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Neuropathy Group

Brian...

I used to be a member of the Neuropathy Group. How do I stay a member of the Group, and NOT receive the emails?...I would like to be able to just read the postings for information.
Sincerely,
Paty

Re: [Peripheral_Neuropathy] What kind

Thanks for the reply Donna

 

So here is what I am looking at from what I am currently understanding Neuropathy is broken down into 3 sections.  Sensory, Motor, and Autonomic....

 

Sensory pretaning to our ability to feel eg the differance between hot and cold, where our feet are, if we have shoes or sock on or not, any trama to the area.

 

Motor pretaning to the muscles mostly the weaking of the muscles

 

And Autonomic pretanting to lost of control of internal organs, bladder, bowel, and even sometimes heart lungs and other organs. 

 

I belive that inorder for us to be the least bit sucessful in fighting this illness we should try our best to at least know which of the catagorie(s) we fit into.  That way we know what to watch for what is normal and what is not.  For example if your dealing with Motor neuropathy you could try doing some physical theripy to help keep the strength in the muscles most important to you eg legs, hands, arms.  If your dealing with Sensory neuropathy you would probly want to keep a water thermomitor by the tub and skinks to help prevent yourself from getting burned, maybe consider a walking stick or cane to help know where your feet are and whats on the ground below you. And I dont know a lot about  autonomic but I am sure that there are doctors that could help slow the process maybe keggels (not sure if guys can do that?) they would also probly want to keep close eye on your blood presure and other major organ functions that way they can catch any problems b4 they became life threating. 

 

I have not been told exactly much of anything.  I do know for certian that my biopsi says I have the Sensory neuropathy,  I have noticed a very minimal amount of muscle weekness but that could be from the decline in activity so I dont know about the Motor neuropathy.  And I am hoping beyond hope that I do not ever have to deal with the Autonomic part of things but seeings how I do have High blood presure and have had for a long time and also have some kidney issues that seem to come and go I am thinking it is a possiblity for me.  Hopefuly on the 15th when I see my new PCM I will be able to get the ball rolling to know more answers!

 

Some more info for you all Last night in all my searching I came across a web site that is trying to determin if the vacine Gardisile givin to teen girls to protect agains HPV is the cause of a 14 yr old girls neuropathy that ultimitly killed her in less than 2 year.  So please everyone make sure you are doing your homework.  Be sure to check into any medication, iv, inunization ect that any doctor or other person wants to put into your body.  The best thing any of us can do is to educate ourselves.  Just because the doctor says this is what I want you do to do does not by any means mean you have to do it.  It is your body, your life and your health if it does not seem right to you or you just need more information tell the docotor that.  Tell them that you can not allow this or that because you belive that its not right for you or tell them that you are hearing what they are saying but b4 you allow them to proceede you need to do some research and get some more information to be sure its the right thing for you.  Always remember that doctors are people just like you and me.  They are just educated in there own way if a doc came to a mechanic and the mechanic said you need to have your ac flused and refilled but you never use the ac would you let them do it?  Probly not  I think sometimes people forget that doctors are only people they do not know everything and they can be wrong.  There are always other treatments or options if one isnt right for you ask if theres other possiblities!

 

Ok I am going to shut up now Talk to you all later.

 

Shawna

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From: Donna <itzmedonna@yahoo.com>
To: Peripheral_Neuropathy@yahoogroups.com
Sent: Sat, February 27, 2010 7:33:41 PM
Subject: Re: [Peripheral_Neuropathy] What kind

 

Shawna, I get the jerking of the body too! 
I've been having these for about 9 months now.  I'm sorry that you are having these also, they get worse, at least my did.  I sit here at my computer and my foot will jerk up making my knee it the table from under neath.  What has me scare is when I get jerks inside my body (intestines and stomach).  I am afraid it will happen to my heart. I have been holding a cigarette and dropped it because my fingers and hands jerk too.   When ever I lay down my body jerks without fail. 
I was told I have Peripheral Neuropathy in 2005, it's in my feet.  The pain is burning (like someone is holding a torch to them), shocks like knifes are being shoved trough them and burning tingling sensation.  I have to sleep each night with my feet out of the blankets and the air conditioning going aimed at my feet or else I can't sleep.  I can't wear socks and I have 1 pair of tennis shoes (slip ons) that I can wear without pain.  I can't tell you how many times I have returned shoes and slippers back.  I am on a really good cocktail of medicines for as long as it lasts, knock on wood, but my feet are still very tender but at least they are not on fire any longer.
That's enough about me, try to have a good day.
Donna 

