Question:

In article <b7nvhp$2q5d…@ID-163463.news.dfncis.de

,

– Hide quoted text — Show quoted text - Sharon <noway…@hotmail.com

wrote: REP wrote: <snip Well … as I’ve mentioned, I don’t have lupus. I do have something wrong with my connective tissue. I also have severe carpal tunnel syndrome, ulnar neuropathy, tenodonitis and about a million other injuries to my right hand. CTS release surgery is NOT recommended for me, due to the problems with my connective tissue and being diabetic (I have lots of scarring in the nerve sheath, and surgery would just make the scarring – and the CTS – worse.) I strongly suggest getting at least two opinions before considering surgery. It doesn’t always help and sometimes make the problems worse. Some doctors are a little over-eager to operate. <snip That’s interesting about the scarring because when I got my gallbladder out laproscopically, I was told I wouldn’t have any scarring, but I have three huge red lumps where they cut.  Every doc that I have seen since my surgery always first thing point to my scars and say, "What’s THAT??"   I say, my surgery, and they stare for a while and say, "interesting…."   Maybe I scarred from my UCTD?

Hmm. I was thinking about internal scarring; I don’t know about incisions. Diabetics are supposed to heal poorly, yet the scars from my laproscopic tubal ligation last year are almost invisible. I do know that when my doctor opened me up, she could hardly get to my fallopian tubes due to the swelling of the connective tissue, and it complicated the surgery a great deal. I do have recurrent cellulitis in the leg with venous stasis, and the scarring from that is, well, icky. In other words, I don’t know exactly  - I just know that three of my doctors told me that whatever it is that is wrong with my connective tissue would cause the kind of scarring that would make the CTS and ulnar neuropathy a lot worse.

Response:

{{{{{Janers}}}}} Enjoy the "Show Me" state and we’ll say prayers. "Janers" <rojak…@bright.net

wrote in message

news:rzlna.3364$lf3.592452@cletus.bright.net… – Hide quoted text — Show quoted text -

Well went and had them tests today.  Also got fitted for inserts in my shoes. According to the doctor, my nerve in my spine where I HAD a diskectomy in 99 is being pinched by the SCAR tissue.  Not too bad but it is becoming such.  And there is nerve damage for sure. I also have neuropathy of the feet and hands and the test is positive for that.  He had to warm my hands and feet before he could even do that test. I told him, keep that light away as much as possible LOL In my rt leg is the damage, plus muscle wasting is evident DUH.  My feet hurt to walk but not all the time, just MOST LOL He also told me I have amild carpal tunnel on my rt hand and with my hand going numb from neuropathy that is going to be a problem also.  DUH so there are a few items we have to consider.  It is from the MCTD/Lupus that this is coming from, the neuropathy.  The nerve damage is from my back.  He said the neuro doc will not do surgery till it gets way bad, and believe me I won’t let him either LOL. I asked what he thought of acupuncture for pain, he thought that was good but no insurance will pay for that.  Really expensive here and he knows of doctors who are doing it.  Man that out of pocket would be UGH. So this is an on going thing and I have to do the best I can with it.  Get more controlled with meds and with lupus.  HELL I thought I was LOL He suggested neurotin. so anyone on it? and he did not order it, until my May blood work is back and thyroid and everything is checked. Then the rheumy is to do that. So there ya have it.  More docs and more things to contend with, but hey I am still walking and still going to have a nice Vacation in Missouri. Any more crap to throw my way?  Naw hugs to all happy trails janers

Response:

REP wrote:

<snip

In other words, I don’t know exactly  - I just know that three of my doctors told me that whatever it is that is wrong with my connective tissue would cause the kind of scarring that would make the CTS and ulnar neuropathy a lot worse.

That really stinks because it’s supposedly really helpful if you could go through with it.  :(  So sorry REP.  What do you do for your carpel tunnel other than braces and I guess ice or heat?  It’s not a pleasant thing to deal with, esp with the world moving to computerland these days.  My fiance just switched computers after buying a brand new laptop because it was causing him carpel tunnel symptoms, and he is a computer tech, so he couldn’t afford to get carpel tunnel at all.  He took a $1000 loss on his laptop just to get rid of it.  He said it was so painful and he didn’t have it, just the start of it. -Sharon — Visit my webpage: http://www.qc.edu/~sperlof1/ ~Peace~ We must come to see that peace is not merely a distant goal we seek, but it is a means by which we arrive at that goal… We must pursue peaceful ends through peaceful means.                               -Martin Luther King Jr.

Response:

In article <b7plbj$34ho…@ID-163463.news.dfncis.de

,

 Sharon <noway…@hotmail.com

wrote: REP wrote: <snip In other words, I don’t know exactly  - I just know that three of my doctors told me that whatever it is that is wrong with my connective tissue would cause the kind of scarring that would make the CTS and ulnar neuropathy a lot worse. That really stinks because it’s supposedly really helpful if you could go through with it.  

