Aa
Occipital neuralgia / MS
Recently I had a really hard time recovering after a respiratory virus (Dec) among other symptoms, afterwards I had pain when I moved my eyes that was dx as optical neuritis. After reading about it I thought that I had a attack of MS.
I went to the Nero last week and he has stated that I do not have MS. I supposed because I only have 1 very small enhancing lesion behind my "Right" eyeball. Interestingly my Optical Neuritis symptoms (pain when I moved it) were in my "left"eye??? I didn't go to the Dr. for two months after the pain started.
The Neuro stated that he didn't know what was causing my other symptoms. My VEP and AEPs were normal. He didn't do a LP. I find myself wondering if he would have felt differently if he had.
Anyway, now I have this terrible throbbing pain (makes me dizzy and nauseous) at the base of my head and migraine type pain behind the left eye again (as if it ever went away) . The pain when I move it is still there and worse at the end of the day and when I close my eyes. I also have a neuralgia like pain that shoots through my temple. Also there was no problem with my C1-C2 area of my MRI that would suggest an injury to cause the pain.
It also feels better if I massage the area at the base of my skull, but hurts worse after a little while.
I have read the occipital neuralgia should be considered an exacerbation in MS. I don't know what to do? I don't want to call the DR and be a pain in the "you know what". But it's been happening for about two days now and I just had a c-spine MRI 2 1/2 weeks ago. What should I do? I don't want him to think I am crazy and I also don't want to waste the Dr. time or resources.
I am so extremely frustrated right now.
I went to the Nero last week and he has stated that I do not have MS. I supposed because I only have 1 very small enhancing lesion behind my "Right" eyeball. Interestingly my Optical Neuritis symptoms (pain when I moved it) were in my "left"eye??? I didn't go to the Dr. for two months after the pain started.
The Neuro stated that he didn't know what was causing my other symptoms. My VEP and AEPs were normal. He didn't do a LP. I find myself wondering if he would have felt differently if he had.
Anyway, now I have this terrible throbbing pain (makes me dizzy and nauseous) at the base of my head and migraine type pain behind the left eye again (as if it ever went away) . The pain when I move it is still there and worse at the end of the day and when I close my eyes. I also have a neuralgia like pain that shoots through my temple. Also there was no problem with my C1-C2 area of my MRI that would suggest an injury to cause the pain.
It also feels better if I massage the area at the base of my skull, but hurts worse after a little while.
I have read the occipital neuralgia should be considered an exacerbation in MS. I don't know what to do? I don't want to call the DR and be a pain in the "you know what". But it's been happening for about two days now and I just had a c-spine MRI 2 1/2 weeks ago. What should I do? I don't want him to think I am crazy and I also don't want to waste the Dr. time or resources.
I am so extremely frustrated right now.
Hi, Runnermom,
You've replied to an old post. Please copy what you've said, here, and start a new thread. It sounds like you probably should see a new and different neurologist/MS specialist. Your previous MS specialist sounds like s/he was blowing you off, IMO!
When you start your new thread, I'm sure others will pipe in, too.
You've replied to an old post. Please copy what you've said, here, and start a new thread. It sounds like you probably should see a new and different neurologist/MS specialist. Your previous MS specialist sounds like s/he was blowing you off, IMO!
When you start your new thread, I'm sure others will pipe in, too.
how are you feeling now?
I was googling my symptoms and came across your post, and thought wow, who is writing about me? I have almost same problems as you and my doctor is a MS specialist too. I have definite trigeminal and occipital neuralgia (for more than 20 years now) along with being tired, severe vision problems and so on. my mri has come out clean always. And my doctor's advice was to stop stress, cleanse my system, and figure out what worsens my pain.
i quit my job, do not do anything that aggravates my pain, started running, feel good with running most of the time, except during cold weather.
and i have to constantly listen to people asking me to ignore the pain.
i don't want to go to the doctor, because i do feel foolish saying all this and they cant find anything.
i do have trouble talking and articulating sometimes, and believe me, when i tell you that normally it takes a lot to shut me up. I am an intelligent person with multiple masters degrees and had to quit my job at the peak of my career, but when the pain hits, i cant hold a spoon and make words, and that is frustrating.
please do not be sorry that you are venting. it is a good outlet.
would like to know what you did to manage and how u r doing now.
I was googling my symptoms and came across your post, and thought wow, who is writing about me? I have almost same problems as you and my doctor is a MS specialist too. I have definite trigeminal and occipital neuralgia (for more than 20 years now) along with being tired, severe vision problems and so on. my mri has come out clean always. And my doctor's advice was to stop stress, cleanse my system, and figure out what worsens my pain.
i quit my job, do not do anything that aggravates my pain, started running, feel good with running most of the time, except during cold weather.
and i have to constantly listen to people asking me to ignore the pain.
i don't want to go to the doctor, because i do feel foolish saying all this and they cant find anything.
i do have trouble talking and articulating sometimes, and believe me, when i tell you that normally it takes a lot to shut me up. I am an intelligent person with multiple masters degrees and had to quit my job at the peak of my career, but when the pain hits, i cant hold a spoon and make words, and that is frustrating.
please do not be sorry that you are venting. it is a good outlet.
would like to know what you did to manage and how u r doing now.
