RAFsyth
07-01-2001, 11:16 PM
I am a 63 yr old male living in the Los Angeles area. Peripheral Neuropathy was confirmed in my hands and legs in NOV 2000. The confirmation was through EMG and he classified it as above moderate. I have gone through all the tests to detct the root cause with no results. I have tried several medications including Neurotrin without success. I have had surgery for bladder and prostate cancer and that appears to be under control. I have had bone problems, as many as 14 fractured ribs with no known trauma or cause. There have have been hints and suspicions by the doctors of some type of cancer floating in the system but nothing can be confirmed or pinpointed.
My main concern at the moment is the progression of the neuropathy in my legs. It started about 2 years ago with some minor pain and numbness in my toes and has now progressed to major numbness and pain from my toes all the way up to my knees. If I walk or stand for more than a couple of minutes the pain in the calf muscle feels like a horrendous cramp. I take at least 4 tablets of Vicodine 7.5/750 daily. Fortunately, I have no side effects from the Vicodine.
I have been told that I could be in a wheelchair within 6 months. This is not an acceptable alternative to me without a fight. My ability to continue fighting and my sense of humor (some call it bizarre) are what keep me going.
My problem is I don't know who, how or what to fight. The only current recommendations are a retake of all the tests that i have gone through once or twice. My financial resources are limited and I just can't see spending the money to redo what has already been done.
I need some new ideas or thoughts as to how to prodeed. Any suggestions would be greatly appreciated. Thanks and God bless.
My main concern at the moment is the progression of the neuropathy in my legs. It started about 2 years ago with some minor pain and numbness in my toes and has now progressed to major numbness and pain from my toes all the way up to my knees. If I walk or stand for more than a couple of minutes the pain in the calf muscle feels like a horrendous cramp. I take at least 4 tablets of Vicodine 7.5/750 daily. Fortunately, I have no side effects from the Vicodine.
I have been told that I could be in a wheelchair within 6 months. This is not an acceptable alternative to me without a fight. My ability to continue fighting and my sense of humor (some call it bizarre) are what keep me going.
My problem is I don't know who, how or what to fight. The only current recommendations are a retake of all the tests that i have gone through once or twice. My financial resources are limited and I just can't see spending the money to redo what has already been done.
I need some new ideas or thoughts as to how to prodeed. Any suggestions would be greatly appreciated. Thanks and God bless.
Sponsor
WoodRunner
07-02-2001, 04:07 PM
Hello RAFsyth... Your pain symptoms sounds similar to my fresh battle with Painful Neuropathy. However, I know my cause was either from running too high too long on blood sugar levels and/or possibly my extreme b-12 deficiency. Did you really give the Neurontin time to work? You must ramp up on the dosage and then sometimes wait another couple of weeks or so to see any benefit. I'm taking 1800mg daily now and didn't see any benefit at first. Now, I believe it might be helping. However, then... the biggest quick benefit came when I started to combine it with a twice daily dosage of Elavil. 25mg at bedtime and then 25mg at around 11:00am each day. Could you try the Elavil? I hope you fare well.
WoodRunner.
WoodRunner.
RAFsyth
07-06-2001, 01:44 AM
Hi WoodRunner...Thanks for taking the time to respond. I checked back on my medication records and I had indeed tried the medications that you suggested without any success. The Neurontin is primarily effective in treating diabetic peripheral neuropathy and the Elavil is to treat chronic pain. In my case they have tested out diabetes, B-12 and all the known causes at the current time. The Vicodin ES provides pain relief for me but there is nothing being done to attack the disease itself, in fact they don't even know what that root cause is. Hard to attack something when you don't know what to attack. The rapid progression is what is bothering me. I have gone from moderate to severe in just 6 months. That is much more rapid than what is normal, from what I have been told.
By the way, looking backing on some of your old posts, I noticed a discussion about B-12 vs B-6. It may be a little different than you were told.
Thanks again and best of health to you, Russ
[This message has been edited by moderator1 (edited 07-06-2001).]
By the way, looking backing on some of your old posts, I noticed a discussion about B-12 vs B-6. It may be a little different than you were told.
Thanks again and best of health to you, Russ
[This message has been edited by moderator1 (edited 07-06-2001).]
