heppy
09-02-2003, 01:47 PM
I am experiencing severe tingling and burning sensation in both forearms and hands and both legs from the knees down and numbness in toes of both feet.
This is particularly problematic when trying to sleep. The condition gets worse and wakes me after about 1/2 hour.
My doctor calls it 'glove & stocking paresthesia', suggested vitamin B! deficiency.. No improvement, after several injections.
He has prescribed 'Lorezapan' [Anti anxiety drug]
This helped for a while, but the condition is worsening and particularly drives me craxy during the night..
Why does it itensify while losing consciousness?
Does anyone have suggestions for other treatments.. to get at the cause.. or at least alleviate this growing problem which affects the quality of life. I am a senior, recently retired.
Thank you.
This is particularly problematic when trying to sleep. The condition gets worse and wakes me after about 1/2 hour.
My doctor calls it 'glove & stocking paresthesia', suggested vitamin B! deficiency.. No improvement, after several injections.
He has prescribed 'Lorezapan' [Anti anxiety drug]
This helped for a while, but the condition is worsening and particularly drives me craxy during the night..
Why does it itensify while losing consciousness?
Does anyone have suggestions for other treatments.. to get at the cause.. or at least alleviate this growing problem which affects the quality of life. I am a senior, recently retired.
Thank you.
Sponsor
chknmama
09-03-2003, 11:35 AM
I have peripheral neuraopathy also. My doc gave me Neurontin and clonazepam for it.And it has helped.maybe you should ask your doc about it.Good luck to you.Let me know how it goes.
Gentle Hugs
Gentle Hugs
heppy
09-03-2003, 04:23 PM
Dear Chknmama,
Thank you for your kind words and advice...
Very helpful and reassuring..
All the best to you.
Thank you for your kind words and advice...
Very helpful and reassuring..
All the best to you.
german30
09-03-2003, 06:38 PM
Interesting posts, I also have P.N., My fingers are numb and my feet up to my ankles have little feeling, I know this sounds strange to say you have little feeling but it feels like I'm walking on a floor made of golfballs. My doctor had me take Neurontin, but it didn't help,I spent four days at Mayo Clinic and was told "yes you have P.N." I don't mean to sound harsh, at least I found out that I do have it. So far I get a good night's sleep, but I can only be outside for a while when my feet really tell me to go inside and sit down, sorry I don't have any thoughts on help but just wanted to share my concern for both of you!!God Bless& Hang in there!
heppy
09-04-2003, 01:53 AM
Dear German 30,
Thanks for the posting.. It is comforting to hear of other aspects of this condition of PN... and that thers are troubled by something that doctors don't seeem to be able to deal with..
It isn't 'nice' to say 'misery loves company'.. but it does alleviate the misery to hear how others are coping. Today was a better day, because I increased the dosage of Lorezapan [or Ativan, as it is calso called] However the sleeping patterns are still disturbed by the tingling/ burning.. both arms hands, legs & feet.
However, one keeps on living, Thank God.
My very best wishes to you.
Thanks for the posting.. It is comforting to hear of other aspects of this condition of PN... and that thers are troubled by something that doctors don't seeem to be able to deal with..
It isn't 'nice' to say 'misery loves company'.. but it does alleviate the misery to hear how others are coping. Today was a better day, because I increased the dosage of Lorezapan [or Ativan, as it is calso called] However the sleeping patterns are still disturbed by the tingling/ burning.. both arms hands, legs & feet.
However, one keeps on living, Thank God.
My very best wishes to you.
toody64
09-04-2003, 03:32 AM
Hi,
I think you are describing me. Except for the arms, I only slightly have some indication fo PN in my right arm.
I was diagnosed only 5 months ago, and so far we have not been able to find a medication that does not make me sick. I mean really sick, in bed for days. At this time I am only taking Tramadol for the pain.It is time for me to be in bed but I know I will sleep such a short time I hate to even try. Did you have any problems with medications? It is comforting to be able to share our thoughts with each other. My best to you.
I think you are describing me. Except for the arms, I only slightly have some indication fo PN in my right arm.
