today!
Told my boyfriend that he should leave me as i'm not me anymore!!
I seriously want to disown my legs as they are tingling and burning like crazy. This is making walking so difficult!
I'm not due to see a neurologist until Oct!! Because i am just about managing to walk about, i feel until i can't that noone will take me seriously. When i go to the doctors i pass all the 'can you feel me touching your left/right foot?' 'Push on my hand with your foot' So basically i have the strength and feeling there it's just that my legs are soooo tired, throbbing, burning and tingling. When the tingling/burning is bad in my neck/legs thats when i find it so tough to walk!! Anyone eles relate to this?
So basically until i can't walk or can't do something get optic neuritis or numbness in a limb then there is nothing they will do to help.
Why is my body suffering so badly and i pass the neuro test. The only one i fail is standing up with feet together. I fall with eyes closed or open.
Sorry to sound so negative just fed up beyond belief.
Told my boyfriend that he should leave me as i'm not me anymore!!
I seriously want to disown my legs as they are tingling and burning like crazy. This is making walking so difficult!
I'm not due to see a neurologist until Oct!! Because i am just about managing to walk about, i feel until i can't that noone will take me seriously. When i go to the doctors i pass all the 'can you feel me touching your left/right foot?' 'Push on my hand with your foot' So basically i have the strength and feeling there it's just that my legs are soooo tired, throbbing, burning and tingling. When the tingling/burning is bad in my neck/legs thats when i find it so tough to walk!! Anyone eles relate to this?
So basically until i can't walk or can't do something get optic neuritis or numbness in a limb then there is nothing they will do to help.
Why is my body suffering so badly and i pass the neuro test. The only one i fail is standing up with feet together. I fall with eyes closed or open.
Sorry to sound so negative just fed up beyond belief.
At school right now, we are working on the subject of pain. Also, I work for a hospice where pain is a constant concern for all our patients.
Pain is one of the most under treated symptoms. This is because there have been so many misconceptions in the past about addiction and pain tolerance with it being all in their heads. Many doctors still think this way, although research shows otherwise. Those who are in REAL pain usually don't get addicted to the medications that they are on. It can happen, but it is not like the addiction that most people think of when they think of an addict, if that makes sense.
At school, we are taught that pain is whatever the patient says it is. Just because they look okay or it doesn't seem to another person that the patient should be having pain, doesn't mean they aren't. It is sad that what we are taught now never gets ingrained into other medical professionals who learned something different.
Acute pain is different from chronic pain. With acute pain, there is actually a change in a persons vital signs, with increases in breathing, heart rate, among other things. When a person has chronic pain, this no longer happens. The body adjusts to the new "normal". This doesn't mean that the pain isn't there, the body just doesn't respond the same. I think this is another reason that pain is under treated.
Don't know why I felt compelled to write this, lol, I am just saying that I agree with you. I, too, suffer from chronic pain. I was not taken seriously for like a year and a half. It wasn't until I started to show signs on my neuro exam that I was taken serious by any doctor. Sad, I know, but I think that these doctors need to learn the "new way" of thinking, in that pain is whatever the patient says it is.
Sarah
Pain is one of the most under treated symptoms. This is because there have been so many misconceptions in the past about addiction and pain tolerance with it being all in their heads. Many doctors still think this way, although research shows otherwise. Those who are in REAL pain usually don't get addicted to the medications that they are on. It can happen, but it is not like the addiction that most people think of when they think of an addict, if that makes sense.
At school, we are taught that pain is whatever the patient says it is. Just because they look okay or it doesn't seem to another person that the patient should be having pain, doesn't mean they aren't. It is sad that what we are taught now never gets ingrained into other medical professionals who learned something different.
Acute pain is different from chronic pain. With acute pain, there is actually a change in a persons vital signs, with increases in breathing, heart rate, among other things. When a person has chronic pain, this no longer happens. The body adjusts to the new "normal". This doesn't mean that the pain isn't there, the body just doesn't respond the same. I think this is another reason that pain is under treated.
