› Forums › General Melanoma Community › Neuropathy hands and feet Neurologist tests tests!
- This topic has 21 replies, 5 voices, and was last updated 12 years, 2 months ago by
boot2aboot.
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- February 15, 2012 at 11:47 pm
My onc. requested I see a neurologist for relief or treatment of my neuropothy in my hands and feet. It has gotten worse since the onset about a month ago. My appt. was today.
She has me going in for a battery of tests. Is this really necessary? She has me completed freaked out in the meantime (told me not to worry, ha!). MRI of the brain (just done in Nov.), MRI of the spine, and MRI of thora…(not sure what that was/is). Bloodwork (I get that), a nerve conducting test.My onc. requested I see a neurologist for relief or treatment of my neuropothy in my hands and feet. It has gotten worse since the onset about a month ago. My appt. was today.
She has me going in for a battery of tests. Is this really necessary? She has me completed freaked out in the meantime (told me not to worry, ha!). MRI of the brain (just done in Nov.), MRI of the spine, and MRI of thora…(not sure what that was/is). Bloodwork (I get that), a nerve conducting test.I also get ruling things out from the Dr's point of view, but I am anxious to say the least. I requested an open MRI and the answer was ABSOLUTELY no. She said the pictures aren't good enough. Really?
I am 8mos. out from IL 2 treatment and was under the impression neuropathy was fairly common. My onc. was sure it was not the cancer but a side affect from treatment. The neurologist kept hinting at the melanoma possibly in the spine, brain, nerves, etc. I have been responding to the IL2 treatment since week 1 in the hospital. Last scans in Dec. show continued improvement. Many tumors disappeared, others shrunk by 80% or more. Bloodwork last week excellent. Could there be issues in the brain (MRI clean in Nov. when they checked for rining in the ears), or spine that are not responding?
She said there was very subtle differences between my right and left legs. For those with neuropathy, did your muscles also feel weak? Or heavy at times?
So frustrated, thoughts?
Karin
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- February 16, 2012 at 12:42 pm
She might just be a really thorough dr. and wants to have her own results. She might also not know a lot about melanoma or IL-2- really can't be expected to. The very cynical part of me always thinks about the money part – esp if you have good insurance – but I try to squelch that part.
Anyway, there are lots of reasons that are unrelated to you and your case that might explain her ordering other tests. Listen to your onc – he/she is in a better position to judge your case.
Congrats on your great response to IL-2.
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- February 16, 2012 at 4:39 pm
Thank you bunches for your reply. I thought all of your same thoughts too. These are 3 seperate MRI's and if not necessary I hate for my insurance to pay for that knowing down the road I may have to …
I still don't understand neuropathy and what it is all about yet so if anyone has some insight it would be appreciated.
Karin
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- February 17, 2012 at 2:37 am
Karin,
I have a question about your IL2. How did you know that you were responding after one week? The week that you went home to recoop, did they test you? Do you mind telling me how many bags you were able to take? My brother just had 10 and he goes back on Monday for the 2nd phrase of round 1. I am just wondering if he should be asking to take a certain test to see if its working.
Thank you very much, I wish you the very best of luck.
Kelly
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- February 17, 2012 at 2:37 am
Karin,
I have a question about your IL2. How did you know that you were responding after one week? The week that you went home to recoop, did they test you? Do you mind telling me how many bags you were able to take? My brother just had 10 and he goes back on Monday for the 2nd phrase of round 1. I am just wondering if he should be asking to take a certain test to see if its working.
Thank you very much, I wish you the very best of luck.
Kelly
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- February 17, 2012 at 4:46 pm
The Dr. came all but bouncing into my room one morning with a piece of paper in his hands and a big smile on his face. It was a graph of my LDH levels from day 1 to day 4 in the hospital. My high was 3800 and had dropped into the 600's. This is a good indicator but cannot be relied on completely, of course. Only in hindsight (after scans) can we be sure of a response. I had scans at 3wks after Round 1 which showed improvement so I then went back in for Round 2.
Number of bags…don't get too hung up on that. There is someone here that only was able to do round 1 and was a complete responder. I had problems week 2 from too much water weight (recovery after week 1 I didn't use the Lasix and went into the hospital with water weight). That set me back # of bags. I am not certain, but I want to say I did 23bags TOTAL for the 4 hosp. visits. Week 4 I only made it through 3.
Normal LDH levels are usually around 100-240 or thereabouts.
Karin.
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- February 17, 2012 at 4:46 pm
The Dr. came all but bouncing into my room one morning with a piece of paper in his hands and a big smile on his face. It was a graph of my LDH levels from day 1 to day 4 in the hospital. My high was 3800 and had dropped into the 600's. This is a good indicator but cannot be relied on completely, of course. Only in hindsight (after scans) can we be sure of a response. I had scans at 3wks after Round 1 which showed improvement so I then went back in for Round 2.