I was diagnosed only 5 months ago, and so far we have not been able to find a medication that does not make me sick. I mean really sick, in bed for days. At this time I am only taking Tramadol for the pain.It is time for me to be in bed but I know I will sleep such a short time I hate to even try. Did you have any problems with medications? It is comforting to be able to share our thoughts with each other. My best to you.
german30
09-04-2003, 12:35 PM
Dear All:
Heppy, when I posted yesterday, I had the same thoughts: " Misery Loves Company", I am getting support from all of your postings and I hope you are too!! Some days are good, some days are bad, I would just like to share some thoughts about visiting Mayo Clinic, when you see so many people who SO much worse off than you are, it causes you to say " thank you God, for helping me cope with this"
Heppy, when I posted yesterday, I had the same thoughts: " Misery Loves Company", I am getting support from all of your postings and I hope you are too!! Some days are good, some days are bad, I would just like to share some thoughts about visiting Mayo Clinic, when you see so many people who SO much worse off than you are, it causes you to say " thank you God, for helping me cope with this"
heppy
09-04-2003, 04:10 PM
Dear Toody 64,
I am glad that this exchange of support message will bring some help & advice.. It certainly has done for me... I guess we all have different aspects of the same symptoms.
If it helps... I now take one Lorazepam [1 mgm ] inthe morning as waking up.. [this is when the condition feels worse.. and one at night before bed together with a proprietary sleeping pill [Nytol or Diphehydramine Hydrochloride [probably has a different Brand name elsewhere]
This seems to have helped the last two days. We have to keep going.!!!!
All the best
I am glad that this exchange of support message will bring some help & advice.. It certainly has done for me... I guess we all have different aspects of the same symptoms.
If it helps... I now take one Lorazepam [1 mgm ] inthe morning as waking up.. [this is when the condition feels worse.. and one at night before bed together with a proprietary sleeping pill [Nytol or Diphehydramine Hydrochloride [probably has a different Brand name elsewhere]
This seems to have helped the last two days. We have to keep going.!!!!
All the best
heppy
09-04-2003, 04:15 PM
Dear German 30,
I agree.... We are some of the lucky ones... even though it is darned irritating and you wonder 'Why me'.
There are lots worse off... I have a friend in England whose skin is beet ded , cracking & itching terribly.. He has to stay in a darkened room in Hospital... God sends so many things to try our patience and courage.
All the best & God bless..
I agree.... We are some of the lucky ones... even though it is darned irritating and you wonder 'Why me'.
There are lots worse off... I have a friend in England whose skin is beet ded , cracking & itching terribly.. He has to stay in a darkened room in Hospital... God sends so many things to try our patience and courage.
All the best & God bless..
PRIESTEN
09-07-2003, 08:45 AM
My husband has had this for eight years now and was given Tegretol 200mg twice a day, he has been able to function since this med was prescribed, prior to that he had severe burning in both hands and feet, blood vessel dialation produces more pain needed to put feet/hands in ice water all night long!! He now can play a round of golf out in the sun without pain! We went to dozens of doctors before traveling to Johns Hopkins....they think what caused it was arsenic poisoning!!! We think from pigments that he works with and was always in contact with....hope I have shed some light on the subject!
rayjj
09-07-2003, 11:00 AM
Hello,
This is my first post on this subject. A few weeks ago I woke up with slight numbness in my fingertips...then I noticed that my toes when I rub them against each other seemed sort of numb as well. I hadn't really paid much attention to it before, but the numbness in my fingertips seem to get more pronounced as the day goes on, but I don't feel it much in the a.m. upon awakening. I do take nutritional supplements but do not take anything specifically for this. I am wondering what is causing this as I do have arthritis in my neck and shoulders but I don't know why that should affect my toes. I am also wondering if this is going to get worse, as some of you have described, and if there is anything I can do now to keep it from getting worse. Any input would be very much appreciated. Good luck to all of you in coping with your specific problems. God Bless.
------------------
R.J.