Don't know why I felt compelled to write this, lol, I am just saying that I agree with you. I, too, suffer from chronic pain. I was not taken seriously for like a year and a half. It wasn't until I started to show signs on my neuro exam that I was taken serious by any doctor. Sad, I know, but I think that these doctors need to learn the "new way" of thinking, in that pain is whatever the patient says it is.
Sarah
Thank you for having the courage to share this with us. I needed your words.
We are caught in a time period that simply does not have all the tests that are needed to determine the cause/source of our difficulty. I wonder when in the future that will change?
Here is what I am encouraged with... when the drug Imatrix came on the market, it made migraines valid (it only works if your illness is real). Prior to that my migraines were my fault, because our mind is supposedly in the same place as our pain - in the head. And the "you look fine to me" kind of attitude is really a way of saying "grow up and stop whining".
I had a spell a couple of years ago where my pain was managed well, and I had several pain free days in a row. So you know what I discovered about people who are pain free? What a bunch of wimps! They couldn't take what we deal with. They are devastated when the bus is late. They have fits when their favorite TV show is canceled. And look out if they have a hangnail... that is close to the end of the world for them. They do the "why me" stupidity over the most meaningless things.
We have an unpredictable violence that happens in us - that causes us so much agony. Tell them that everyday from now on, someone will come up behind them and hit their hand with a hammer. They won't know when it's coming, or how hard it will hit - only that it will happen. Sometimes it will wake them up, other times it will prevent them from falling asleep. They might be at work, in a store, giving a presentation, being on vacation. The hammer doesn't care.
Ask them to think about that.
They won't.
We are caught in a time period that simply does not have all the tests that are needed to determine the cause/source of our difficulty. I wonder when in the future that will change?
Here is what I am encouraged with... when the drug Imatrix came on the market, it made migraines valid (it only works if your illness is real). Prior to that my migraines were my fault, because our mind is supposedly in the same place as our pain - in the head. And the "you look fine to me" kind of attitude is really a way of saying "grow up and stop whining".
I had a spell a couple of years ago where my pain was managed well, and I had several pain free days in a row. So you know what I discovered about people who are pain free? What a bunch of wimps! They couldn't take what we deal with. They are devastated when the bus is late. They have fits when their favorite TV show is canceled. And look out if they have a hangnail... that is close to the end of the world for them. They do the "why me" stupidity over the most meaningless things.
We have an unpredictable violence that happens in us - that causes us so much agony. Tell them that everyday from now on, someone will come up behind them and hit their hand with a hammer. They won't know when it's coming, or how hard it will hit - only that it will happen. Sometimes it will wake them up, other times it will prevent them from falling asleep. They might be at work, in a store, giving a presentation, being on vacation. The hammer doesn't care.
Ask them to think about that.
They won't.
Right there with you. I pass all of the "office testing" but have difficulty walking down the hall to the dr's office. Waiting on results from MRI's done a 8/10. Not hoping for new lesions, but hoping for new lesions - know what I mean? Something to confirm what I am feeling.
My symptoms began 10/10 with numbness/tingling in lower right leg and foot. (Initial MRI's only have a few lesions, passed EVP and LP.) Pretty much stayed there until recently when I started having extreme fatigue and burning, pain and stiffness in both legs, dizziness and difficult balancing and walking. Currently dx with ATM but new MRI could change dx.
Hang in there and fight for your patient rights. Maybe you need a new neuro?
Prayers!
My symptoms began 10/10 with numbness/tingling in lower right leg and foot. (Initial MRI's only have a few lesions, passed EVP and LP.) Pretty much stayed there until recently when I started having extreme fatigue and burning, pain and stiffness in both legs, dizziness and difficult balancing and walking. Currently dx with ATM but new MRI could change dx.
Hang in there and fight for your patient rights. Maybe you need a new neuro?
Prayers!