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From: Shawna Hall <shawnahall78@ yahoo.com>
To: Peripheral_Neuropat hy@yahoogroups. com
Sent: Sat, February 27, 2010 1:31:25 PM
Subject: [Peripheral_ Neuropathy] What kind

 

Hi everyone,

 

I was wondering if anyone here has been lucky enought to find out exactly which type of neuropathy you have?  And Idiopathic doesnt count!  So do you have motor neuropathy, sensory neuropathy, both or something all together?  And if you do know exactly which you have could you please give us a description of your symptoms and experiences with your neuropathy?  Lately I have noticed some new symptoms now that I am not so incredibly consumed by pain that I couldnt even think about anything else.  I still have the pain and quite a bit of it and constanly I just no longer feel like someone is crushing my bones and putting my feet threw a meat grinder.  But new symptoms I am noticing are full body jerk kind of like when your drifting off to sleep and all the sudden feel like your falling and you jump but a little different.  And today while laying down relaxing I noticed my foot felt odd kind of tingly and all the sudden it jumped and the tingel was gone?  My hands shake sometimes when I am holding things.  These kinds of experiences to me are more scary than the actual pain because this is to me what seems like the start of loss of control of my own body.  Any input would be great.

 

Shawna

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JACKPOT and the answer is!!!!!!!!!!!!!!!!!!!!!!!!

Hi everyone,

 

Well as I told you all a few weeks ago my last neurologist gave up on me!  And he was bascily my last dr on the case, I have been working on finding other help but in the mean time I could not just sit back and wait.  I had to do something so I continued on my own research.  Admittidly I was obsseing over finding the answer myself!  I can not sit around waiting for the snow to melt and the city to open back up nor can I sit around waiting for 2 months for an apt!  Well yesterday I hit the JACKPOT I belive I have finaly connected all of the dots and have put in the phone calls to get the blood work and other testing done to conferm what I belive I have.  I ran it by my husband who usualy thinks I am nuts and so desperate for an answer I belive I have everything.  This time he belives I am on to something, everything fits and connects perfectly I have some blood work that is a few months old that matches the criteirea of this syndrome.  So without futher delay here we go on what I found....

 

Abdominal obesity (excessive fat tissue in and around the abdomen)

Atherogenic dyslipidemia (blood fat disorders — high triglycerides, low HDL cholesterol and high LDL cholesterol — that foster plaque buildups in artery walls)

Elevated blood pressure

Insulin resistance or glucose intolerance (the body can't properly use insulin or blood sugar)

Prothrombotic state (e.g., high fibrinogen or plasminogen activator inhibitor–1 in the blood)

Proinflammatory state (e.g., elevated C-reactive protein in the blood)

 

 

It is Classified as or Called Metabolic Syndrome.  The information I found yesterday did not include the last 2 things on the list but I had to stop to cook dinner shortly after finding this and didnt get back to the research yet.  So I will have to figure out what those last 2 things are.  But as for the rest I am over weight and mostly in my belly, hips and thighs, as for the cholesterol the recent blood work matches that, I have been being treated for high blood pressure for 7 years now and when we were trying to get pregnant I was diagnosed with Polycystic Ovarian Syndrom (which has something to do with insulin resistance).  Some doctors call this prediabeties to make it be taken more seriously and as we all know diabeties is deffinatly linked to Neuropathy.  I am so anxious to find a dr that can help to confirm or dissmiss this possiblity because I really think that this might be the answer and If I can get this under control at the very least I will stop deteriating!!!!!!

 

Ok so heres the link to where I copied that information from so you all can read what you wish for yourself on your own time!!!!

 

http://www.americanheart.org/presenter.jhtml?identifier=4756

 

Get me some feed Back here!!!!