FREDO
08-06-2001, 12:55 AM
Hi RAFsyth, I have recently been to a pain management Doc due to back surgery that did'nt take. I had back fusion at L-5/S-1 in jan 2000. The fusion, however, was minimal and therefore I have to deal with beu ceu pain.
Anyway, this Doc told me I had peripheral neuropathy from the knees down; no reflexes, leg pain and feet go numb after standing 1 or 2 hours. I am also Type II Diabetic, no drugs, just diet controlled.
He told me that it was very possible that my leg pain/numbness was due in part to failed surgery at L5/S-1, so.... it might do some good for you to have an MRI done on your back to see if there is any problems around this area.
Hope your pain free tonight, good luck,
------------------
FREDO
Anyway, this Doc told me I had peripheral neuropathy from the knees down; no reflexes, leg pain and feet go numb after standing 1 or 2 hours. I am also Type II Diabetic, no drugs, just diet controlled.
He told me that it was very possible that my leg pain/numbness was due in part to failed surgery at L5/S-1, so.... it might do some good for you to have an MRI done on your back to see if there is any problems around this area.
Hope your pain free tonight, good luck,
------------------
FREDO
Marcylee
10-05-2001, 04:19 AM
If you have a heated indoor swimming pool near you, I believe this could give you some help. It has helped me with balance and keeping my leg muscles stronger by muscle strenghtenng streches in thw water. Be sure to wear water shoes in the pool. It does take time and increases in using Neurontin. Hope somehow this can help you. I am 63 and battle Neuroapthy, Narcolepsy, Sleea Apnea and Thalessemia Minor Anemia. Don't give in and I won't either. Marcylee
FREDO
10-08-2001, 12:30 AM
RAFsyth - As stated above, I also have confirmed painfull Peripheral Neuropathy. I was getting pain in my calves just walking a couple blocks, had to take breaks, then continue walking.
One month ago, I was prescribed 20mg Paxil x 1 daily. It is a SSRI, and treatment of neuropathy using this is becoming expanded. After three weeks dosing, I doubled the distance I can walk before calves start cramping, and feel it has helped me in a couple other ways; not so much pain or pins and needles in feet, legs or arms.
It would be worth your time to check it out.
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FREDO
One month ago, I was prescribed 20mg Paxil x 1 daily. It is a SSRI, and treatment of neuropathy using this is becoming expanded. After three weeks dosing, I doubled the distance I can walk before calves start cramping, and feel it has helped me in a couple other ways; not so much pain or pins and needles in feet, legs or arms.
It would be worth your time to check it out.
------------------
FREDO
RAFsyth
10-08-2001, 02:12 AM
Thanks for taking the time to respond. Sounds like some good information to check out.
Russ
Russ
v. dobbs
10-22-2001, 11:48 AM
Hi RAFsyth, and anyone else with neuropathy. Hope this can help. I was diagnosed 8 years ago and had no idea what the doctor was talking about. I have idiopathic neuropathy(for unknown reasons). It can be very frustrating because there is no cure. The doctor said if their was a disease they could help that and it would help the neuropathy. But since I have no disease they can't help the neuropathy. A doctor told me there are over 200 diseases and medications that can cause this and there is no magic bullet that we are all looking for. So far we haven't found one for me, and I have been tested for most everything you can think of.
It started in my feet and is now in my fingertips.
I even became a co-founder of the local support group in my city in order to learn more. If you have one near you join, as it gives you the chance to meet people in the same condition as yourself.
I take 2200 mg. of neurotin a day, and I had to work up to it. I take 300 in the am. Then I take 1900 mg. at bed time to help me sleep through the night. It doesn't completely take away the pain, but it helps a lot. I am now also taking a strong pain medication, for the days I have to be on my feet a lot.
As told to me at a support meeting, there are a lot of things to help us, but not everything will help everyone.Keep trying and good luck.
It started in my feet and is now in my fingertips.
I even became a co-founder of the local support group in my city in order to learn more. If you have one near you join, as it gives you the chance to meet people in the same condition as yourself.