I’ve heard so many conflicting things about the surgery I’m convinced it’s a good thing I can’t have it. Anyway, I have so many injuries to this arm thay I’d still be in pain and largely unable to do much with it even if I did have the surgery.

 So sorry REP.  What do you do for your carpel tunnel other than braces and I guess ice or heat?  

I ca’t wear the brace for long because it make the ulnar neuropathy worse (UN is like being whacked on the funny bone all the time). I can’t take steroids (diabetes) or NSAIDs (kidney disease), but I can and do take Flexeril and Vicodin. I can’t really do heat, because of the inflammation and cold makes the nerve pain worse, so mostly I try to act like I’m real brave. I try not to use it, don’t type more than 15 minutes an hour, stuff like that.

It’s not a pleasant thing to deal with, esp with the world moving to computerland these days.  My fiance just switched computers after buying a brand new laptop because it was causing him carpel tunnel symptoms, and he is a computer tech, so he couldn’t afford to get carpel tunnel at all.  He took a $1000 loss on his laptop just to get rid of it.  He said it was so painful and he didn’t have it, just the start of it.

Mine was caused by my work, and it’s bad enough that I’m on Disability leave from work from it. In fact, when I was examined by the company doctors, they expressed amazement that I had kept working as long I had.

Response:

In article <b7mms7$2l44…@ID-163463.news.dfncis.de

,

 Sharon <noway…@hotmail.com

wrote: Janers wrote: Well went and had them tests today.  Also got fitted for inserts in my shoes. <snip Oh, and I’ve heard wonderful things IRT the carpel tunnel surgery.  Some people I know who have had it said they are no longer in any pain whatsoever, so that’s promising!  No complaints to counter it either.

Well … as I’ve mentioned, I don’t have lupus. I do have something wrong with my connective tissue. I also have severe carpal tunnel syndrome, ulnar neuropathy, tenodonitis and about a million other injuries to my right hand. CTS release surgery is NOT recommended for me, due to the problems with my connective tissue and being diabetic (I have lots of scarring in the nerve sheath, and surgery would just make the scarring – and the CTS – worse.) I strongly suggest getting at least two opinions before considering surgery. It doesn’t always help and sometimes make the problems worse. Some doctors are a little over-eager to operate. I forget the name of the surgery for the ulnar neuropathy, but I do know even that if it goes well, it is extremely painful post-surgery for a *year.* I haven’t tried neurontin – I’ve been a little put off by the scandal (the manufacturer has been pushing doctors to prescribe it to everyone for everything at very high doses) but I thik I"ll ask about it at my next visit. I can’t do braces for long – it makes the nerve damage worse – and what I take is Flexeril, which helps some.

Response:

REP wrote:

<snip

Well … as I’ve mentioned, I don’t have lupus. I do have something wrong with my connective tissue. I also have severe carpal tunnel syndrome, ulnar neuropathy, tenodonitis and about a million other injuries to my right hand. CTS release surgery is NOT recommended for me, due to the problems with my connective tissue and being diabetic (I have lots of scarring in the nerve sheath, and surgery would just make the scarring – and the CTS – worse.) I strongly suggest getting at least two opinions before considering surgery. It doesn’t always help and sometimes make the problems worse. Some doctors are a little over-eager to operate.

<snip

That’s interesting about the scarring because when I got my gallbladder out laproscopically, I was told I wouldn’t have any scarring, but I have three huge red lumps where they cut.  Every doc that I have seen since my surgery always first thing point to my scars and say, "What’s THAT??"   I say, my surgery, and they stare for a while and say, "interesting…."   Maybe I scarred from my UCTD? -Sharon — Visit my webpage: http://www.qc.edu/~sperlof1/ ~Peace~ We must come to see that peace is not merely a distant goal we seek, but it is a means by which we arrive at that goal… We must pursue peaceful ends through peaceful means.                               -Martin Luther King Jr.

Response:

Madison,  so glad that you posted a reply to Janers!  Doesn’t matter to us if your "s" sticks….please post and we will ignore the sticking letter. Hugs, Sherry <LR…@webtv.net

wrote in message

news:635-3E9E85E4-113@storefull-2273.public.lawson.webtv.net… – Hide quoted text — Show quoted text -

hi janers, i’m on neurontin and it has helped a lot!  my pcp put me on it in dec because i wasn’t sleeping due to so much pain.  boy do i get a good night sleep now!   i’m only on 600 mg right now but the dose is being increased since i’m starting to have a lot of pain in my legs again.  i have peripheral neuropathy from mid shin down.  lots of burning and numbness in my legs and feet.  my advice is to start this med very slowly because you can  feel very groggy from it.  but after a few days your body will adjust.   hope this helps.  madison (who doesn’t post because the letter s on my keyboard sssssticks!!)

Response:

Janers wrote:

Well went and had them tests today.  Also got fitted for inserts in my shoes.