 

Shawna

new

I am 70 years old, female and have the neurpathy that is not getting any better. I take gapentine 1200 mg a day I am thinking of taking primrose also but what like to have input as to if it helps others. I have a hobby of quilting and so far I am doing alot of that. thanks for inviting me to your group. Holly

My husbands struggle

Hi,

 

Well lets see we have to move out of our current home into a "remodled" home in 6 months they are currently working on renovating/demolishing houses in our housing division and ours is scheduled probly in 6 months to be demolished.  So I have started making the phone calls to find out the differance between regular house and handicap accessible houses. Knowing that having some things around to help will help concerve energy and might even be nessicary within the year.  Right now I am just gathering information doing my home work so to say.  So I let my husband know I put that call in and was waiting on someone to call back to answer my questions so he would not get caught off guard by a person calling saying they were calling to answer my questions about handicap housing.  He got a discouraged look on his face and I had to force him to talk to me about what he was feeling/thinking he finaly told me that it was discouraging to hear about this kind of thing or to think about this kind of thing.  He says he knows it coming and probly faster than either of us are ready for but its just hard for him to think about that kind of thing right now when he is seeing me as fully capable just in pain.  He worries that I am just going to give up and put myself in a wheel chair and say the hell with walking and the hell with trying to find ways to get better.  I can understand that worrie and told him that I was not giving up and that having somethings like bars to grab onto in the tub/shower were helpful but not nessicary and that if the handicap housing isnt much differnt just single story and more handles or bars around the house then I didnt see the point in avoiding it when we are already going to be forced to move in 6 months no since into moving into a nonhandicap house and then finding out 6 months latter that I do need those features and we have to move again.  Well the next night Friday actualy the day that was just so awful he brought me home a bottle of wine!  I havent had a drink in well over a year I dont know exactly when my last drink was but I do know its not be recent And I am not going to completly give up my adult privlages just incase.  So any how he brought me the wine and when I went to open the bottle I could not twist the cap he was in the other room and could hear me guessed at what I was doing and told me to just wait and he would open it for me.  So I did just that but I went to here he was and talked to him while he finished up what he was doing.  I told him that while talking about handicap housing might be tuff for him to hear and I seem to be accepting it to easily its because I have already lived this.  I have already givin up grocery shoping and going out of the house for the most part other than doctors apts and when I just need to get out because I know I can not walk long enough to make it threw a store especialy during winter months with the cold and wet.  I told him that I can not open a simple bottle or jar sometimes I used to help my father build decks, and pole barns (great big barn shaped garage), and refurbish a car and things lke that and now I can hardly even open a soda or water bottle.  Some days I cant type without a lot of pain, going out to play with my little boy in the snow would probly put me in the hospital.  I said somedays the pain in my feet is so bad that using the breaks in the car is painful I have had to switch from a regular diaper bag and purse to a small carry on rolling suite case so that I dont have to carry all that weight and I can keep all my medical information with me to go to all these doctors apointments.  I told him that I have already been slowly adjusting my life in small ways that he hasnt really noticed because they are not a big deal but to me they are nessicary changes and that is why I notice them.  I am sorry that I am so much further along in my acceptance than he is but I dont have a choice what else can I do?!?!  Ignore it and cause more problems?  Get so depressed that I cry all day everyday and wont even get out of bed?  Neither of those are going to do anyone any good.  I have to accept adapt and keep on going.  I am not giving up if I were giving up I would not be subjecting myself to all of these hours of doctors visits spending every spare moment I have thinking about this and searching for answers.  I would not be doing phone interviews with doctors to see if they can help.  I would just stop.  I can not give up it is not an option for me.  I spent 4 years put myself and my husband threw emotional hell and a misscarage b4 we finaly got pregnant and then our child was born 8 weeks premature weighing only 4 lbs 1 oz.  He fought his way up to a big strong healthy wonderful boy I did not bring him into this world to abandon him or make him fend for himself all day while I lay in bed feeling sorry for myself!  I did not bring him into this world so he could end up taking care of me way b4 he is done being takin care of himself.  He is my world he is my reason for getting out of bed everyday and he is my reason to find a way to beat this thing.  He is the reason I am taking the time to right my story and track my progress and symptoms decline and pain.  Even if there is no cure found in my life time he will have something to refferance should he end up with this horrible problem or his children or grand children they will all have something I dont have the advantage of knowin what someone in there blood line has suffered threw and tried already!

 

Ok sorry thats nuff from me how are you all doing?