I take 2200 mg. of neurotin a day, and I had to work up to it. I take 300 in the am. Then I take 1900 mg. at bed time to help me sleep through the night. It doesn't completely take away the pain, but it helps a lot. I am now also taking a strong pain medication, for the days I have to be on my feet a lot.
As told to me at a support meeting, there are a lot of things to help us, but not everything will help everyone.Keep trying and good luck.
FREDO
10-22-2001, 10:48 PM
Hi V,Dobbs - With the neuropathy, I also have :
Failed back fusion at L-5/S-1
two bulging discs C3-4,C4-5; and small herniated disc at C5-6=entire region showing bone spurs, calcified ligament, severe left-sided foraminal stenoses w/moderate Rt-sided stenoses - stenoses's both at C5-6, having headaches, Lt shoulder/arm pain and numbness.
All apparantly part of the pain problem.
I am taking 160mg Oxycontin, 20mg Paxil, 1200mg Skelaxin, and am presently at 900mg Neurontin working towards 1800mg Neurontin daily.
Can you see anything else I can be doing to help with the pain? I told my Neuro-surgeon no surgery on neck as I already have one failed fusion. Start more PT soon, and EMG & CT Mylogram next month. How long and at what increments did you increase your Neurontin to achieve your level? I am increasing 100mg x 3 daily every 2 or 3 days to keep from getting spacey.
Any help/knowledge you can share would be appreciated.
Docs think original Neuropathy caused by Diabetes (I am diet controlled/take no meds for this).
Thanks for any info.......And will share mine if any Q's I can answer........
------------------
FREDO
Failed back fusion at L-5/S-1
two bulging discs C3-4,C4-5; and small herniated disc at C5-6=entire region showing bone spurs, calcified ligament, severe left-sided foraminal stenoses w/moderate Rt-sided stenoses - stenoses's both at C5-6, having headaches, Lt shoulder/arm pain and numbness.
All apparantly part of the pain problem.
I am taking 160mg Oxycontin, 20mg Paxil, 1200mg Skelaxin, and am presently at 900mg Neurontin working towards 1800mg Neurontin daily.
Can you see anything else I can be doing to help with the pain? I told my Neuro-surgeon no surgery on neck as I already have one failed fusion. Start more PT soon, and EMG & CT Mylogram next month. How long and at what increments did you increase your Neurontin to achieve your level? I am increasing 100mg x 3 daily every 2 or 3 days to keep from getting spacey.
Any help/knowledge you can share would be appreciated.
Docs think original Neuropathy caused by Diabetes (I am diet controlled/take no meds for this).
Thanks for any info.......And will share mine if any Q's I can answer........
------------------
FREDO
v. dobbs
10-23-2001, 12:33 AM
Hi Fredo!
Do they think your back and neck problems caused your neuropathy? I have a sister-in-law recently disgnosed with pn and now she has ddd. Could there be a connection?
I started neurotin on 400mg. once a day. As you say I would get spacy or feel as if I was on a high drunk, and I don't even drink. It has taken me nearly two years to reach 2200mg. Even now during the day I cannot take more that 300 at one time. That is why I take such large dosages at night, to help me sleep through the pain. My neuropathy is progressing slowly. But I can tell in this last year it is getting worse. I now have mild diabetis. It is controlled by my diet, but this did not cause my pn. I do have to careful, because it can agreviate it. My doctor wanted to do another emg to see how much it has progressed. I told him I could tell how much it had progressed without that. But we did it anyway. Everytime I go in we run more tests to see if anything shows up. The lab will lay out about 6 tubes for blood. I ask them, if it wouldn't be easier to just take a pint all at once. I am not trying to make light of the situation, but it is better to find a bright side, because I have done my share of crying.
I had to quit work because I could not stand on my feet for long periods. The only concession I have made is I have a cane for when I walk long distances.
This last May I had to have the first two toes of my right foot operated on. Because of the neuropathy the toes of that foot are starting to athropy. I am still able to walk even though I have lost 2/3rds. of the feeling in my left foot.
Here are two things I have found to help me.
Last year we installed a hot tub and it seems to help a lot. It doesn't have to be a large one. Mine is for only three people, since I am the only one who gets in it.
This if for a veggi. cocktail receipe given to me.