This is my first post on this subject. A few weeks ago I woke up with slight numbness in my fingertips...then I noticed that my toes when I rub them against each other seemed sort of numb as well. I hadn't really paid much attention to it before, but the numbness in my fingertips seem to get more pronounced as the day goes on, but I don't feel it much in the a.m. upon awakening. I do take nutritional supplements but do not take anything specifically for this. I am wondering what is causing this as I do have arthritis in my neck and shoulders but I don't know why that should affect my toes. I am also wondering if this is going to get worse, as some of you have described, and if there is anything I can do now to keep it from getting worse. Any input would be very much appreciated. Good luck to all of you in coping with your specific problems. God Bless.
------------------
R.J.
jim's girl
09-08-2003, 07:35 PM
I registered to find out about acid reflux, then I
checked out dizziness where most of my probs have been
for 3 months. Recently something happened that sent me
here. This may be the scariest of all...my symptoms
to date...
feet used to feel hot, cold and skin burning when I
walked...don't know about bunched socks, but I felt
every wrinkle in the ones I had on. Could only walk
short distances, then had to sit. Eventually they
become blessedly numb...I can feel them, use them,
but they feel like they're wrapped in plastic wrap...
like they're far away. This phase has been a relief.
Dealing with dizziness probs in my left ear, seeing PT, when Fri, started having numbish feelings on my left outer leg, inside my left hand and outer upper arm. When my lower left lip started, I called the Doc, who sent me to ER where they tested for weakness (not), did EKG, blood work, and CT Scan...all normal. Nice to . No pain, no weakess. No stroke, no tumor, no heart prob. But something is changing in my body, and it's scary.
I'd asked a Doc about PN a year ago, he ran a sharp
thing around my feet and legs and didn't seem much
concerned. Now I'm thinking unless this is caused
by the same thing that's causing dizziness, I'd best
hop to a neurologist.
RE: NEURONTIN... 7-8 years ago I was having horrible muscle cramps in left leg while sleeping. Osteopath recommended Quinine. Guess what quinine does? Fixes the muscle cramps, but causes awful ear noises. Stopped quinine 5 years ago...(ears are much better) he then prescribed Neuontin for muscle cramps...I read the side-effects and gave the bottle back to the pharmacist. My son's lady was studying to be a nutritionist...she said "they're trying to access your magnesium". I've been taking magnesium/calcium supplements for 5 years. Feet felt better, bowels better, good for osteoporosis and leg cramps...no side effects that I can see.
Hope the info on magnesium helps somebody. But maybe what's happening now to me is beyond it? Scary.
I hate meds, it seems like the side-effects from one cause other problems. Most of the current dizziness started when I began to take Protonix for acid reflux, which I'd never had until I took Entex for decongestion which causes the occasional dizziness. Can go 3-4 days without Protonix if I'm not taking Entex! Now we have this new numbish thing, and I don't want to add more chemicals if possible.
(My mother had high blood pressure meds. Some wit
gave her nappresson for pain...she almost died from
the combination!)
I'm on three boards now, and have the uncomfortable feeling that they are connected in some way, at least in my case.
This seems like a loving group. Thanks for being there.
checked out dizziness where most of my probs have been
for 3 months. Recently something happened that sent me
here. This may be the scariest of all...my symptoms
to date...
feet used to feel hot, cold and skin burning when I
walked...don't know about bunched socks, but I felt
every wrinkle in the ones I had on. Could only walk
short distances, then had to sit. Eventually they
become blessedly numb...I can feel them, use them,
but they feel like they're wrapped in plastic wrap...
like they're far away. This phase has been a relief.
Dealing with dizziness probs in my left ear, seeing PT, when Fri, started having numbish feelings on my left outer leg, inside my left hand and outer upper arm. When my lower left lip started, I called the Doc, who sent me to ER where they tested for weakness (not), did EKG, blood work, and CT Scan...all normal. Nice to . No pain, no weakess. No stroke, no tumor, no heart prob. But something is changing in my body, and it's scary.
I'd asked a Doc about PN a year ago, he ran a sharp
thing around my feet and legs and didn't seem much
concerned. Now I'm thinking unless this is caused
by the same thing that's causing dizziness, I'd best
hop to a neurologist.