 

Shawna

long weekend

Well everyone here goes,

 

Friday I woke up and the pain I had was so bad I started txting my husband asking him to please come home! I was hurting badly and needed to just go back to bed or something.  I knew when our son (2years old) woke up there was just no way I was going to be able to cope.  He told me he was working and had a lot to get done that day he could not come home.  I sent another message telling him that I know I have asked in the past just to see if he could come home but this time was serious.  My pain was horrible and I didnt know how I was going to get threw the day alone.  I needed him to please come home.  Again I get the answer he has to much work that has to be done.  He is inline for a pormotion in May time frame that will help our family a great deal financialy especialy with me not working and still waiting on dissability.  He has already been told he got the promotion but in the military they tell you, that your promoted and then you have to wait x amount of time b4 its offical and if you screw up or slack off you can lose your promotion.  Something we cant really afford to have happen.   So I then txt him and told him that I could not stand it anymore if he could not come home and help me I felt I needed to go to the emergency room.  We have to get preapproval for ermergency room visits unless its a threat to life limb or sight.  Well now he is starting to think wow maybe I am not getting the full feeling of what is going on via txt msg so he calls me.  I answer the phone in tears hyperventalating he tells me to take a pill (I tend to not take my pain meds when I am home alone with my son)  I told him I already did an hour ago and its not helping.  He says ok I am going to put a call into our PCM and see what we can do if she can see you or if we can go to ER and got off the phone with me.  While he did that I put a call into my Pain Management clinic wanting to know if I could increase my dosage for times like that.  My script is for 10/325 oxycodone 5 times a day most days I only take it 2x a day.  But one pill was not working so I wanted to know if I could take 2 pills and then once got the relife under control go back to 1 every 4-5 hours.  I signed a pain contract with them that I would not recive pain meds from anyone but them, I would not take more meds than prescribed and if they felt I was misusing or abusing my meds they would stop prescribing them.  And that they had the right to do random drug testing on me to get that information if they felt it was nessicary.  With my 3rd neurologist releasing me from his care 2 weeks ago I can not afford to lose my pain management doctor he is all I have left right now.  My PCM is unconfortable prescribing me narcotic pain meds on a regular basis. And my phyciatrist doesnt do that kinda meds (he is a jack ass any how only see him to get meds my phycotheripist is much better) and my kidney dr is seeing me on an as needed basis but again he has nothing to do with my pain management or neuropathy.  So I can not afford to break any rules and lose my pain managment!

 

Any how hubby calling PCM waiting on pain management to call back.  Finaly managed to get myself composed again and went on a search.  I found a rheumotalogist thinks he can help scheduled an apt 1st avaliable March 30.  Damn thats almost 2 months away what to do in the mean time.  So I went to my insucrance web site to find out about occupational theripy and see if there were any in our network in my area well NONE within 60 miles of me.  UGH just my luck so I went on to search for Physical therapist there was only 1 with in 60 miles of me.  Gave them a call and told them I had a few question b4 I wait time going threw the process of getting the refferal to see them and then getting an apt and waisting there time and mine only to find out they couldnt help I wanted to know if they could.  So I breifly and as simply explained to the woman on the other end of the line what my problems are and that it had started in the feet has been working its way up my legs as high as my knees and now has suddenly hit my hands like lead balloon.  She put me on hold and got the actual Physical theripist!!!!!!!!!  Wow never got to talk to the exper them self on the phone.  So I explained again to him what was going on he seemed to be following along pretty well so I went into more detail and he said  yes he thinks he can help me.  I should go ahead and get the refferal he would lolve the chance to solve the puzzle and looks forward to the challange.    He also says that if I get there and we start going over everything in more detail and he gets to look over me and he feels he can not help me he will tell me right out.  I told him I do not have time to be going back to a dr of any time over and over and over just because they can not admit from the begining that they havent got a clue!  All I want its truth and  fact this is a complex problem I know that and I dont expect anyone to have the answer but I hope someone can help.  So he agreeded!!!!

 

I have written a letter to my PCM nurse telling her about these 2 doctors and that I would like to see them gave her there information and asked for a refferal.  My husband is going ot be nice enough to drop it off to her for me tommrow morning.  As soon as I get the refferal I can get an apt next day with PT!!!!!!

 

Shawna

Re: [Peripheral_Neuropathy] Question

I am interested in anything and everything I can get my hands on.  And as for the Sarcoidosis I have seen many times that they 2 are connected in some way.  I pay attention to this because my grandma had this for I belive 30 years b4 it took over her lungs and she passed away from it.  Lets see what I can find!  Ok below you will see 3 quote taken from 3 sites regarding neuropathy and sarcoidosis and the links.  Hope it helps someone!

