Aa
What do you think???
Hi all,
Hope everyone is doing well. I met my new neuro today. It was at a German hospital in Wittlich, so I was really nervous about the language barrier, etc. but my doctor was super nice and spoke excellent English. I wish my German was that good. :-)
Anyway, I wanted to have you guys weigh in if you would on a few things that confused me. So, here goes ...
My MRIs weren't sent over, so he only had the reports to go on w/my symptom history and the other neuro's observations. He retested my reflexes, etc and said that I had very distinct diffences between the left side of my body and the right. Both he said had slowed and unusual reactions, but my left was extremely off. when he hit my left knee, my leg would just jiggle forever until he stopped it. And all the reflexes were off.
Then he checked my eyes and said my left eye has nystagmus. He asked if I'd had any recent eye issues and I told him yes describing what had recently cleared up from the previous several weeks. He then told me my left optic nerve was inflamed and that there seemd to be some atrophy ( can a nerve have atrophy or was he talking about some other muscle). So, he had me redo a VEP on the spot. The right eye was fine, but my left eye had definte difference and slowing in response. He said I need to see an optomalogist (sp?). He said to protect my right eye b/c it was compensating for my left eye. I asked if my left was going to get better or worse and he said not better, but he couldn't say if glasses would help it. He just kept saying I should protect my right eye to retain the sight capabilities I have now. So ... is this normal for MS or is my eye something else????
Then he said they wanted to go through with an LP and another set of MRIs. He wants to see if my MRIs have changed any since the last ones almost two years ago. He said that he was surprised I only had six lesions considering my neuro exam. I asked if that was because by the time I had those MRIs my only remaining symptom was fatigue, and would that mean the lesions weren't active or something. He said no, once a lesion is there it's there forever and will always show up ... is that true? I thought sometimes they were only there during an attack if you were in the early stages???
Lastly, I asked if we could avoid the LP because I'm absolutely terrified of needles. He said no b/c they need to determine my type -- he thought RRMS -- and that the MRIs and LP would do that so they could determine my medication. Is that really how they decide your medication? I didn't even think you had to have an LP to diagnos, so why would you need it to determine type???
I also wondered if someone could tell me about the different meds I could take. Honestly, I was thinking of treating this homopathically since I'm pretty mild it seems. However, he said RRMS can progress and the meds will slow that. So, I guess I will take the stuff. He said there is a German equivalent to Copaxone (sp) that is oral so I don't have to inject ... that would be terrific!
Well, any feedback would be greatly appreciated. I just want to make sure that everything is as it should be ...
Blessings,
ArmyGirl73
Hope everyone is doing well. I met my new neuro today. It was at a German hospital in Wittlich, so I was really nervous about the language barrier, etc. but my doctor was super nice and spoke excellent English. I wish my German was that good. :-)
Anyway, I wanted to have you guys weigh in if you would on a few things that confused me. So, here goes ...
My MRIs weren't sent over, so he only had the reports to go on w/my symptom history and the other neuro's observations. He retested my reflexes, etc and said that I had very distinct diffences between the left side of my body and the right. Both he said had slowed and unusual reactions, but my left was extremely off. when he hit my left knee, my leg would just jiggle forever until he stopped it. And all the reflexes were off.
Then he checked my eyes and said my left eye has nystagmus. He asked if I'd had any recent eye issues and I told him yes describing what had recently cleared up from the previous several weeks. He then told me my left optic nerve was inflamed and that there seemd to be some atrophy ( can a nerve have atrophy or was he talking about some other muscle). So, he had me redo a VEP on the spot. The right eye was fine, but my left eye had definte difference and slowing in response. He said I need to see an optomalogist (sp?). He said to protect my right eye b/c it was compensating for my left eye. I asked if my left was going to get better or worse and he said not better, but he couldn't say if glasses would help it. He just kept saying I should protect my right eye to retain the sight capabilities I have now. So ... is this normal for MS or is my eye something else????
Then he said they wanted to go through with an LP and another set of MRIs. He wants to see if my MRIs have changed any since the last ones almost two years ago. He said that he was surprised I only had six lesions considering my neuro exam. I asked if that was because by the time I had those MRIs my only remaining symptom was fatigue, and would that mean the lesions weren't active or something. He said no, once a lesion is there it's there forever and will always show up ... is that true? I thought sometimes they were only there during an attack if you were in the early stages???
