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Neuro visit, Brain MRI results
I had my neuro appointment. Not that great. He looked at the films, and stated that he couldn't find the on picture they were referring to, so he believed it to be a typing/dictation error. Found one small spot on the contrast film, but the report read that there was one spot in the right frontal region, but could be artifactual, repeat MRI in 2 - 4 weeks.
He said that he believed it was nothing more than a snap shot of blood flow, though it was not a symetrical spot (not on the left, only on the right), and there were two other areas that were symetrical, so he didn't feel they were anything.
He told me to try to exercise, anything at all, and use a fast acting low dose pain killer called Phenyline. I don't know if I spelt that right. He also gave me Cymbalta, stating it is an anti-depression drug, but is also used for nerve pain. It couldn't hurt either way.
He said the damage that was done by the virus is done. This wonderful mysterious virus (HSV-1), I believe is the one he is referring to. He said that there is nothing else we can do but let it run it's course, since it is on the last leg. If it's on its last leg, why is MY leg getting worse. I want to know that.
He still wants the repeat MRI from the same imaging facility and the EEG. My aunt went with me, and for the first time, I was less than impressed with my neuro. He spoke to her, instead of me. I felt like the little kid again. It was horrible. I was just scared about the whole inflammation and the brain. It's like spine one thing, brain another story. I felt like I just didn't get any answers and more of a brush off than before
He was looking for the Western Blot Lyme test, but I called the lab and found out that they don't run it by protocol if the Elisa test is negative, even if it is on the order. The test was never run. I don't know, the first time it was done, I had one positive band, and now because the Elisa test is still negative, the second lab wouldn't run the test. The doctor said that this is not Lymes because you need two bands and one is not enough to assume Lymes. Am I wrong in thinking one band positive ever is something to be concerned about, especially with the symptoms I have?
Today, after the appointment, I get a phone call from the ob/gyn. I have a 2cm ovarian cyst, and that's why I've been having such horrible pain. She said it might have ruptured with my period, though they don't think it did, because I wasn't in enough pain. Enough pain, get that. She said the only way they coudl treat it was with birth control pills or pain management and watching it to be sure it didn't get bigger. They won't give me birth control pills because of the problems I've been having, the neuro took me off of them. I was having more problems with it than without it. I have always had problems with birth control pills, and this is the second cyst. Both occurring after trying birth control pills and having adverse reactions. I still have an appointment at Penn Hospital with a neuromuscular disease specialist. Hopefully she can help me out.
Any suggestions on exercise that doesn't include abs or your heels? I'm kind of lost if it isn't weight training, biking, running, or swimming. I can swim, but not that often because of my ear (the permanent case of swimmers ear that started a week and a half ago, and isn't going away).
He said that he believed it was nothing more than a snap shot of blood flow, though it was not a symetrical spot (not on the left, only on the right), and there were two other areas that were symetrical, so he didn't feel they were anything.
He told me to try to exercise, anything at all, and use a fast acting low dose pain killer called Phenyline. I don't know if I spelt that right. He also gave me Cymbalta, stating it is an anti-depression drug, but is also used for nerve pain. It couldn't hurt either way.
He said the damage that was done by the virus is done. This wonderful mysterious virus (HSV-1), I believe is the one he is referring to. He said that there is nothing else we can do but let it run it's course, since it is on the last leg. If it's on its last leg, why is MY leg getting worse. I want to know that.
He still wants the repeat MRI from the same imaging facility and the EEG. My aunt went with me, and for the first time, I was less than impressed with my neuro. He spoke to her, instead of me. I felt like the little kid again. It was horrible. I was just scared about the whole inflammation and the brain. It's like spine one thing, brain another story. I felt like I just didn't get any answers and more of a brush off than before
He was looking for the Western Blot Lyme test, but I called the lab and found out that they don't run it by protocol if the Elisa test is negative, even if it is on the order. The test was never run. I don't know, the first time it was done, I had one positive band, and now because the Elisa test is still negative, the second lab wouldn't run the test. The doctor said that this is not Lymes because you need two bands and one is not enough to assume Lymes. Am I wrong in thinking one band positive ever is something to be concerned about, especially with the symptoms I have?