 

Shawna

 

"United States

Neurosarcoidosis occurs in approximately 5% of patients with sarcoidosis. Peripheral neuropathy is seen in 5-15% of those with neurosarcoidosis. In a series from Johns Hopkins University, 2 of 33 patients with neurosarcoidosis had peripheral neuropathy. Eighty-five percent of this patient population was African American and 15% was white."

Source: http://emedicine.medscape.com/article/1171907-overview

 

"In rare cases, sarcoidosis may affect the nervous system and cause neurological problems, including peripheral neuropathy. Granulomas may occur in the brain, spinal cord, facial nerve and optic nerve, potentially causing facial paralysis and other symptoms of nerve damage, including peripheral neuropathy."

Source: http://millercenter.uchicago.edu/learnaboutpn/typesofpn/inflammatory/sarcoidosis.shtml

 

"Abnormal warm and cold sensation thresholds suggestive of small-fibre neuropathy in sarcoidosis"

Source: http://www.ncbi.nlm.nih.gov/pubmed/14652091

 

 

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From: brian A <buffalo1850@yahoo.com>
To: Peripheral_Neuropathy@yahoogroups.com
Sent: Sat, February 6, 2010 7:43:46 PM
Subject: Re: [Peripheral_Neuropathy] Question

 

  I am now on Medicaid. That covers 80% of the expenses. I can not afford the supplemental insurance. I tried for Medicare, but can not get it. There is another insurance they think I can get on that would cover what medicaid does not. I will find out soon. If I am approved, I plan to investigate more on whether my Sarcoidosis could possibly be part of it. My Neurologist did not know that, I though he did, and was concerned. I want to get all the previous tests for Sarcoid, sent to him. He is an excellent doctor, he cares a lot, and tries his best.

  I have a detailed letter from my doctor to my disability describing technically about me. I want to share it with you sometime, but I need to get up for work tomorrow. are any of you interested in the technical stuff he says?
 

  Please feel free to post your Neuropathy story. Just send an email to buffalo1850. neuropathy@ blogger.com and it will automatically post to the blog.

 

  Sincerely,

 

  Brian A

  http://neuropathy. webs.com/

  http://neuropathy1850.blogspot.com/

  buffalo1850@ yahoo.com

 

  Moderator of

  http://health. groups.yahoo. com/group/ Peripheral_ Neuropathy/

  http://health. groups.yahoo. com/group/ Peripheral_ Neuropathy_ Sister_Group/

  http://groups. yahoo.com/ group/Friends185 0/

 

 

 

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From: Sam Franc <franc@oregonfast. net>
To: Peripheral_Neuropat hy@yahoogroups. com
Sent: Sat, February 6, 2010 8:30:41 PM
Subject: Re: [Peripheral_ Neuropathy] Question

 

Metanx os a prescript.
But you can buy the 3 ingredients otc.
That's what I do . it is much cheaper that way.
Sam

On 2/6/2010 5:24 PM, Theresa Schroeder wrote:

Ron,

 

Is the Metanx an over-the-counter product?  Does it help relieve some of the tingling.  I also do not typically have pain.  I often, especially after wearing shoes for long periods of time, have a feeling of swelling on the ball of my foot – even though it is not swollen.  My issues are primarily the tingling and other annoying feelings in my feet.  If there was something that might lessen those feelings I would be willing to give it a shot.  My PN is also idiopathic.

 

Terry S.

 