Number of bags…don't get too hung up on that. There is someone here that only was able to do round 1 and was a complete responder. I had problems week 2 from too much water weight (recovery after week 1 I didn't use the Lasix and went into the hospital with water weight). That set me back # of bags. I am not certain, but I want to say I did 23bags TOTAL for the 4 hosp. visits. Week 4 I only made it through 3.
Normal LDH levels are usually around 100-240 or thereabouts.
Karin.
-
- February 17, 2012 at 4:46 pm
The Dr. came all but bouncing into my room one morning with a piece of paper in his hands and a big smile on his face. It was a graph of my LDH levels from day 1 to day 4 in the hospital. My high was 3800 and had dropped into the 600's. This is a good indicator but cannot be relied on completely, of course. Only in hindsight (after scans) can we be sure of a response. I had scans at 3wks after Round 1 which showed improvement so I then went back in for Round 2.
Number of bags…don't get too hung up on that. There is someone here that only was able to do round 1 and was a complete responder. I had problems week 2 from too much water weight (recovery after week 1 I didn't use the Lasix and went into the hospital with water weight). That set me back # of bags. I am not certain, but I want to say I did 23bags TOTAL for the 4 hosp. visits. Week 4 I only made it through 3.
Normal LDH levels are usually around 100-240 or thereabouts.
Karin.
-
- February 17, 2012 at 2:37 am
Karin,
I have a question about your IL2. How did you know that you were responding after one week? The week that you went home to recoop, did they test you? Do you mind telling me how many bags you were able to take? My brother just had 10 and he goes back on Monday for the 2nd phrase of round 1. I am just wondering if he should be asking to take a certain test to see if its working.
Thank you very much, I wish you the very best of luck.
Kelly
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- February 16, 2012 at 4:39 pm
Thank you bunches for your reply. I thought all of your same thoughts too. These are 3 seperate MRI's and if not necessary I hate for my insurance to pay for that knowing down the road I may have to …
I still don't understand neuropathy and what it is all about yet so if anyone has some insight it would be appreciated.
Karin
-
- February 16, 2012 at 4:39 pm
Thank you bunches for your reply. I thought all of your same thoughts too. These are 3 seperate MRI's and if not necessary I hate for my insurance to pay for that knowing down the road I may have to …
I still don't understand neuropathy and what it is all about yet so if anyone has some insight it would be appreciated.
Karin
-
- February 16, 2012 at 12:42 pm
She might just be a really thorough dr. and wants to have her own results. She might also not know a lot about melanoma or IL-2- really can't be expected to. The very cynical part of me always thinks about the money part – esp if you have good insurance – but I try to squelch that part.
Anyway, there are lots of reasons that are unrelated to you and your case that might explain her ordering other tests. Listen to your onc – he/she is in a better position to judge your case.
Congrats on your great response to IL-2.
-
- February 16, 2012 at 12:42 pm
She might just be a really thorough dr. and wants to have her own results. She might also not know a lot about melanoma or IL-2- really can't be expected to. The very cynical part of me always thinks about the money part – esp if you have good insurance – but I try to squelch that part.
Anyway, there are lots of reasons that are unrelated to you and your case that might explain her ordering other tests. Listen to your onc – he/she is in a better position to judge your case.
Congrats on your great response to IL-2.
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- February 17, 2012 at 4:32 pm
Hi, Karin. I can't offer any advice on your neuropathy but I did just have MRIs of my brain and spine. The spine MRI consisted of 3 separate parts….cCrvical, Lumbar and Thorax (C-spine, L-spine T-spine) I saw a neuro-oncologist who tested one side against the other also. Since you showed a slight difference it sounds like they just want to be cautious. The MRI did take a long time and I was placed pretty far into the machine. I took a few Ativan about 1/2 hour before the test. Other meds may work as well or better. See if your doc will prescribe something if you think you may need it. Best of luck to you
Frankd brooklyn
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- February 17, 2012 at 4:55 pm
Thank you Frank. Long story but I asked for a 2nd opinion from the head of the neuro-center and he has got me in for an appt. early Monday followed by scans at his office. The did prescribe a Valium so I promised to give it a try. Uggg. After speaking to my Onc. about it they wanted me to go ahead and follow the neuro's recommendations. (I just questioned if the neuro is hinting possible mel why wouldn't my Onc. have been all over that?) So, I am scared to pieces.
(I went with the 2nd opinion route because 1st Dr. notified me as we were leaving the appt. that she was leaving the practice in 2 weeks. The staff tried SO hard to get me to make the appt. with the other Dr. but I wanted to get in right away. They obviously could not come right out and say why they kept pushing. Good old hindsight.)
