Aa
Do I need a 3rd opinion NOW or do I just wait and see?
I have a history of trigeminal neuralgia. In May I started Optic Neuritis, extreme fatigue, weakness in my arms and legs, especially my right leg,odd tingling in legs and feet.
My ON was dx'd by an MRI. I was sent to a neurologist because the radiologist said I had two spots of demyelnation in the poterior frontal lobe white matter of my brain.
Saw Neurologist #1. She did a c-spine (it was clear) SER (ok) BEAR (ok) VER (abnormal =optic neuritis).
Neuro # 1 says Not MS. Spots on MRI are probably from high bp.
Wanted second opinion.
Neuro #2 looked over all of the films, reports, and notes. Did a really good exam. Said, " You have migranes" Yes, optical migraines.
"Spots are not demyelnation but from migranes" "Radiologist is nuts" She didn't really say "nuts" but I could tell she was thinking that!
She said she did not know what my ON was caused from. Maybe a virus. Said I do have problems with my right leg. Well, YES, I do! Glad she noticed.
Noted that I have a history of TN and an aunt with MS. Said that MS is not causing ON but I do need to be followed by a Neurologist and need another MRI in a year.
She said she did not feel she should start me on any meds for MS because I do not have lesions.
I was so HAPPY!! But I know ON can be a presenting sign even though nothing is showing on my MRI to support MS right now. Then there is the history of possible TN. I say"possible" because I did not take the meds my doctor wanted me to take. He said taking an anti-sezuire medication was the only sure way for him to know if it is TN or not. If the medication helped then he would know it was Tn.
I know it was TN just from the symptoms and unbelieveable pain! It started up again when I started ON this spring. However, the TN pain did not get out of control this time.
Do I go for yet another opinion? Or do I wait this out? I want to trust both of these doctors.
Neither of them are listed as MS specialists. The clinic my doctor wanted me to go to is not on my insurance plan.
I want to have total peace with this. I want to go on and forget it. But it has been too odd. This all started in May. My eye sight has improved a great deal in the past 3 weeks. And I am even feeling much better. This all started 4 months ago.
Actually the very first thing I noticed was I could not follow the music and play the piano! I can play just a little bit. Took 2 years of lessons. I like to play songs for the kids. One day I sat down to play and I had a horrible time. I wondered then what was going on. Within 2 weeks I started ON.
I am even starting to feel a little more back to my normal self. My leg is still goofy though.
The doctor said I should find out if I have a problem with my lower back.
Has anyone had ON, had it brushed off, but then go on to be dx'd with MS at a later date? I am so worried about that happening to me.
How odd to have started with trigeminal neuralgia 4 years ago, now optic neuritis.
The one thing that does give me a bit of hope is I had a brain MRI done 6 years ago. It was totally clean.
The new MRI had two spots but the doctors say high bp or migraines caused them. I do NOT get migrane headaches, just occular migranes. Also, my bp has been well controlled.
Should I get a 3rd opinion or wait out my year?
L
My ON was dx'd by an MRI. I was sent to a neurologist because the radiologist said I had two spots of demyelnation in the poterior frontal lobe white matter of my brain.
Saw Neurologist #1. She did a c-spine (it was clear) SER (ok) BEAR (ok) VER (abnormal =optic neuritis).
Neuro # 1 says Not MS. Spots on MRI are probably from high bp.
Wanted second opinion.
Neuro #2 looked over all of the films, reports, and notes. Did a really good exam. Said, " You have migranes" Yes, optical migraines.
"Spots are not demyelnation but from migranes" "Radiologist is nuts" She didn't really say "nuts" but I could tell she was thinking that!
She said she did not know what my ON was caused from. Maybe a virus. Said I do have problems with my right leg. Well, YES, I do! Glad she noticed.
Noted that I have a history of TN and an aunt with MS. Said that MS is not causing ON but I do need to be followed by a Neurologist and need another MRI in a year.
She said she did not feel she should start me on any meds for MS because I do not have lesions.
I was so HAPPY!! But I know ON can be a presenting sign even though nothing is showing on my MRI to support MS right now. Then there is the history of possible TN. I say"possible" because I did not take the meds my doctor wanted me to take. He said taking an anti-sezuire medication was the only sure way for him to know if it is TN or not. If the medication helped then he would know it was Tn.
I know it was TN just from the symptoms and unbelieveable pain! It started up again when I started ON this spring. However, the TN pain did not get out of control this time.
Do I go for yet another opinion? Or do I wait this out? I want to trust both of these doctors.
Neither of them are listed as MS specialists. The clinic my doctor wanted me to go to is not on my insurance plan.