Today, after the appointment, I get a phone call from the ob/gyn. I have a 2cm ovarian cyst, and that's why I've been having such horrible pain. She said it might have ruptured with my period, though they don't think it did, because I wasn't in enough pain. Enough pain, get that. She said the only way they coudl treat it was with birth control pills or pain management and watching it to be sure it didn't get bigger. They won't give me birth control pills because of the problems I've been having, the neuro took me off of them. I was having more problems with it than without it. I have always had problems with birth control pills, and this is the second cyst. Both occurring after trying birth control pills and having adverse reactions. I still have an appointment at Penn Hospital with a neuromuscular disease specialist. Hopefully she can help me out.
Any suggestions on exercise that doesn't include abs or your heels? I'm kind of lost if it isn't weight training, biking, running, or swimming. I can swim, but not that often because of my ear (the permanent case of swimmers ear that started a week and a half ago, and isn't going away).
Thank you all so much for your support. I'm sorry everyone here has to be going through this.
Individual questions answered now.
uk2: I was checked for a heel spur at the ER. It was not it. They sent me home with a pain killer, that I had a reaction to, and told me it was plantar fascitis. I brought this up with the neuro and my chiropractor, and both are in agreement that it is indeed not plantar fascitis, but neurological connected with the inflammation type symptoms I've been experiencing.
Doni: I know what you mean about the talking part. I get torn back and forth with the whole exercise through it deal. I know my family believes something else is going on, because I used to be Ms. Fitness. Everything was about fitting time in for the gym, even finding a job I could leave early, or be bored to death in so I knew I would get out at x time to make it to the gym. Now it is so hard to exercise, but I'm going to keep trying. I did the timeline that Quix suggested, and that's how I got the Brain MRI ordered in the first place. He is going to continue through with testing though, so it wasn't a complete dismissal, just a disappointment.
Pat: It must have been an O-band, because the neuro told me I needed two for a diagnosis. My nuero is proceeding with Lyme's testing. He ordered both tests, but the lab only performed one. When I spoke to the lab, they told me that was standard protocol and the doctor should have known this. He stated that they were both on the prescription for both to be run, and had a copy of the prescription to prove he did what he said and the lab didn't do the test. The PT, I dont' know. My chiropractor used to give me some PT work, but she said there is so much inflammation she can't even get me into a state to put me in rehab for my back problems. She's trying though. I started laser therapy, which helps a lot, but doesn't last more than a few days.
Jazzy: I get why they don't want to understand, but it is still so hard. Many of my friends are martial artists, and they battle through broken ones and dislocated joints, and they don't understand why I can battle through a "little" muscle pain. I don't know, I'm not crazy. And it's harder with muscles than with bones, maybe. At least that's what I say, since they couldn't or wouldn't do the triathlons and marathons I did.
Individual questions answered now.
uk2: I was checked for a heel spur at the ER. It was not it. They sent me home with a pain killer, that I had a reaction to, and told me it was plantar fascitis. I brought this up with the neuro and my chiropractor, and both are in agreement that it is indeed not plantar fascitis, but neurological connected with the inflammation type symptoms I've been experiencing.
Doni: I know what you mean about the talking part. I get torn back and forth with the whole exercise through it deal. I know my family believes something else is going on, because I used to be Ms. Fitness. Everything was about fitting time in for the gym, even finding a job I could leave early, or be bored to death in so I knew I would get out at x time to make it to the gym. Now it is so hard to exercise, but I'm going to keep trying. I did the timeline that Quix suggested, and that's how I got the Brain MRI ordered in the first place. He is going to continue through with testing though, so it wasn't a complete dismissal, just a disappointment.
Pat: It must have been an O-band, because the neuro told me I needed two for a diagnosis. My nuero is proceeding with Lyme's testing. He ordered both tests, but the lab only performed one. When I spoke to the lab, they told me that was standard protocol and the doctor should have known this. He stated that they were both on the prescription for both to be run, and had a copy of the prescription to prove he did what he said and the lab didn't do the test. The PT, I dont' know. My chiropractor used to give me some PT work, but she said there is so much inflammation she can't even get me into a state to put me in rehab for my back problems. She's trying though. I started laser therapy, which helps a lot, but doesn't last more than a few days.