RE: NEURONTIN... 7-8 years ago I was having horrible muscle cramps in left leg while sleeping. Osteopath recommended Quinine. Guess what quinine does? Fixes the muscle cramps, but causes awful ear noises. Stopped quinine 5 years ago...(ears are much better) he then prescribed Neuontin for muscle cramps...I read the side-effects and gave the bottle back to the pharmacist. My son's lady was studying to be a nutritionist...she said "they're trying to access your magnesium". I've been taking magnesium/calcium supplements for 5 years. Feet felt better, bowels better, good for osteoporosis and leg cramps...no side effects that I can see.
Hope the info on magnesium helps somebody. But maybe what's happening now to me is beyond it? Scary.
I hate meds, it seems like the side-effects from one cause other problems. Most of the current dizziness started when I began to take Protonix for acid reflux, which I'd never had until I took Entex for decongestion which causes the occasional dizziness. Can go 3-4 days without Protonix if I'm not taking Entex! Now we have this new numbish thing, and I don't want to add more chemicals if possible.
(My mother had high blood pressure meds. Some wit
gave her nappresson for pain...she almost died from
the combination!)
I'm on three boards now, and have the uncomfortable feeling that they are connected in some way, at least in my case.
This seems like a loving group. Thanks for being there.
bme1361
09-17-2003, 12:32 AM
I can't tell you how comforting it is for me to read these posts. My Dental Hygenist recomended this site when I told her that I have pn. Six months ago I was doing alot of redecorating. Stripping wallpaper, painting, ect. I worked my you know what off getting ready for my son's open house. I was feeling very sore, but I was also working from sun-up to sun-down, and expected that. What I didn't expect was that my feet and hands would swell up. That's when it started. The pain. It has gotten a lot worse. I had every test the doctor could think of, then was finally diagnosed with pn. My doc is trying to find some meds that will finally help with me. My pain is in my hands ,feet, legs, back, and neck. I don't sleep, and if I'm on my feet a lot during the day, I pay for it the next day. I am going to talk to my doctor about some of these vitamins and medications that everyone is talking about. Hopefully, I'll find something that works for me. I'm only 42, but I feel like I'm 90. It's nice to be able to talk about my pain. I'm the type of person that suffers in silence. My husband and kids don't understand why I'm not as active anymore. I'm going to have them read these posts, so maybe they'll understand what I'm going through. God Bless you all! I'll be spending a lot of time reading these message boards. Thank God for them!
Bev.
Bev.
german30
09-17-2003, 11:18 AM
Dear All:
How is everyone feeling this morning? We have a forcast of rain, and I always seem to have more pain when the humidity is higher, anyone else relate to that? Bev: I certainly agree with you, although our families are supportive, unless they have P.N. it's hard to understand the pain and frustration that goes with it!! But thank God they help when ever possible.Everyone have a good, and let's support each other
[This message has been edited by german30 (edited 09-17-2003).]
How is everyone feeling this morning? We have a forcast of rain, and I always seem to have more pain when the humidity is higher, anyone else relate to that? Bev: I certainly agree with you, although our families are supportive, unless they have P.N. it's hard to understand the pain and frustration that goes with it!! But thank God they help when ever possible.Everyone have a good, and let's support each other
[This message has been edited by german30 (edited 09-17-2003).]
jvogle
09-17-2003, 01:29 PM
Hi All,
After reading all of your postings I can see where I might be heading -- not a pretty picture. And so many of you seem to be veterans -- so any thoughts would be deeply appreciated!
I started out with a dull aching pain in my buttocks. It went on for months hardly could walk. Had been going to a chiropractor for it. Finally had an MRI done. They thought it was an inflammation in the SI joint -- had cortisone injection and PT made it all worse. About the same time started with extreme vertigo -- got terrible spasms in my arms and fingers and in my legs. This lasted 3 horrible months.
Someone recommended increasing potassium, calcium and water. Did that -- went off the meds and it seemed to work for awhile. But still the dizziness presisted. Had an ENG etc from a ENT doctor -- all negative.
Went to another neurologist and had MRI of the cervical spine and brain -- found out had bulging discs at C4 through C7. Also made an EMG and it showed that I have a pinched nerve and PN (mild at the moment)
I also have degeneration of the L5 disc. He wants to do nerve blocking.