I want to have total peace with this. I want to go on and forget it. But it has been too odd. This all started in May. My eye sight has improved a great deal in the past 3 weeks. And I am even feeling much better. This all started 4 months ago.
Actually the very first thing I noticed was I could not follow the music and play the piano! I can play just a little bit. Took 2 years of lessons. I like to play songs for the kids. One day I sat down to play and I had a horrible time. I wondered then what was going on. Within 2 weeks I started ON.
I am even starting to feel a little more back to my normal self. My leg is still goofy though.
The doctor said I should find out if I have a problem with my lower back.
Has anyone had ON, had it brushed off, but then go on to be dx'd with MS at a later date? I am so worried about that happening to me.
How odd to have started with trigeminal neuralgia 4 years ago, now optic neuritis.
The one thing that does give me a bit of hope is I had a brain MRI done 6 years ago. It was totally clean.
The new MRI had two spots but the doctors say high bp or migraines caused them. I do NOT get migrane headaches, just occular migranes. Also, my bp has been well controlled.
Should I get a 3rd opinion or wait out my year?
L
Thank you. I wanted so badly to hear I did not have MS. The neuro said she did not believe MS was causing ON, but could not rule it out completely. She said I need to be watched and have another MRI in July. She said if no lesions are evident then, she would give me a 100% clear on MS. I do have a clear c-spine MRI. That is good. She did not do anything lower on my back.
Yes, I still have concern about the spots on my MRI. They were not there 6 years ago. I have not had a migrane in the past 6 years. I do have occular migraines. But she herself said an occular migrane will not cause spots.
Then there is the question of BP. But my BP is very well controlled. It has never been higher than 140/100 and I am on medication. It just does not add up for me yet. But, as with you, time will tell the story.
L
Yes, I still have concern about the spots on my MRI. They were not there 6 years ago. I have not had a migrane in the past 6 years. I do have occular migraines. But she herself said an occular migrane will not cause spots.
Then there is the question of BP. But my BP is very well controlled. It has never been higher than 140/100 and I am on medication. It just does not add up for me yet. But, as with you, time will tell the story.
L
I'm glad you are getting releif and your symptoms are improving.
I had ON and lumbar lesions in 1998,brushed it off ,The DR told me I had MS,then they didn't have the info they have today.But this Dr never followed uo with it either.I did not know I had ON or lumbar lesions until I requested my medical records.
Okay my stupid brain has just gotten a head of me.I had a back surgery in 1998 and couldn't walk afterwards,had very bad eye pain,they ran test and it came back transverse myelitis,the surgery was tramatic and it woke the MS up apparently.My surgeon never explained his findings and so forth.
Well come september 2004 I was having similiar symptoms that I had had in 1998.Well after the idiot,defective Drs I seen ,3 spine Drs,a neuro muscular DR,eye dr,opthamologist,ent,a neuro ent,electro -muscular dr.and yes I'm on my 5th neuro(last one is missing in action).They Dx finally come.
Now that this honkin disease has progresses and all the hoops I jumped,I'm sitting here with disabilities from it.
The only advice I can give is,if you see symptoms reappearing,new ones starting,get another opinion.I'm with quix,to many neuro's use text book pictures to DX this darn disease.Many can relate to what you have been through.Try to see a MS specialist when you can.Them 4 children definatly need you
I had ON and lumbar lesions in 1998,brushed it off ,The DR told me I had MS,then they didn't have the info they have today.But this Dr never followed uo with it either.I did not know I had ON or lumbar lesions until I requested my medical records.
Okay my stupid brain has just gotten a head of me.I had a back surgery in 1998 and couldn't walk afterwards,had very bad eye pain,they ran test and it came back transverse myelitis,the surgery was tramatic and it woke the MS up apparently.My surgeon never explained his findings and so forth.
Well come september 2004 I was having similiar symptoms that I had had in 1998.Well after the idiot,defective Drs I seen ,3 spine Drs,a neuro muscular DR,eye dr,opthamologist,ent,a neuro ent,electro -muscular dr.and yes I'm on my 5th neuro(last one is missing in action).They Dx finally come.
Now that this honkin disease has progresses and all the hoops I jumped,I'm sitting here with disabilities from it.
The only advice I can give is,if you see symptoms reappearing,new ones starting,get another opinion.I'm with quix,to many neuro's use text book pictures to DX this darn disease.Many can relate to what you have been through.Try to see a MS specialist when you can.Them 4 children definatly need you
Ok, so I am NOT goofy for still wondering. I am feeling better recently. Even my leg is coming along much better. We will be able to change our insurance in November. It will take effect in January. I am going to make an appointment with the Ms clinic and I know it will be at least a couple of months before I can get in.