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Shawna

Dee,


What a wonderfuly insperational speach you gave! I would love to learn more from you! How did you cope with this and raise your 2 boys? I struggle daily to find a balance between myself, my son and my husband! And most days it seems the mental emotional balance is what I struggle the most with! Dont get me wrong the pain is hurindous at times ok so most of the time since they havent found anything yet that works for me the one that worked the longest 3 months was cymbalta. But I cant control the pain I cant say pain go away! What I can do is learn to hide it a bit better and maybe even find ways to enjoy life again! My little boy is the greatest thing in the world and I do everything in my power to make sure he never once feels that I am angry or upset with him when I am in pain. But on the flip side of that coin putting all that energy into hiding it from my 2 year old leaves me on EMPTY when it comes to my husband and since my son was born he has been pushed so far out of my life and even my sons because I just could not handle 2 people I am just not realizeing that I am the one that pushed my husband away and I am the reason that he has went about his life as if nothing had changed when indeed it did we had a child born 8 weeks premature and my neuropathy gets worse and worse every passing day. For the last 2.5-3 years when my pain got to the point that I gave up and just didnt do anything hardly I slept ate and when my son was born cared for him and shuffeld him back and forth to his various dr apts. All the while my husband was still working going fishing, going to the shooting range ect. And for the longest time I blamed him I told him that he ignors us or he pretends like he is still a single man. He continued living while I turned our home into my prision. And I was very angry with him and blamed him for all of it. We even ended up seeing marriage councler it didnt help. Because I wasnt ready to admit my problems yet. And honestly I am just now realizing how hard it must have been for my husband to be alinated from his wife )we had only eachother for the first 4 years of marriage) and also pushed away from his 1st son. I was so incredibly over protective of my little boy when he was born and am still that way to tell the truth, that I bairly trusted my husband to hold him or feed him. Every time there was the slightes cry I would go running took me a long time to stop doing that but I evenutaly forced myself to go to another part of the house and let them have some time together and I would force myself not to go running at the slighest cry. I do belive that I am still a little to over protective by hey he is my one and only child 2nd pregnancy and it took us from oct 2003 untill his birthday July 26, 2007 to get him! And I know with out a doubt that if anything happend to him I wouldnt survive it! I am thinking I may have to print this out and let my husband read it. Maybe it will help mend the gap I have made between him and me!

ok anyhow rambeling please Id like to hear more from you or anyone that has any advice on rasiing young children and coping with pain!

Something else I realized when I was reading is that all of us say no one can understand us but us and others like us! I havent checked yet but Maybe we should create a support group linked to this one for the family of "us" to go and talk with one another and share there flusterations and tips and trick on how to handle the many moods that come with the pain of a loved one?!?!?!?



Shawna

Fw: [Peripheral_Neuropathy] me

   Ok I wanted to share this with everyone!!!! !

I spend my days, battling extreme fatigue, agonizing pain, and uncontrollable fear.

Constantly wondering what is wrong with me?  Why can no one help me?  Why can I not get answers?

Are my problems physical, mental or both?!?

Am I helpless?  Are there no answers for me?  Am I supposed to just deal with the misery and hope it will go away?

I do everything I can to hide my pain from my 2 year old!  The one thing that keeps me fighting for relief!

I do the best I can to keep him happy, clean, fed and loved.  But is it enough?

Struggling so hard daily to keep the house clean clothes washed and dinner on the table.

By the time I finish theses things I have nothing left, nothing left for myself, nothing left for my husband, nothing left for anyone.

Pushing my husband father and farther away every day with excuses of I am to tired, I am in to much pain or simply not right now!

This is me, this is my life... drained of all energy, of all hope, and filled with agonizing pain and debilitating fatigue.

All caused by something they label as Small Fiber Neuropathy.  A disses of the nerves untreatable, incurable, and in most cases caused by unknown reasons.

Shawna Hall

And brian if this some how fits in that blog thing you were talking about feel free to copy and paste  just dont have the energy!

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About Me - Cindi

Hello Everyone,

To give some background on my journey through Peripheral Neuropathy.  A little on myself I am 32 now the pain started when I was 29.  Well my pain started back in 5/2006 when I was pregnant with my second child.  I chalked it up to pain with second child birth plus taking care of an infant as my children are 13 months apart in age.  That was until after I gave birth the pain still remained.  My feet felt as though I was walking on fire, prickly pins and needle pain through my arms and hands, legs and feet and horrific pain in my lower back and sporadic pain in my middle back.  I went from walking a few miles a day to not able to walk a block to get the mail.  Thank goodness for great family and friend support.  I went through all the tests, EKG, Stress Test, Endoscopy, Colonoscopy, EMG, NCT, etc.  No one knew what to do so after almost a year and the only medicine I was given was amitriptyline which mildly helped at night I went to Scripps in CA for testing.  A neurologist gave me neurotin and elavil which at least I felt I could function somewhat.  He said it was nerve entrapment.  I went to a podiatrist locally in Yuma, AZ and went to an orthopedic surgeon for the arms.  Had surgeries starting 12/2008 – 12/2009, triple nerve decompression at knee, top of foot and ankle for both legs, carpal tunnel release both hands and ulnar nerve transposition both elbows.  Things started to get better than there was a down-ward spiral of the pain slowly getting back to the pain it was when things started in 2006.  Granted I am not to the pain I was in then due to the surgeries but still it is very painful.  So I went to a new neurologist in Scottsdale, AZ who determined I have peripheral neuropathy that is why the surgeries though they help initially can revert back depending on the severity of the neuropathy.  Right now the cause is unknown.  I have an appointment with a neuropathy clinic in 2/10.  I currently take neurotin, tramadol, nortriptylene, flector patches for the pain.  Have tried lidocaine cream and patches but they did nothing for the pain for me.  I am also dealing with a liver problem that occurred at the same time Non-alcoholic steteohepatis which is being treated by Mayo Clinic.  Because of my levels doctors will not try lyrica on me.  I had the best success going to pain management doctor who I was referred to by my podiatrist.  I had a trial of a spinal stimulator and awaiting a date for surgery for the permanent stimulator.  I know this is not for everyone but I can tell you the trial is non-invasive and for me it was like flipping the switch on the pain.  The hard part for me was having the relief for a week and then going back to the pain. 