Take 1 carrot, 1 orange(peeled) and two slices of pineapple. Run through a blender and enjoy. Also take bromelain tablets. This is tablet form of pineapple. It is supposed to have properties to help nerves. It helps but I get tried of drinking it everynight.
There are so many things that are supposed to help and not everything will work for everyone. So keep trying.
As I told my doctor I'll just about try anything as long as it won't kill me. Let me know how you do.
v. dobbs
Do they think your back and neck problems caused your neuropathy? I have a sister-in-law recently disgnosed with pn and now she has ddd. Could there be a connection?
I started neurotin on 400mg. once a day. As you say I would get spacy or feel as if I was on a high drunk, and I don't even drink. It has taken me nearly two years to reach 2200mg. Even now during the day I cannot take more that 300 at one time. That is why I take such large dosages at night, to help me sleep through the pain. My neuropathy is progressing slowly. But I can tell in this last year it is getting worse. I now have mild diabetis. It is controlled by my diet, but this did not cause my pn. I do have to careful, because it can agreviate it. My doctor wanted to do another emg to see how much it has progressed. I told him I could tell how much it had progressed without that. But we did it anyway. Everytime I go in we run more tests to see if anything shows up. The lab will lay out about 6 tubes for blood. I ask them, if it wouldn't be easier to just take a pint all at once. I am not trying to make light of the situation, but it is better to find a bright side, because I have done my share of crying.
I had to quit work because I could not stand on my feet for long periods. The only concession I have made is I have a cane for when I walk long distances.
This last May I had to have the first two toes of my right foot operated on. Because of the neuropathy the toes of that foot are starting to athropy. I am still able to walk even though I have lost 2/3rds. of the feeling in my left foot.
Here are two things I have found to help me.
Last year we installed a hot tub and it seems to help a lot. It doesn't have to be a large one. Mine is for only three people, since I am the only one who gets in it.
This if for a veggi. cocktail receipe given to me.
Take 1 carrot, 1 orange(peeled) and two slices of pineapple. Run through a blender and enjoy. Also take bromelain tablets. This is tablet form of pineapple. It is supposed to have properties to help nerves. It helps but I get tried of drinking it everynight.
There are so many things that are supposed to help and not everything will work for everyone. So keep trying.
As I told my doctor I'll just about try anything as long as it won't kill me. Let me know how you do.
v. dobbs
Baney
12-05-2001, 11:25 PM
Hi. That can be frustrating. Usually that type of thing is from diabetes. Anyway, I've heard of some folks getting some relief with magnetic insoles. The cheap ones are useless, but get a good pair. Hope that helps.
CLC
03-03-2004, 05:18 PM
Hello Rafsyth, I am so sorry to hear of your pn getting worse. Please do a search on the net for the neuropathy association. There is alot of good information on that site. I haven't been there in a while but it helped me alot in the past. There are also some books written by a former attorney who developed Neuropathy himself that give alot of great information. The titles are: Numb Toes and Aching Soles, Numb Toes and Other Woes, and Nutrients for Neuropathy. The author is John Senneff. I have a copy of all three and they helped me alot also. I have recently developed the terrible cramping in my feet. I had already had muscle weekness and other pains. I have begun trying to eat a banana or drink a glass of orange juice every day for the potassium in them and I think it may be helping. I am improving somewhat. I just hope it is because of the bananas or OJ because that is pretty easy to do. I take 1000mg of b12 in the methylcobalium form(it dissolves under your tongue and is the best to take), B50, 400 IU vitamin E, one citracal calcium pill, and 1000 of Vitamin C. There is one more I would like to add when I go get vitamins again and that is the alpha hydroxy acid or something like that. I will look that up again right before I go. It is included in John Senneffs books as being good for Neuropathy. I do believe there is a chance that the vitamin therapy can help some and at any rate, it won't hurt to try. I was on crutches in the beginning and things weren't looking good for me. I am now walking, gingerly sometimes I must add, but still walking now. Some days I do real good. I only use a wheelchair if there is going to be lots of walking or a need for quick walking such as in airports, or an amusement park to keep up with my kids who are 13 and 14, not known for wanting to wait around for me to catch up. I do hope that perhaps with great luck and a miracle that some of the information I have added here for you helps. Good Luck and God Bless. CLC :)