Lastly, I asked if we could avoid the LP because I'm absolutely terrified of needles. He said no b/c they need to determine my type -- he thought RRMS -- and that the MRIs and LP would do that so they could determine my medication. Is that really how they decide your medication? I didn't even think you had to have an LP to diagnos, so why would you need it to determine type???
I also wondered if someone could tell me about the different meds I could take. Honestly, I was thinking of treating this homopathically since I'm pretty mild it seems. However, he said RRMS can progress and the meds will slow that. So, I guess I will take the stuff. He said there is a German equivalent to Copaxone (sp) that is oral so I don't have to inject ... that would be terrific!
Well, any feedback would be greatly appreciated. I just want to make sure that everything is as it should be ...
Blessings,
ArmyGirl73
Hello,
You are right ... my eye specialist was great! He's a civilian who works on our base, and I've never been treated so kindly. He was really bothered that I didn't come in right away. I told him if I'd thought it was ON, I would have definitely come in. I just thought it was eye fatigue. He asked if it had hurt a lot, and I said yes, but I figured I was just overworking the muscles. He said next time to come in no matter what. :-)
Thanks for the tip on the meds ... I've been kinda freaking out about that one. I've been reading some stuff about the possibility of an oral medicine in the states being approved. I wonder if this is what they have in Germany. My neuro talked with me about it, but cautioned that it wasn't approved in the states yet so if I took it here I'd have to change there. However, if it's the same as in the states I might do that since I will be here for awhile.
Blessings,
ArmyGirl73
You are right ... my eye specialist was great! He's a civilian who works on our base, and I've never been treated so kindly. He was really bothered that I didn't come in right away. I told him if I'd thought it was ON, I would have definitely come in. I just thought it was eye fatigue. He asked if it had hurt a lot, and I said yes, but I figured I was just overworking the muscles. He said next time to come in no matter what. :-)
Thanks for the tip on the meds ... I've been kinda freaking out about that one. I've been reading some stuff about the possibility of an oral medicine in the states being approved. I wonder if this is what they have in Germany. My neuro talked with me about it, but cautioned that it wasn't approved in the states yet so if I took it here I'd have to change there. However, if it's the same as in the states I might do that since I will be here for awhile.
Blessings,
ArmyGirl73
That's a step in the right direction - I think I like this eye specialist. Was he on base or on the economy? Either way, its great to hear he was thorough and concerned.
When it comes time for meds, please research them all. IMHO the topic of IPIR was totally out of context and contained several key errors. IPIR does not cause a heart attack. Period. If you want to know more, I will be happy to chat with you about this.
Did you suspect the ON or did you think it was just eye fatigue? Either way, I'm glad it is on the record now.
be well,
Lulu
When it comes time for meds, please research them all. IMHO the topic of IPIR was totally out of context and contained several key errors. IPIR does not cause a heart attack. Period. If you want to know more, I will be happy to chat with you about this.
Did you suspect the ON or did you think it was just eye fatigue? Either way, I'm glad it is on the record now.
be well,
Lulu
Thanks all for your advice and support. I finally got into the eye specialist on Friday. He did a lot of tests, dilated my eyes and said it looked as though I was recovering from a bout of ON.
He was so curious why I didn't come in. I just laughed and said I thought it was bad eye strain. He said going forward I needed to see him every six months, and that he thought from the damage he could see that it wasn't my first episode of ON.
So, I go in Thursday for an optic scan and some other stuff I don't remember. He said it would give him a good baseline for the amount of damage done, and something to compare in the future.
At any rate, thanks for all your advice. I'm glad I got in there. You guys and gals rock!!!
Blessings,
ArmyGirl73
He was so curious why I didn't come in. I just laughed and said I thought it was bad eye strain. He said going forward I needed to see him every six months, and that he thought from the damage he could see that it wasn't my first episode of ON.
So, I go in Thursday for an optic scan and some other stuff I don't remember. He said it would give him a good baseline for the amount of damage done, and something to compare in the future.
At any rate, thanks for all your advice. I'm glad I got in there. You guys and gals rock!!!