I did go to an neuro ophthalmologist who diagnosed me with ON, he did field vision test etc and everything was fine. I did go over a month after my vision was fuzzy for a day or two and it had resolved by then. I just had new progressive glasses and attributed it to the adjustment. I read the radiologists report, it mentioned a minor enhancement behind my right globe. Nothing with the optic nerve, (my ON symptoms were in my left eye)
After that I was reading about ON and saw a list of symptoms of MS and then I thought to myself WOW maybe I am not crazy, I had been dealing with a bunch of them for a while. My Dr had me thinking that it was all in my head. I occasionally get tingling but every once in a while I was feeling as if someone had spilled something hot or cold on me.
I have been really tired and every once in a while I have a day when I have to lay down or fall down, and then I sleep like I had never slept before, hard..... Like I cannot get up for anything. (REALLY-REALLY not like me) it's as if I have been drugged)
I also have problems thinking, like grasping for words, loosing my thoughts as soon as they started. And problems speaking like I am stumbling over my words. This was really troubling for me I am a pretty smart person, I have a decent IQ and I found myself not talking because it embarrassed. me. This was very troubling.
Occasionally, esp after I have fought off a cold or something, after a hot shower I stumble out of the shower, that was scary too. Once I was getting over the flu or something and I would feel fine until I walked outside and then the fatigue was so overwhelming I would immediately got to bed. It was summer.
I've had bladder problems, hesitation. I also have been having issues with my hand, (pinky and ring finger) they don't want to do what I tell it to sometimes they feels stiff and slow moving.
I saw the MRI's I have the films, I cannot see anything. The neurologist specializes in MS and Alzheimers. A few years ago I got tested for Lyme and the other similar illnesses, all negative.
Now I have this pain in the back of my head, constant dull and it shoots to my eye and temple.
I am a mess. I feel foolish and sometimes I wonder if its in my head. I am trying to ignore these things because as my Neuro said, "I don't have MS". But sometimes it just makes me cry (and that hurts my eye) because no one can tell me whats going one. I just know they are all real and I am not crazy but what do you say when a friend asks what the Dr said? You have to tell them he said you're fine, but you feel like crap.
Sorry to vent, so sorry.
After that I was reading about ON and saw a list of symptoms of MS and then I thought to myself WOW maybe I am not crazy, I had been dealing with a bunch of them for a while. My Dr had me thinking that it was all in my head. I occasionally get tingling but every once in a while I was feeling as if someone had spilled something hot or cold on me.
I have been really tired and every once in a while I have a day when I have to lay down or fall down, and then I sleep like I had never slept before, hard..... Like I cannot get up for anything. (REALLY-REALLY not like me) it's as if I have been drugged)
I also have problems thinking, like grasping for words, loosing my thoughts as soon as they started. And problems speaking like I am stumbling over my words. This was really troubling for me I am a pretty smart person, I have a decent IQ and I found myself not talking because it embarrassed. me. This was very troubling.
Occasionally, esp after I have fought off a cold or something, after a hot shower I stumble out of the shower, that was scary too. Once I was getting over the flu or something and I would feel fine until I walked outside and then the fatigue was so overwhelming I would immediately got to bed. It was summer.
I've had bladder problems, hesitation. I also have been having issues with my hand, (pinky and ring finger) they don't want to do what I tell it to sometimes they feels stiff and slow moving.
I saw the MRI's I have the films, I cannot see anything. The neurologist specializes in MS and Alzheimers. A few years ago I got tested for Lyme and the other similar illnesses, all negative.
Now I have this pain in the back of my head, constant dull and it shoots to my eye and temple.
I am a mess. I feel foolish and sometimes I wonder if its in my head. I am trying to ignore these things because as my Neuro said, "I don't have MS". But sometimes it just makes me cry (and that hurts my eye) because no one can tell me whats going one. I just know they are all real and I am not crazy but what do you say when a friend asks what the Dr said? You have to tell them he said you're fine, but you feel like crap.
Sorry to vent, so sorry.
Can you get in to see the ophthalmologist? There may be some field testing and other tests that may help pinpoint a problem. Maybe he/she can give you some suggestions...
JJ had some excellent thoughts. One being getting an actual copy of the radiology report. Is your doc a neuro or neuro-opthalmologist? You need a neuro to follow you.
Although ON can be caused by a virus such as the one you described , it could also be a sign of MS even if it is a Clinically Isolated symptom (CIS).
There is a symptom that I have as an MS patient and it is occipital neuralgia and presents much like my trigemeinal neuritis except the pain is located at the bse of my head (nape of neck) and follows upward in a curve to the top of my head equal to the position of my ear. If I massage it , it feels better. My general neuro prescribed decadron for 3 days and it totally cleared it up.It was even more painful than my TN.