I feel you too! My legs are like led weights and I too passed neuro tests still waiting on MRI's. I walk and sometimes I feel like I cannot even lift them one more time, but somehow I do! Hang in there - Can't say I know it will get better but eventually someone has to take you seriously that there is truly something wrong. Find it amazing that Dr's know our bodies better than we do!
well I have at least 4 lessions all in different areas, pass all other tests, although my refexes are increased on one side Im told thats probably anxiety, and my numbness tingling stuttering, tremors weakness and fatuige must be anxiety too.
well i tried to take anxiety meds with my last attack and yes I felt less stiff and less tremors but my body still felt heavy in fact heavier and I just felt stoned so I didnt care that my house was dirty or that I had things to do. Just plopped like a blob.
well i tried to take anxiety meds with my last attack and yes I felt less stiff and less tremors but my body still felt heavy in fact heavier and I just felt stoned so I didnt care that my house was dirty or that I had things to do. Just plopped like a blob.
Well, an abnormal Rhomberg's is something though. :) What is your history? How long have you been sick? What tests have they done on you?
I started with twitching last Spring --- the first type was an increase in the ones when you falls asleep and startle. Mine started happening when I laid down and rested. I was wide awake and they increased to being every night or any time I relaxed. I then started with the other twitching, it started on my left side then moved all over my body. I mean everywhere. It was nuts. I started to take it seriously when I had some trouble swallowing then noticed I struggled holding myself up to balance. I went to a full-system meltdown by November. I've not recovered fully but I do feel better.
The Neuro that examined me told me that I had an abnormal Rhombergs and I also had INO, nystagmus which means my eye were spazzing out. lol ~ I pass many other tests, but I think there has been changes in my reflexes and sensation recently.
I have been dismissed by two recent documents; despite all sorts of vision issues. They just can't figure out what's wrong with me because my MRI's are "clean." I just don't think they are looking at the actual MRI so I took matters in my own hands and scheduled appointments with a hospital in Seattle that has a great reputation and will go over the images with me. Yay! :) Sometimes a girl gotta do what she's gotta do. I'm done waiting for good doctor's to come to me. Moving on.
Hang in there.
I started with twitching last Spring --- the first type was an increase in the ones when you falls asleep and startle. Mine started happening when I laid down and rested. I was wide awake and they increased to being every night or any time I relaxed. I then started with the other twitching, it started on my left side then moved all over my body. I mean everywhere. It was nuts. I started to take it seriously when I had some trouble swallowing then noticed I struggled holding myself up to balance. I went to a full-system meltdown by November. I've not recovered fully but I do feel better.
The Neuro that examined me told me that I had an abnormal Rhombergs and I also had INO, nystagmus which means my eye were spazzing out. lol ~ I pass many other tests, but I think there has been changes in my reflexes and sensation recently.
I have been dismissed by two recent documents; despite all sorts of vision issues. They just can't figure out what's wrong with me because my MRI's are "clean." I just don't think they are looking at the actual MRI so I took matters in my own hands and scheduled appointments with a hospital in Seattle that has a great reputation and will go over the images with me. Yay! :) Sometimes a girl gotta do what she's gotta do. I'm done waiting for good doctor's to come to me. Moving on.
Hang in there.
I feel you! I have passed those tests as well. Push against my had with your leg. While I struggle to get any strength to push that hand, they seem to think it is enough. I have horrible vertigo the past three days. I refuse to go to the doc as they will just give me some meds to deal with it instead of doing any testing to see why I have it. I just journal all of this and hope someday the f*(&!@*g neuro who said it isn't neurological will be proven wrong.
don't forget, if you have multiple lesions show on your MRI, you may get a diagnosis then! LOL...sorry, if I can't laugh at it all, I will go crazy.
Hang in there! Someday, we will know what it is that is effecting our lives!
don't forget, if you have multiple lesions show on your MRI, you may get a diagnosis then! LOL...sorry, if I can't laugh at it all, I will go crazy.
Hang in there! Someday, we will know what it is that is effecting our lives!
You must join this user group in order to participate in this discussion.
You are reading content posted in the SURVIVING NEUROLOGICAL LIMBO LAND - NO DX Group
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