Cindi

 

shoes

I have found wide, extra wide, etc. shoes on the Internet.  I get my "real" size but in 2xwide.  That has really helped me.  I have a very wide foot and all my life I just bought shoes a size bigger, but found they didn't really fit well.  When I found out I needed a good fitting shoe, I went online and found good looking shoes, plus the crocs which have an RX style which has a much wider protected toe.  I too have liked the New Balance shoes.  They come in extra wide sizes too. 

 

Don't compromise on a good fitting shoe.  It doesn't cure the PN, but it sure does help to have a shoe that feels good on your feet.  The wide sizes cost more, but they are worth it.
 

DeAnn

 

Don't miss out on a blessing because it wasn't packaged the way you expected.

In God We Trust

 

 

Axonal PN

I was told I have Axonal PN about 5 years ago.
I had tingling and numbness in my feet.
It did not bother me much untill 2 years ago.
Then I started to feel weak in my lower legs.
This got progressively worse until 2 weeks ago.
Then it got much worse, so that my legs got very weak.
They would get quite tired when I walked very long.
I used to walk a couple of miles a day.
Now if I walk 1/2 mile I am very tired.
My muscles do not recover very fast at all.
It will take a day to recover.
I went to a neutritional doc a week ago and he prescribed Metanx.
I have been on it about 4 days now.
Can't see any improvement yet.
Anyone else have this kind of PN?

My issue with neuropathy

Hi to everyone reading this! I suppose I should share my story. Everyone is here with their own story of how they developed neuropathy [some don't know for sure]. Mine started in September '09 when I was having very strange symptoms for months before that. It felt like my arms had been stuck into a freezer. To me, it feels like a freezer burn. Initially, it was in my head, then my legs and then my arms -- sometimes in my torso. Now I mostly feel it in my arms. It comes & goes throughout the day. Sometimes when I'm lying down, I feel it in my back. My tongue is also burning; seems to be associated with it but I don't know.

I know now that my neuropathy is the result of lyme disease. I was misdiagnosed for months -- finally diagnosed in October and treated [still in treatment] but the burning symptoms remain. My B-12 levels were checked back in August and were on the low-normal side. I took B-12 supplements which did not alleviate burning. But just last week, I saw a new doctor and he gave me a B-12 injection. That seemed to make a difference for a few days. I did not have total relief, but it was not as extreme as it can be.

I do not know if anyone else out there has neuropathy due to lyme disease. I just know that I can certain sympathize with everyone who is living with this kind of pain on a daily basis. Thanks for all the support here, I really do appreciate it!

Kate

Hi

Hello
I am going to figure out how this works soon,.. right now I do not feel too well and I am really really busy with school and on thursday I have to see the Neuropathyprofessor at Maastricht University Hospital and I hope then I will know more ,.. I will try my best to keep you posted,..
liefs
Annemie

About Brian

I have Peripheral Neuropathy. They do not know the cause of it. The doctor believes I was born with it.
I worked in the receiving and maintenence department in a retail store for 23 years. My doctor told me that if I continued doing that job, I would regret it later in life. I then went on disability.
I took computer classes, and tried getting a desk job. The problem with that is it spread into my hands. I can type, but not fast enough for that kind of job.
I now work as a cashier in another department store. I do not need to lift, or bend, and I find my legs can hold up to standing part time.
My pain is not bad. I have a lot of pins and needles in my feet, and hands. The pain usually does not come unless OI overdue myself.