Jazzy: I get why they don't want to understand, but it is still so hard. Many of my friends are martial artists, and they battle through broken ones and dislocated joints, and they don't understand why I can battle through a "little" muscle pain. I don't know, I'm not crazy. And it's harder with muscles than with bones, maybe. At least that's what I say, since they couldn't or wouldn't do the triathlons and marathons I did.
I would have been banging my head with the speaking at your aunt and not yourself. Good grief.
Oh my goodness do I know what you mean about the family and friends acting this way.
My closest friend, I rarely tell her what is happening (and she is the one I wish I could talk to the most) she dismisses anything I tell her. Finally I just stopped telling her much of anything at all. In her opinion, this should have been like the flu.. (exaggeration, but you know my point).. I should have had it, gotten over it, and then back to my normal life.
How can you tell these people that if you could have your wish, that is what would have happened. Why can't they understand that?
Take care
Jazzy
Oh my goodness do I know what you mean about the family and friends acting this way.
My closest friend, I rarely tell her what is happening (and she is the one I wish I could talk to the most) she dismisses anything I tell her. Finally I just stopped telling her much of anything at all. In her opinion, this should have been like the flu.. (exaggeration, but you know my point).. I should have had it, gotten over it, and then back to my normal life.
How can you tell these people that if you could have your wish, that is what would have happened. Why can't they understand that?
Take care
Jazzy
I'm sorry your appt didn't go like expected. :(
I don't get why the lab didn't run the Western Blot if it was ordered?! Is the "one band" you're referring to an "O-band"? I've read that less than 2 O-bands is "negative" as far as looking for MS (and I guess Lymes as well?). Is that why your neuro not proceeding with the Lymes testing?
So sorry about the cyst. Hopefully the pain meds they gave you will help!
I don't understand why you can't get PT ordered, especially with the physical issues that you are experiencing!! I hope the neuromuscular doc can order that for you and perhaps give you some answers that you're not getting with your current doc! When is your appt?
Take care and please don't apologize for "venting". That's what we're all here for!!
Pat :)
I don't get why the lab didn't run the Western Blot if it was ordered?! Is the "one band" you're referring to an "O-band"? I've read that less than 2 O-bands is "negative" as far as looking for MS (and I guess Lymes as well?). Is that why your neuro not proceeding with the Lymes testing?
So sorry about the cyst. Hopefully the pain meds they gave you will help!
I don't understand why you can't get PT ordered, especially with the physical issues that you are experiencing!! I hope the neuromuscular doc can order that for you and perhaps give you some answers that you're not getting with your current doc! When is your appt?
Take care and please don't apologize for "venting". That's what we're all here for!!
Pat :)
I am sorry your apt was such a disappointment. I haven't started any of the intense tests or had an MRI yet, just blood tests.
Everyday I feel more sure that my problems are MS, but I know I have a long way to go before dx. I'm just trying now to take care of myself and avoid things that make my symtoms worse. Heat, being a major problem for me, is difficult to avoid as we have had temps over 100 for the past 6 days and today is forecast for 105.
I completely understand how you feel as I also have many of the symtoms you describe. Some days you just want to throw your hands up and say to **** with it!!!!!! But none of us can do that cause we all want to feel better and find out a definite dx whether it be MS or something else. No one knows but us how we feel and no one knows our own bodies like we do. It is very frustrating to have a Dr try to tell us that we can't be feeling the way we are cause they don't find a cause.
After realizing I might be having MS symptoms and finding this site I started a time line like Quix and Wanna suggested. I didn't realize how long I had been having these problems until I really started writing things down. I have been to the doctor many times over the years for - unexplained fatigue, weakness in arms and legs, migraines, and many other symtoms. Everytime, I was told there was nothing wrong with me. I knew they were wrong, but I just kept moving ahead until this year when my symptoms have gotten so bad I can hardly make it thru the day. I'm not taking a fluff off this time, I intend to pursue a dx no matter how many drs I have to go thru to get it!!!!!!
I also understand about your family. My husband, daughter (24), son (21) love me completely, but sometimes I have lots of trouble making conversation and sometimes just don't have the energy for the struggle it takes to talk, and they get really aggravated with me. I never talk to them about how I am feeling except maybe to say I'm tired. Everytime I have tried to explain to them about how I hurt or that my legs won't work, etc, they just don't want to hear it. That is why this forum is so important to me. You poor guys have to listen to me moan and groan cause I just won't do it in front of my family. Thanks to all of you for your support and understanding!!!!!!!!!