I have started back to PT and it seems to be helping but my back still goes into spasms and I still have the numbness in hands and pain in buttock but right after the deep massage it seems to go away -- temporary at best.
My brother has PN pretty bad -- wonder if it runs in families?
I had 4 car accidents -- probably that is what caused my cervical problems and a really bad fall -- wonder if that caused the PN.
Does anyone know can PN be reversed or does it just get worse as time goes on?
Have anyone out there suffered injuries that brought on the PN?
One neurologist put me on neurontin but my internist took me off it. He put me on quinine (but I found out real quick that it is not good). I am taking flexril, and naproxin and lots of vitamins including B6 and B12.
I understand B12 deficiencies can also cause nerve problems.
I will let you all know what happens with the new specialists I will be going to 26th of this month.
I am seeing a physiatrist and neurologist at the Hospital for Special Surgery in NY. I sure hope that they will be able to help me!!!!
By the way how is the Mayo Clinic -- are they really that good in diagnosing what is going on. If so I would spend the money and go there.
At the moment no two doctors can agree on what is really the matter. Amazing isn't it!!!!
Jacquie
After reading all of your postings I can see where I might be heading -- not a pretty picture. And so many of you seem to be veterans -- so any thoughts would be deeply appreciated!
I started out with a dull aching pain in my buttocks. It went on for months hardly could walk. Had been going to a chiropractor for it. Finally had an MRI done. They thought it was an inflammation in the SI joint -- had cortisone injection and PT made it all worse. About the same time started with extreme vertigo -- got terrible spasms in my arms and fingers and in my legs. This lasted 3 horrible months.
Someone recommended increasing potassium, calcium and water. Did that -- went off the meds and it seemed to work for awhile. But still the dizziness presisted. Had an ENG etc from a ENT doctor -- all negative.
Went to another neurologist and had MRI of the cervical spine and brain -- found out had bulging discs at C4 through C7. Also made an EMG and it showed that I have a pinched nerve and PN (mild at the moment)
I also have degeneration of the L5 disc. He wants to do nerve blocking.
I have started back to PT and it seems to be helping but my back still goes into spasms and I still have the numbness in hands and pain in buttock but right after the deep massage it seems to go away -- temporary at best.
My brother has PN pretty bad -- wonder if it runs in families?
I had 4 car accidents -- probably that is what caused my cervical problems and a really bad fall -- wonder if that caused the PN.
Does anyone know can PN be reversed or does it just get worse as time goes on?
Have anyone out there suffered injuries that brought on the PN?
One neurologist put me on neurontin but my internist took me off it. He put me on quinine (but I found out real quick that it is not good). I am taking flexril, and naproxin and lots of vitamins including B6 and B12.
I understand B12 deficiencies can also cause nerve problems.
I will let you all know what happens with the new specialists I will be going to 26th of this month.
I am seeing a physiatrist and neurologist at the Hospital for Special Surgery in NY. I sure hope that they will be able to help me!!!!
By the way how is the Mayo Clinic -- are they really that good in diagnosing what is going on. If so I would spend the money and go there.
At the moment no two doctors can agree on what is really the matter. Amazing isn't it!!!!
Jacquie
bme1361
09-18-2003, 12:30 AM
Jacquie, I believe that my pn. was caused by an injury. I was in a car accident about 5 years ago. I was at a dead stop and a car hit me going 45 mph. Now that I look back I remember telling my old doctor about tingling feelings, and she just blew me off. My new doctor has been kind of blowing me off, too, till I put my foot down and told him that this pain was not all in my mind. My doctor told me that pn. does not usually get worse. But, it doesn't get better. You just treat the pain. I have to tell you that I don't trust what he says. Doctors don't know too much about this, and my pain has gotten worse than it was 4 months ago. I wish you God's speed.
Bev.
Bev.
toody64
09-18-2003, 03:57 PM
To jvogel.
I am so sorry you feel so bad I know what it is like. I have been unable to get a decent nights sleep for two nights now. By good I mean sleeping for more than three hours. I am new with PN. Diagnosed only 6 months ago. The condition has increasingly worsened. It started in my feet and legs and now is appearing in my right arm. I mentioned this to my Doctor and her reply was "of course it is starting in your arm, it is progressive" As far as getting worse, it has gotten worse for me over the past six months. How far will the pain escalate? I don't know and would like to have the answer to that question. I do know one thing, it is painful. But there is some relief from time to time and I live for those days. Our bodies adjust to different conditions and we learn to live with it.