Blessings,
ArmyGirl73
Thank you all for your help in this. I thought it was a pretty good visit too, but was concerned about those few things.
I hope to see the eye doc next week, and find out what they say. I will also be scheduling my LP and new MRIs too.
I will let you all know what I find out about the oral meds too ... I'm all for that if it works! I was just bracing myself for the shots, and then I read about the IPIR and that freaked me out a bit. :-)
Also, a friend here in German who has MS said that the Germans are required to have LPs before giving the meds for MS. You can have a diagnosis, but no meds are allowed before and LP is done. I guess it's another safety step or something. Anyway, I guess that's what I'm doing then.
Thanks all so much for your support and responses. Take care.
Blessings,
ArmyGirl73
I hope to see the eye doc next week, and find out what they say. I will also be scheduling my LP and new MRIs too.
I will let you all know what I find out about the oral meds too ... I'm all for that if it works! I was just bracing myself for the shots, and then I read about the IPIR and that freaked me out a bit. :-)
Also, a friend here in German who has MS said that the Germans are required to have LPs before giving the meds for MS. You can have a diagnosis, but no meds are allowed before and LP is done. I guess it's another safety step or something. Anyway, I guess that's what I'm doing then.
Thanks all so much for your support and responses. Take care.
Blessings,
ArmyGirl73
In general, I do not think that this was a negative visit at all. He sounds like he wants to get more info. The Europeans seem to approach diagnosing MS in a slightly different and possibly more liberal way.
He was wrong that all MS lesions are there forever. Some do resolve/heal/disappear from the MRI. Only a small percentage disappear, so it isn't a huge point unless some doc decided that a disappearing lesion negated the diagnosis. Then, I would be really mad.
During my reading for the ON health page, I noticed several comments that glasses will not take care of the blurriness of ON. This makes sense, because refractive error (what causes the need for glasses) is caused by a change in the shape of the eye. ON is caused by damage to the nerves that carry the signal. So you could have the most perfect reception of an image on the retina, but the damaged optic nerve could still mess it up on the way to the brain.
If one eye is affected by ON, then it makes sense to try to optimize the vision in the good eye.
As far as categorizing the MS by LP - I've never heard of it. RRMS has a very high rate of O-Bands (about 95%) and PPMS has a lower one (about 60%) but that difference is not enough to cinch a diagnosis. So I'm not sure what his thought are, other than he might want the added evidence.
The oral med - I am too wasted today to read all the stuff. It looks like from 2000-2004 Teva's partner (German?) Lundbeck studied oral copaxone. From reports I found from around 2004 it wasn't showing satisfactory results. But, it appears that Teva was making progress with an oral med Laquinimod. Last year Laquinimod was granted "fast track" status by the FDA and was in phase II Clinical trials.
http://www.drugs.com/clinical_trials/laquinimod-immunomodulatory-action-confers-both-neuroprotective-anti-inflammatory-properties-8032.html
Perhaps this is the med? Or maybe oral Copaxone eventually had better results? Anyone else want to research this?
Quix
He was wrong that all MS lesions are there forever. Some do resolve/heal/disappear from the MRI. Only a small percentage disappear, so it isn't a huge point unless some doc decided that a disappearing lesion negated the diagnosis. Then, I would be really mad.
During my reading for the ON health page, I noticed several comments that glasses will not take care of the blurriness of ON. This makes sense, because refractive error (what causes the need for glasses) is caused by a change in the shape of the eye. ON is caused by damage to the nerves that carry the signal. So you could have the most perfect reception of an image on the retina, but the damaged optic nerve could still mess it up on the way to the brain.
If one eye is affected by ON, then it makes sense to try to optimize the vision in the good eye.
As far as categorizing the MS by LP - I've never heard of it. RRMS has a very high rate of O-Bands (about 95%) and PPMS has a lower one (about 60%) but that difference is not enough to cinch a diagnosis. So I'm not sure what his thought are, other than he might want the added evidence.
The oral med - I am too wasted today to read all the stuff. It looks like from 2000-2004 Teva's partner (German?) Lundbeck studied oral copaxone. From reports I found from around 2004 it wasn't showing satisfactory results. But, it appears that Teva was making progress with an oral med Laquinimod. Last year Laquinimod was granted "fast track" status by the FDA and was in phase II Clinical trials.
http://www.drugs.com/clinical_trials/laquinimod-immunomodulatory-action-confers-both-neuroprotective-anti-inflammatory-properties-8032.html
Perhaps this is the med? Or maybe oral Copaxone eventually had better results? Anyone else want to research this?