Take care of yourself and know that I and everyone else on this forum is here to support you and help you in anyway we possibly can, you are not alone!!!!
I hope you feel better soon and that your next apt will be more productive.
Bless you
Doni
Everyday I feel more sure that my problems are MS, but I know I have a long way to go before dx. I'm just trying now to take care of myself and avoid things that make my symtoms worse. Heat, being a major problem for me, is difficult to avoid as we have had temps over 100 for the past 6 days and today is forecast for 105.
I completely understand how you feel as I also have many of the symtoms you describe. Some days you just want to throw your hands up and say to **** with it!!!!!! But none of us can do that cause we all want to feel better and find out a definite dx whether it be MS or something else. No one knows but us how we feel and no one knows our own bodies like we do. It is very frustrating to have a Dr try to tell us that we can't be feeling the way we are cause they don't find a cause.
After realizing I might be having MS symptoms and finding this site I started a time line like Quix and Wanna suggested. I didn't realize how long I had been having these problems until I really started writing things down. I have been to the doctor many times over the years for - unexplained fatigue, weakness in arms and legs, migraines, and many other symtoms. Everytime, I was told there was nothing wrong with me. I knew they were wrong, but I just kept moving ahead until this year when my symptoms have gotten so bad I can hardly make it thru the day. I'm not taking a fluff off this time, I intend to pursue a dx no matter how many drs I have to go thru to get it!!!!!!
I also understand about your family. My husband, daughter (24), son (21) love me completely, but sometimes I have lots of trouble making conversation and sometimes just don't have the energy for the struggle it takes to talk, and they get really aggravated with me. I never talk to them about how I am feeling except maybe to say I'm tired. Everytime I have tried to explain to them about how I hurt or that my legs won't work, etc, they just don't want to hear it. That is why this forum is so important to me. You poor guys have to listen to me moan and groan cause I just won't do it in front of my family. Thanks to all of you for your support and understanding!!!!!!!!!
Take care of yourself and know that I and everyone else on this forum is here to support you and help you in anyway we possibly can, you are not alone!!!!
I hope you feel better soon and that your next apt will be more productive.
Bless you
Doni
My friends can be like that too had my MRI yesterday and as i have to wait for 3 weeks till i get the results there all like well at least it is not serious then!! it feels serious to me but like you said you cant see most of the sx. Im sorry about your neuro maybe this new dc will have some answers for you.
my dc went down the line of the SPV being linked to my neuro probs but mine was a different type to yours (if you get my drift) and the neuro said it was too low to cause all the other sx i have.
I have heel and ankle pain and low back pain and know where you are coming from.
Have you checked to see if you have a heel spear think thats how you spell it i have thought about that but my heel pain is on the side of the foot along with nerve pain in the side of the ankle and a unexplained hard swelling almost like a new muscle odd!!
I hope you stay feeling better and some answers come soon.
my dc went down the line of the SPV being linked to my neuro probs but mine was a different type to yours (if you get my drift) and the neuro said it was too low to cause all the other sx i have.
I have heel and ankle pain and low back pain and know where you are coming from.
Have you checked to see if you have a heel spear think thats how you spell it i have thought about that but my heel pain is on the side of the foot along with nerve pain in the side of the ankle and a unexplained hard swelling almost like a new muscle odd!!
I hope you stay feeling better and some answers come soon.
Thanks for the question, I"m seeing a new doctor next weeka nd that make me think about all of it. Good thing to take with me and my timeline.
I have been tested for so many, but the one I believe he is referring to is Herpes Simplex Virus Type I, which is the one that causes cold sores. 95% of the population has this virus or antibodies for this virus in them, but it has been shown to cause neurological damage in rare occurrences.