Karkin
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- February 17, 2012 at 4:55 pm
Thank you Frank. Long story but I asked for a 2nd opinion from the head of the neuro-center and he has got me in for an appt. early Monday followed by scans at his office. The did prescribe a Valium so I promised to give it a try. Uggg. After speaking to my Onc. about it they wanted me to go ahead and follow the neuro's recommendations. (I just questioned if the neuro is hinting possible mel why wouldn't my Onc. have been all over that?) So, I am scared to pieces.
(I went with the 2nd opinion route because 1st Dr. notified me as we were leaving the appt. that she was leaving the practice in 2 weeks. The staff tried SO hard to get me to make the appt. with the other Dr. but I wanted to get in right away. They obviously could not come right out and say why they kept pushing. Good old hindsight.)
Karkin
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- February 17, 2012 at 4:55 pm
Thank you Frank. Long story but I asked for a 2nd opinion from the head of the neuro-center and he has got me in for an appt. early Monday followed by scans at his office. The did prescribe a Valium so I promised to give it a try. Uggg. After speaking to my Onc. about it they wanted me to go ahead and follow the neuro's recommendations. (I just questioned if the neuro is hinting possible mel why wouldn't my Onc. have been all over that?) So, I am scared to pieces.
(I went with the 2nd opinion route because 1st Dr. notified me as we were leaving the appt. that she was leaving the practice in 2 weeks. The staff tried SO hard to get me to make the appt. with the other Dr. but I wanted to get in right away. They obviously could not come right out and say why they kept pushing. Good old hindsight.)
Karkin
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- February 17, 2012 at 4:32 pm
Hi, Karin. I can't offer any advice on your neuropathy but I did just have MRIs of my brain and spine. The spine MRI consisted of 3 separate parts….cCrvical, Lumbar and Thorax (C-spine, L-spine T-spine) I saw a neuro-oncologist who tested one side against the other also. Since you showed a slight difference it sounds like they just want to be cautious. The MRI did take a long time and I was placed pretty far into the machine. I took a few Ativan about 1/2 hour before the test. Other meds may work as well or better. See if your doc will prescribe something if you think you may need it. Best of luck to you
Frankd brooklyn
-
- February 17, 2012 at 4:32 pm
Hi, Karin. I can't offer any advice on your neuropathy but I did just have MRIs of my brain and spine. The spine MRI consisted of 3 separate parts….cCrvical, Lumbar and Thorax (C-spine, L-spine T-spine) I saw a neuro-oncologist who tested one side against the other also. Since you showed a slight difference it sounds like they just want to be cautious. The MRI did take a long time and I was placed pretty far into the machine. I took a few Ativan about 1/2 hour before the test. Other meds may work as well or better. See if your doc will prescribe something if you think you may need it. Best of luck to you
Frankd brooklyn
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- February 17, 2012 at 9:27 pm
The tests you need are an EMG/NCS and Qsart skin test of the ulnar and peronial nerves…a good neuro will do this…i have neuropathy but it is from Zelboraf…not IL2…sometimes drugs that stimulate the immune system will cause an auto-immune reaction…i doubt this is permanent if it is a drug or treatment side effect…anyway the neuro you see will get to the bottom of it…in the meantime i recommend gabapentin…and yes, neuropathy can make your muscles feel weaker- mine do especially if i have walked for awhile-my left foot starts dragging and i have to wear an ankle support
boots
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- February 17, 2012 at 9:27 pm
The tests you need are an EMG/NCS and Qsart skin test of the ulnar and peronial nerves…a good neuro will do this…i have neuropathy but it is from Zelboraf…not IL2…sometimes drugs that stimulate the immune system will cause an auto-immune reaction…i doubt this is permanent if it is a drug or treatment side effect…anyway the neuro you see will get to the bottom of it…in the meantime i recommend gabapentin…and yes, neuropathy can make your muscles feel weaker- mine do especially if i have walked for awhile-my left foot starts dragging and i have to wear an ankle support
boots
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- February 17, 2012 at 9:27 pm
The tests you need are an EMG/NCS and Qsart skin test of the ulnar and peronial nerves…a good neuro will do this…i have neuropathy but it is from Zelboraf…not IL2…sometimes drugs that stimulate the immune system will cause an auto-immune reaction…i doubt this is permanent if it is a drug or treatment side effect…anyway the neuro you see will get to the bottom of it…in the meantime i recommend gabapentin…and yes, neuropathy can make your muscles feel weaker- mine do especially if i have walked for awhile-my left foot starts dragging and i have to wear an ankle support
boots
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