Quix
Hi there,
Sorry your post slipped to the 2nd page! Well, I've not heard of determining MS "type" through LP results. I'm glad you asked about this test being necessary or not. Because you are dx'd so it's not necessary. So, your thoughts are spot on.
Please ask this Dr. the name of the med he suggested. At this time, there is not an oral equivanlent for the main 4 - CRABs. Copaxone, Rebif, Avonex and Betaseron.
They were correct in suggesting the meds can slow progression. Not many Drs can predict an individuals course in the disease - though there are some out there who have seen so much they can.
Very very glad to hear they were focusing in on your eyes. Do you think the Dr. would be willing to send you to a neuroopthamologist for a further look?
Once you've received some more feedback on this post, I'll bump up some good ones on the meds for you.
Hang in there - many blessings back to you,
shell
Sorry your post slipped to the 2nd page! Well, I've not heard of determining MS "type" through LP results. I'm glad you asked about this test being necessary or not. Because you are dx'd so it's not necessary. So, your thoughts are spot on.
Please ask this Dr. the name of the med he suggested. At this time, there is not an oral equivanlent for the main 4 - CRABs. Copaxone, Rebif, Avonex and Betaseron.
They were correct in suggesting the meds can slow progression. Not many Drs can predict an individuals course in the disease - though there are some out there who have seen so much they can.
Very very glad to hear they were focusing in on your eyes. Do you think the Dr. would be willing to send you to a neuroopthamologist for a further look?
Once you've received some more feedback on this post, I'll bump up some good ones on the meds for you.
Hang in there - many blessings back to you,
shell
Hey there,
Thanks for the responses. I do feel better getting some feedback ... I'm recently diagnosed ... found out in a rather unusual way and I've been nervous ever since. This is my first appt. after diagnosis and unfortunately it was with a whole new doc in a new town, so that added to my complications.
I googled optic nerve atrophy and it said it's the nerve tissue dying ... causes can be from several things, one being MS so I guess I need to get my butt to the optamologist.
Thanks again ... I appreciate your support.
Blessings,
ArmyGirl73
Thanks for the responses. I do feel better getting some feedback ... I'm recently diagnosed ... found out in a rather unusual way and I've been nervous ever since. This is my first appt. after diagnosis and unfortunately it was with a whole new doc in a new town, so that added to my complications.
I googled optic nerve atrophy and it said it's the nerve tissue dying ... causes can be from several things, one being MS so I guess I need to get my butt to the optamologist.
Thanks again ... I appreciate your support.
Blessings,
ArmyGirl73
Something to remember is that there's no 'mild' MS - that's a determination made after death! There's no way to know how you will progress.
He probably means there's some atrophy of the muscles in the left eye.
About the LP needed to determine medication... This is the first time I've heard of that, but he seems to know what he's talking about otherwise - I would rely on his expertise.
He probably means there's some atrophy of the muscles in the left eye.
About the LP needed to determine medication... This is the first time I've heard of that, but he seems to know what he's talking about otherwise - I would rely on his expertise.
To: Armgirl73
I am sorry to hear that you are suffering eye discomfort it seems to be a condition with MS.
The MRI will be interesting if it shows any changes with the abnormal reflexes.
Perhaps it might be an idea to visit an optomolgist to re check eyes.
I saw one and he mentioned scarring at the back of the eye which affected my movement.
Have to in sert 6 drops daily but still have eye issues.
Hope someone on the forum can offer some help with your questions I dont know enough but i will keep watch on your posting for answers.
Take care tarter
I am sorry to hear that you are suffering eye discomfort it seems to be a condition with MS.
The MRI will be interesting if it shows any changes with the abnormal reflexes.
Perhaps it might be an idea to visit an optomolgist to re check eyes.
I saw one and he mentioned scarring at the back of the eye which affected my movement.
Have to in sert 6 drops daily but still have eye issues.
Hope someone on the forum can offer some help with your questions I dont know enough but i will keep watch on your posting for answers.
Take care tarter
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