I am having a hard time finding peace with what both of these doctors said. I hate to be chasing problems where there may not really be a problem. If it were not to the ON and TN I would be a lot more at ease with all of this. Having MS in the family scares me. The doctor even took a pause when she saw there was MS in the family. She was about to tell me to go and don't worry, but she stared reading some of my history and said, "OH! you have an aunt with MS?" Yes. She told me then I needed to be followed by a neurologist.
So, for now I am feeling so much better. I can't believe what I have been through the past 4 months. I have been sick before. Had Mono, sinus infections, nasty flu......I know what sick is. This was not your normal "sick". I was not ill. I still had the desire to do things. Still wanted to eat. But I could hardly function. I struggled at times just getting a whole thought out of my mouth. And yes, the fatigue was so awful. My energy level is coming back up. I feel like I can comprehend things again. Which is very important because I am the coordinatior and full time care giver to 4 children with special needs who need therapies, doctors, specialists, daily medications, special attention at school.....I HAVE to be able to function. That is the scary part.
Thanks for your help. I will get that appointment made!
L
I am having a hard time finding peace with what both of these doctors said. I hate to be chasing problems where there may not really be a problem. If it were not to the ON and TN I would be a lot more at ease with all of this. Having MS in the family scares me. The doctor even took a pause when she saw there was MS in the family. She was about to tell me to go and don't worry, but she stared reading some of my history and said, "OH! you have an aunt with MS?" Yes. She told me then I needed to be followed by a neurologist.
So, for now I am feeling so much better. I can't believe what I have been through the past 4 months. I have been sick before. Had Mono, sinus infections, nasty flu......I know what sick is. This was not your normal "sick". I was not ill. I still had the desire to do things. Still wanted to eat. But I could hardly function. I struggled at times just getting a whole thought out of my mouth. And yes, the fatigue was so awful. My energy level is coming back up. I feel like I can comprehend things again. Which is very important because I am the coordinatior and full time care giver to 4 children with special needs who need therapies, doctors, specialists, daily medications, special attention at school.....I HAVE to be able to function. That is the scary part.
Thanks for your help. I will get that appointment made!
L
Hi, Again. As you probably saw, I got all embroiled again in a controversy and got all lathered up and upset. Sorry.
Why is it that you have neurological symptoms, so you go to a doctor and they say, "Hmmmm.... I'm worried that you might have something wrong on your brain. You now have had problems with two cranial nerves. We should look at your brain and spine (especially the brainstem) to see if there are any spots. Let's do an MRI and see if there are any spots."
So they do this wondrous MRI that can show spots that could mean a problems causing these neurological symptoms. The MRI has SPOTS!!! Lo! and Behold!! .... but....they say,
"Oh,..Those spots, they can't be important. They must be from high blood pressure, or migraines or OLD AGE. Certainly, looking for spots and finding them could have no correlation to this person's problems. Besides, I have a picture of an MRI of a person with MS in this here textbook and the spots have to be Here, and HERE!"
Okay, enough of the sarcasm, but I do hope it was amusing.
Has anyone had ON, brushed it off, and had MS develop later? About 42% of those people having ON. And several of the people posting here. Lynn was one. We have several others. I had just one lesion and it was the right size and shape, but it was in the wrong place. Mine was just one lesion in the "frontal lobe." And it was my first MS lesion (and so far the only one in my brain) MS lesions do not have to be in the prescribed places, it's just easier to diagnose if they are.
Your leg was wonky, your eyes were wonky and now you have lesions that weren't there before. Your fatigue is better. There is some association in some studies (not firm) that frontal lobe lesions have a correlation with the fatigue. Interesting, eh? Before a lesion becomes the right size and shape, it starts out small, even invisible to the MRI. Then, as it grows and develops, it is "punctate." That means a small spot. That is what the lesions of high BP and migraines look like. Then it may grow into what is known as a plaque. It is a process. It isn't like one day there is no problem and the next day there is a full-grown plaque - all perfect and clear and ovoid.
Yes, it is possible that you have had some extremely strange neurologic process causing two of your cranial nerves to malfunction, your leg to spasm and stop working and you to be too fatigued to care for your family. But, we are to believe and be guaranteed that it is a one-time thing. As a physician, that sounds like very loose and poorly thought out reasoning. Knowing that you have a high chance (ON plus brain lesions) of having MS makes me want to know as soon as possible. Disease Modifying Drugs can prolong your time healthy and able to be the mom to your kids that you want to be.