Everyone is different and everyone's MS is different and that is IF you are dx. Are diagnosed at this point in time? If not, make sure you see a MS neuro and keep a timeline of your symptoms.
I hope you start feeling better soon! We are here for any more questions or just for support.
Ren
Although ON can be caused by a virus such as the one you described , it could also be a sign of MS even if it is a Clinically Isolated symptom (CIS).
There is a symptom that I have as an MS patient and it is occipital neuralgia and presents much like my trigemeinal neuritis except the pain is located at the bse of my head (nape of neck) and follows upward in a curve to the top of my head equal to the position of my ear. If I massage it , it feels better. My general neuro prescribed decadron for 3 days and it totally cleared it up.It was even more painful than my TN.
Everyone is different and everyone's MS is different and that is IF you are dx. Are diagnosed at this point in time? If not, make sure you see a MS neuro and keep a timeline of your symptoms.
I hope you start feeling better soon! We are here for any more questions or just for support.
Ren
COMMUNITY LEADER
Hey there,
Let me see if i've got this right, you are dx with ON, had an MRI looking for lesions and the MRI did actually find 1 lighting up, on or near your optic nerve. btw these tracks cross over so the lesion being in the opposite side to the 'bad' eye is to be expected.
I (lol my bad habbit) have a few questions:
1 Did the MRI find any other lesions, ones that didn't light up?
2 Is this neuro one that specialises in MS or a general neuro?
3 Did he/she mention clinical isolated syndrome (CIS)?
4 Apart from the sx relating to the ON what if any, other sx do you have?
5 What other possible causes of the ON have been investigated?
If you look at ON its commonly associated with MS, but there are other less common causes [see wiki for basics, below is an expert]
"The most common etiology is multiple sclerosis. Up to 50% of patients with MS will develop an episode of optic neuritis, and 20-30% of the time optic neuritis is the presenting sign of MS. The presence of demyelinating white matter lesions on brain MRI at the time of presentation of optic neuritis is the strongest predictor for developing clinically definite MS.
Almost half of the patients with optic neuritis have white matter lesions consistent with multiple sclerosis. At five years follow-up, the overall risk of developing MS is 30%, with or without MRI lesions. Patients with a normal MRI still develop MS (16%), but at a lower rate compared to those patients with three or more MRI lesions (51%).
From the other perspective, however, almost half (44%) of patients with any demyelinating lesions on MRI at presentation will not have developed MS ten years later.[1][2][3][4]
Some other causes of optic neuritis include infection (e.g. syphilis, Lyme disease, herpes zoster), autoimmune disorders (e.g. lupus), inflammatory bowel disease, drug induced (e.g. chloramphenicol, ethambutol) vasculitis and diabetes..........."
If you haven't yet got your hands on the MRI report, i would and i'd also go to your general dr and get tested for the other causes of ON, and if I was in your situation i'd probably also ask for a referal for a second opinion with a neurologist that specialises in MS or a neuro-opthalmologist.
Cheers.........JJ
Let me see if i've got this right, you are dx with ON, had an MRI looking for lesions and the MRI did actually find 1 lighting up, on or near your optic nerve. btw these tracks cross over so the lesion being in the opposite side to the 'bad' eye is to be expected.
I (lol my bad habbit) have a few questions:
1 Did the MRI find any other lesions, ones that didn't light up?
2 Is this neuro one that specialises in MS or a general neuro?
3 Did he/she mention clinical isolated syndrome (CIS)?
4 Apart from the sx relating to the ON what if any, other sx do you have?
5 What other possible causes of the ON have been investigated?
If you look at ON its commonly associated with MS, but there are other less common causes [see wiki for basics, below is an expert]
"The most common etiology is multiple sclerosis. Up to 50% of patients with MS will develop an episode of optic neuritis, and 20-30% of the time optic neuritis is the presenting sign of MS. The presence of demyelinating white matter lesions on brain MRI at the time of presentation of optic neuritis is the strongest predictor for developing clinically definite MS.
Almost half of the patients with optic neuritis have white matter lesions consistent with multiple sclerosis. At five years follow-up, the overall risk of developing MS is 30%, with or without MRI lesions. Patients with a normal MRI still develop MS (16%), but at a lower rate compared to those patients with three or more MRI lesions (51%).
From the other perspective, however, almost half (44%) of patients with any demyelinating lesions on MRI at presentation will not have developed MS ten years later.[1][2][3][4]
Some other causes of optic neuritis include infection (e.g. syphilis, Lyme disease, herpes zoster), autoimmune disorders (e.g. lupus), inflammatory bowel disease, drug induced (e.g. chloramphenicol, ethambutol) vasculitis and diabetes..........."
If you haven't yet got your hands on the MRI report, i would and i'd also go to your general dr and get tested for the other causes of ON, and if I was in your situation i'd probably also ask for a referal for a second opinion with a neurologist that specialises in MS or a neuro-opthalmologist.
Cheers.........JJ
has he offered to do an MRI for you to put your mind at ease? have you had any other symptoms that sound like MS or mimic is?
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