I have numbness rotating with heaviness in my left leg, and now sometimes in the right. I get a burning sensation across my incision, following the leg line on the left side. I also have extreme abdominal pain for two weeks surrounding my cycle. Every once in awhile my left hand will turn blue from nothing, or I'll get severe pain through my forearm, almost like someone was squeezing my arm as hard as they possibly could. I have severe heel pain in the left leg, that for 4 weeks was near constant, but starting to get better now. I have back pain, and can't lift my arms above my shoulder without shooting pain down my spine. I recently started getting headaches, almost like a tension headache, but worse. I also started witht he vision problems where every time I leave a room or get up really fast, I see a flash of color that goes away almost as fast as it came. My ears ring, and sometimes the hearing in my left ear goes out, feels like a swimmers ear problem, but nothing seems to work to clear it. I also have extreme muscle fatigue. I have an 8 month old at home, adnd I know they can make you tired, but that's not the kind of tired I am. My muscles feel like I ran a marathon sometimes, or my arms like a swam miles. This all comes and goes, right now I'm starting to feel a lot better, but sometimes it gets worse. When I try to "overdo" it, it's horrible. Cleaning or standing for too long hurts my back. The heel pain was exacerbated when I tried to go for a short jog. Seems every time I try to exercise I overdo it to the point where I can't do anything for a few weeks. And then, I try again. They won't give me a physical therapist, which I would love to make sure I'm doing the right exercises at the right pace so I'm not "overdoing it". Or at least can take that excuse out of the equation.
It's just the Lyme checklist matched me so much better than anything else, even MS. And it's not unlikely, I'm in Jersey, we are tick central, and I was Ms. Outdoors. I ran in the woods, I was always outside, and it's a lot of woods out here.
I have numbness rotating with heaviness in my left leg, and now sometimes in the right. I get a burning sensation across my incision, following the leg line on the left side. I also have extreme abdominal pain for two weeks surrounding my cycle. Every once in awhile my left hand will turn blue from nothing, or I'll get severe pain through my forearm, almost like someone was squeezing my arm as hard as they possibly could. I have severe heel pain in the left leg, that for 4 weeks was near constant, but starting to get better now. I have back pain, and can't lift my arms above my shoulder without shooting pain down my spine. I recently started getting headaches, almost like a tension headache, but worse. I also started witht he vision problems where every time I leave a room or get up really fast, I see a flash of color that goes away almost as fast as it came. My ears ring, and sometimes the hearing in my left ear goes out, feels like a swimmers ear problem, but nothing seems to work to clear it. I also have extreme muscle fatigue. I have an 8 month old at home, adnd I know they can make you tired, but that's not the kind of tired I am. My muscles feel like I ran a marathon sometimes, or my arms like a swam miles. This all comes and goes, right now I'm starting to feel a lot better, but sometimes it gets worse. When I try to "overdo" it, it's horrible. Cleaning or standing for too long hurts my back. The heel pain was exacerbated when I tried to go for a short jog. Seems every time I try to exercise I overdo it to the point where I can't do anything for a few weeks. And then, I try again. They won't give me a physical therapist, which I would love to make sure I'm doing the right exercises at the right pace so I'm not "overdoing it". Or at least can take that excuse out of the equation.
It's just the Lyme checklist matched me so much better than anything else, even MS. And it's not unlikely, I'm in Jersey, we are tick central, and I was Ms. Outdoors. I ran in the woods, I was always outside, and it's a lot of woods out here.
Sorry about your appt. I know how frustrating it can be to not be heard. Sometimes my family is the same way. None of my symptoms can be seen by others. They are all silent, so it is very hard sometimes to explain to family what I'm going through. If they can't see it, it makes it harder for them to believe it I guess.
What kind of virus did you have??? What are the symptoms you have??? I almost think my problems are virus related or Lymes as well.
Take care.
Skarey
What kind of virus did you have??? What are the symptoms you have??? I almost think my problems are virus related or Lymes as well.
Take care.
Skarey
Don't feel bad for venting. We do understand. I also understand your family's reaction. I'm sure some of it is denial. And, people are so use to doctors giving quick answers. You go to the doctor because your sick, he runs a test, tells you what's wrong, and gives you a pill to make it better. That's the way it is a lot of the time, and people have a hard time understanding how a doctor can't tell you what is wrong. And sometimes they think that if he can't, nothing must be wrong.
I'm getting ready to see my 7th neuro!!! It has been unbelievable. It is good that this neruo is willing to do a follow up MRI. Is he willing to follow you too? That has been the hardest thing for me to find.
Hang in there. Things will get better.
I'm getting ready to see my 7th neuro!!! It has been unbelievable. It is good that this neruo is willing to do a follow up MRI. Is he willing to follow you too? That has been the hardest thing for me to find.
Hang in there. Things will get better.
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