A little hug.
Toody
I am so sorry you feel so bad I know what it is like. I have been unable to get a decent nights sleep for two nights now. By good I mean sleeping for more than three hours. I am new with PN. Diagnosed only 6 months ago. The condition has increasingly worsened. It started in my feet and legs and now is appearing in my right arm. I mentioned this to my Doctor and her reply was "of course it is starting in your arm, it is progressive" As far as getting worse, it has gotten worse for me over the past six months. How far will the pain escalate? I don't know and would like to have the answer to that question. I do know one thing, it is painful. But there is some relief from time to time and I live for those days. Our bodies adjust to different conditions and we learn to live with it.
A little hug.
Toody
jvogle
09-18-2003, 05:49 PM
Hi,
Thanks for your support and comfort.
I am going for PT 6 days a week and it seems to be helping -- but then it gets worse the next day.
I am hoping that the two new drs I am seeing in NYC will be able to suggest a plan of action.
I had to go on disability and I think the insurance company doesn't believe me even though the medical reports back up my complaints. And I have been to so many doctors.
Has anyone of you had to apply for disability insurance? Would you tell me if you were successful? Hope about with Social Security Disability insurance?
Thanks
Jacquie
Thanks for your support and comfort.
I am going for PT 6 days a week and it seems to be helping -- but then it gets worse the next day.
I am hoping that the two new drs I am seeing in NYC will be able to suggest a plan of action.
I had to go on disability and I think the insurance company doesn't believe me even though the medical reports back up my complaints. And I have been to so many doctors.
Has anyone of you had to apply for disability insurance? Would you tell me if you were successful? Hope about with Social Security Disability insurance?
Thanks
Jacquie
german30
09-18-2003, 11:30 PM
Jacquie: I read your post asking about Mayo Clinic, maybe you read my post earlier, but I spent 4 days at tne Clinic, every test they could do, they told me I certainly did have P.N., but there isn't any cure for it, they "assured" me that I should never be confined to a wheel-chair. I get the most support from you people. At least we have that in common!! God Bless all of you, and let's try to get a good night's sleep.
Tjcadero
10-16-2003, 02:12 PM
I too suffer with much pain in my hands when the humidity is up and raining. Sometimes it seems untolerable. Is it true B vitimins may help?
delrae4753
10-17-2003, 12:25 AM
Hi there I read all of your post I can relate: I have had pn for about 2 years i am on neurotin 300 mg 3x a day there are days when you barely get around and others days they legs feel fantastic for about 2 hrs I have pn in the hands, legs, fingers, toes, and elbows and yes its a progressive disease you get to the point when there is o more burning and you learn to live and deal with the numbness, then all of a sudden you get a new area that starts out like all the rest, I have applied 2x for ss disability, turned down twice because they feel i am capable of working hahah...... I refuse to hire an attorney who will take any money that I could possible get I will just hope for the best and pray that God will see me thru...........
[This message has been edited by delrae4753 (edited 10-16-2003).]
[This message has been edited by delrae4753 (edited 10-16-2003).]
kelleigh99
07-27-2004, 02:53 PM
I know this isn't what happening to you guys, but maybe you've come across my condition and have some knowledge. I woke up Saturday morning and my lower lip was numb. It is still numb and covers almost my whole bottom lip. Please reply if anyone knows what the cause could be.
Worried,
Kelly
Worried,
Kelly
drdonrs
09-11-2004, 12:37 AM
I have CIDP and moderate numbness in my feet. I have been using magnetic sole inserts placed in my New Balance walking shoes. The magnets are made by Nikken and if you go to their website www.nikken.com you can get a wealth of information as well as the opportunity to order them. They have made a big difference in my comfort level and I also wear them when I go to bed placed in a pair of soft slippers. It's worth a try. A recent study with over 100 patients showed an improvement in about 90% of the participants. My neuro. Norman Latov said they can't have any kind of negative effect