In matters of this importance, I don't think a third opinion is out of line at all. But, waiting until you have coverage for the MS clinic your PCP wants you to see isn't out of line either. It's only a couple months. I see that as a good option, especially since you are becoming more functional now.
Fishy is right. You need someone who is capable of connecting the dots. I don't think your current neuro can even find his crayons. It is frustrating. I'm frustrated right along with all of you. The only disease that I know of that can cause problems with the cranial nerves like this is Lyme disease. Bells Palsy is the most common, but TN and ON are also described. Make sure you have been properly tested.
You and ncowleyc have an amazing amount in common. Have you checked? Maybe you're the same person!! Who'd a thunk it!
I think I'm babbling at this point. Sorry. I don't know if this ranting was helpful or not, but I hope you found it entertaining.
Kitty Hickies coming your way. Love those kids up. Quix
Why is it that you have neurological symptoms, so you go to a doctor and they say, "Hmmmm.... I'm worried that you might have something wrong on your brain. You now have had problems with two cranial nerves. We should look at your brain and spine (especially the brainstem) to see if there are any spots. Let's do an MRI and see if there are any spots."
So they do this wondrous MRI that can show spots that could mean a problems causing these neurological symptoms. The MRI has SPOTS!!! Lo! and Behold!! .... but....they say,
"Oh,..Those spots, they can't be important. They must be from high blood pressure, or migraines or OLD AGE. Certainly, looking for spots and finding them could have no correlation to this person's problems. Besides, I have a picture of an MRI of a person with MS in this here textbook and the spots have to be Here, and HERE!"
Okay, enough of the sarcasm, but I do hope it was amusing.
Has anyone had ON, brushed it off, and had MS develop later? About 42% of those people having ON. And several of the people posting here. Lynn was one. We have several others. I had just one lesion and it was the right size and shape, but it was in the wrong place. Mine was just one lesion in the "frontal lobe." And it was my first MS lesion (and so far the only one in my brain) MS lesions do not have to be in the prescribed places, it's just easier to diagnose if they are.
Your leg was wonky, your eyes were wonky and now you have lesions that weren't there before. Your fatigue is better. There is some association in some studies (not firm) that frontal lobe lesions have a correlation with the fatigue. Interesting, eh? Before a lesion becomes the right size and shape, it starts out small, even invisible to the MRI. Then, as it grows and develops, it is "punctate." That means a small spot. That is what the lesions of high BP and migraines look like. Then it may grow into what is known as a plaque. It is a process. It isn't like one day there is no problem and the next day there is a full-grown plaque - all perfect and clear and ovoid.
Yes, it is possible that you have had some extremely strange neurologic process causing two of your cranial nerves to malfunction, your leg to spasm and stop working and you to be too fatigued to care for your family. But, we are to believe and be guaranteed that it is a one-time thing. As a physician, that sounds like very loose and poorly thought out reasoning. Knowing that you have a high chance (ON plus brain lesions) of having MS makes me want to know as soon as possible. Disease Modifying Drugs can prolong your time healthy and able to be the mom to your kids that you want to be.
In matters of this importance, I don't think a third opinion is out of line at all. But, waiting until you have coverage for the MS clinic your PCP wants you to see isn't out of line either. It's only a couple months. I see that as a good option, especially since you are becoming more functional now.
Fishy is right. You need someone who is capable of connecting the dots. I don't think your current neuro can even find his crayons. It is frustrating. I'm frustrated right along with all of you. The only disease that I know of that can cause problems with the cranial nerves like this is Lyme disease. Bells Palsy is the most common, but TN and ON are also described. Make sure you have been properly tested.
You and ncowleyc have an amazing amount in common. Have you checked? Maybe you're the same person!! Who'd a thunk it!
I think I'm babbling at this point. Sorry. I don't know if this ranting was helpful or not, but I hope you found it entertaining.
Kitty Hickies coming your way. Love those kids up. Quix
I saw I was sinking towards the bottom of the page. Decided to give myself a bump! I am really interested in what Quix has to say.
L
L
Ok thanks so much. I am just wondering what to do right now. Do I wait and see what happens? Do I go to another doctor? The machine I had my MRI was a t1 not even a t1.5. How much does that matter? How odd to have ON and TN. I just don't know now.
I am however feeling better than I was. My vision has improved so much in the past 3 weeks. Just all of a sudden things are coming back. I am not as tired as I was. The twitches and spasms I had in my leg are going away. It has been 4 months and now things are improving. I started noticing an improvement before I went to the doctor last week.
I don't know what her note back to my PCP said. I want to get a copy of it. This was not the doctor my PCP wanted me to see. He wanted me to go to the MS clinic here in our state. Our insurance does not cover it. So, we may have the opportunity to change our insurance to the plan that does cover that clinic in November.
What a merry-go-round this is. I don't want MS. I'd be just as happy to walk away and never look back. But I know that is risky because there are meds that can help me if it really is MS. UGH.........what a crazy thing to have happen. I was going along happy, minding my own business, then I am thrown into all of this. How frustrating.
l
I am however feeling better than I was. My vision has improved so much in the past 3 weeks. Just all of a sudden things are coming back. I am not as tired as I was. The twitches and spasms I had in my leg are going away. It has been 4 months and now things are improving. I started noticing an improvement before I went to the doctor last week.
I don't know what her note back to my PCP said. I want to get a copy of it. This was not the doctor my PCP wanted me to see. He wanted me to go to the MS clinic here in our state. Our insurance does not cover it. So, we may have the opportunity to change our insurance to the plan that does cover that clinic in November.
What a merry-go-round this is. I don't want MS. I'd be just as happy to walk away and never look back. But I know that is risky because there are meds that can help me if it really is MS. UGH.........what a crazy thing to have happen. I was going along happy, minding my own business, then I am thrown into all of this. How frustrating.
l
I feel a little better now. I am not the only one in this situation. And I am not being silly for having some more concerns.
The doctor didn't totally write me off. That was good. If I could go on and know this would never happen again I would be fine. But it is those What Ifs that bother me.
Both doctors insist that the spots on my MRI are NOT ms. High BP, migraine maybe, but not MS because they are not the right shape, size, and are not in the right spot.
But, I have read the post by Quix about lesions and it does make me wonder. Who knows. If I didn't have several young children I would probably be a little more comfortable just ignoring it all.
Good luck to both of you too.
L
The doctor didn't totally write me off. That was good. If I could go on and know this would never happen again I would be fine. But it is those What Ifs that bother me.
Both doctors insist that the spots on my MRI are NOT ms. High BP, migraine maybe, but not MS because they are not the right shape, size, and are not in the right spot.
But, I have read the post by Quix about lesions and it does make me wonder. Who knows. If I didn't have several young children I would probably be a little more comfortable just ignoring it all.
Good luck to both of you too.
L
Hi reading your post I was struck by the similarities to mine. Don't let the doctors brush you off. Waiting a year will make you doubt yourself even more. By then you may just let it go which could make your health suffer. It's good to catch any disease early.
I had TN then ON (presumed from symptoms) a few months later. Before I developed ON I was having trouble reading. It was like my right eye was a second slow in recognizing the words. Threw everything off. Maybe that's what was happening with the piano playing. I also kept having to turn my head to finish a sentence with my left eye. Maybe a blind spot never noticed? They also told me the two lesions on my MRI were age related. Im only 31 not 60. When things don't fit quit right then keep looking. Good luck.
I had TN then ON (presumed from symptoms) a few months later. Before I developed ON I was having trouble reading. It was like my right eye was a second slow in recognizing the words. Threw everything off. Maybe that's what was happening with the piano playing. I also kept having to turn my head to finish a sentence with my left eye. Maybe a blind spot never noticed? They also told me the two lesions on my MRI were age related. Im only 31 not 60. When things don't fit quit right then keep looking. Good luck.
Hi there. You sound like you're in a similar boat as me. I just finished the barrage of tests with two different neurologists, but everything shows negative. With your spots on your MRI, I'm confused as to why your neurologists don't connect the dots with your symptoms and the findings. Seems like that would raise all the red flags. If I were you, I'd try to find a MS-specialized neurologist and see. I know its difficult to keep going when you're tired of doctors, tests, and all the waiting and stress. But in your case, it sounds like it's worth pursuing, if only for your peace of mind.
I started out with ON seven years ago (large blind spot in right eye; color swapping red for green), and didn't have many symptoms after that until now (numb limbs and buzzing, severe heat intolerance). But even my VEP tests are showing negative now, so who knows. I need to decide on that third neurologist as well, but I'm still debating since I don't have much to go on. I'm currently collecting all my tests results and films to pass the time :). Good luck, and if you're still have those lingering doubts, keep going on those opinions. Take care!
FF
I started out with ON seven years ago (large blind spot in right eye; color swapping red for green), and didn't have many symptoms after that until now (numb limbs and buzzing, severe heat intolerance). But even my VEP tests are showing negative now, so who knows. I need to decide on that third neurologist as well, but I'm still debating since I don't have much to go on. I'm currently collecting all my tests results and films to pass the time :). Good luck, and if you're still have those lingering doubts, keep going on those opinions. Take care!
FF
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