<snip

(((Janers)))) That’s a heck of a lot on your plate!  Do you know Rosie from AMF and ASA?  She’s on neurontin and lovin’ it.  I tried it a few years ago, before my symptoms were this bad, and it didn’t do anything for me, but maybe things are different now with my new symptoms.  Good luck with it! Oh, and I’ve heard wonderful things IRT the carpel tunnel surgery.  Some people I know who have had it said they are no longer in any pain whatsoever, so that’s promising!  No complaints to counter it either. -Sharon — Visit my webpage: http://www.qc.edu/~sperlof1/ ~Peace~ We must come to see that peace is not merely a distant goal we seek, but it is a means by which we arrive at that goal… We must pursue peaceful ends through peaceful means.                               -Martin Luther King Jr.

Response:

Well went and had them tests today.  Also got fitted for inserts in my shoes. According to the doctor, my nerve in my spine where I HAD a diskectomy in 99 is being pinched by the SCAR tissue.  Not too bad but it is becoming such.  And there is nerve damage for sure. I also have neuropathy of the feet and hands and the test is positive for that.  He had to warm my hands and feet before he could even do that test. I told him, keep that light away as much as possible LOL In my rt leg is the damage, plus muscle wasting is evident DUH.  My feet hurt to walk but not all the time, just MOST LOL He also told me I have amild carpal tunnel on my rt hand and with my hand going numb from neuropathy that is going to be a problem also.  DUH so there are a few items we have to consider.  It is from the MCTD/Lupus that this is coming from, the neuropathy.  The nerve damage is from my back.  He said the neuro doc will not do surgery till it gets way bad, and believe me I won’t let him either LOL. I asked what he thought of acupuncture for pain, he thought that was good but no insurance will pay for that.  Really expensive here and he knows of doctors who are doing it.  Man that out of pocket would be UGH. So this is an on going thing and I have to do the best I can with it.  Get more controlled with meds and with lupus.  HELL I thought I was LOL He suggested neurotin. so anyone on it? and he did not order it, until my May blood work is back and thyroid and everything is checked. Then the rheumy is to do that. So there ya have it.  More docs and more things to contend with, but hey I am still walking and still going to have a nice Vacation in Missouri. Any more crap to throw my way?  Naw hugs to all happy trails janers

Response:

Aieee. EMG — I cringe at the thought; for me, it was pure torture, on highly inflammed muscles. Hope yours went okay… Grace. p.s. Is neuropathy a symptom of Lupus? How common is it? I don’t have it, but I remember getting stuck with the pins and rolled over with the pizza cutters, during hospital tests… – Hide quoted text — Show quoted text -Janers wrote:

Well went and had them tests today.  Also got fitted for inserts in my shoes.

Response:

Janers, I was taking the neurontin and it helped with the nerve pain.  My sister, a diabetic, has been taking it for yrs for her "diabetic neuropathy.  She was really happy for me when I started taking it. (((((((Janers)))))))) Sherry "Janers" <rojak…@bright.net

wrote in message

news:rzlna.3364$lf3.592452@cletus.bright.net… – Hide quoted text — Show quoted text -

Well went and had them tests today.  Also got fitted for inserts in my shoes. According to the doctor, my nerve in my spine where I HAD a diskectomy in 99 is being pinched by the SCAR tissue.  Not too bad but it is becoming such.  And there is nerve damage for sure. I also have neuropathy of the feet and hands and the test is positive for that.  He had to warm my hands and feet before he could even do that test. I told him, keep that light away as much as possible LOL In my rt leg is the damage, plus muscle wasting is evident DUH.  My feet hurt to walk but not all the time, just MOST LOL He also told me I have amild carpal tunnel on my rt hand and with my hand going numb from neuropathy that is going to be a problem also.  DUH so there are a few items we have to consider.  It is from the MCTD/Lupus that this is coming from, the neuropathy.  The nerve damage is from my back.  He said the neuro doc will not do surgery till it gets way bad, and believe me I won’t let him either LOL. I asked what he thought of acupuncture for pain, he thought that was good but no insurance will pay for that.  Really expensive here and he knows of doctors who are doing it.  Man that out of pocket would be UGH. So this is an on going thing and I have to do the best I can with it.  Get more controlled with meds and with lupus.  HELL I thought I was LOL He suggested neurotin. so anyone on it? and he did not order it, until my May blood work is back and thyroid and everything is checked. Then the rheumy is to do that. So there ya have it.  More docs and more things to contend with, but hey I am still walking and still going to have a nice Vacation in Missouri. Any more crap to throw my way?  Naw hugs to all happy trails janers

Response:

hi janers, i’m on neurontin and it has helped a lot!  my pcp put me on it in dec because i wasn’t sleeping due to so much pain.  boy do i get a good night sleep now!   i’m only on 600 mg right now but the dose is being increased since i’m starting to have a lot of pain in my legs again.  i have peripheral neuropathy from mid shin down.  lots of burning and numbness in my legs and feet.  my advice is to start this med very slowly because you can  feel very groggy from it.  but after a few days your body will adjust.   hope this helps.  madison (who doesn’t post because the letter s on my keyboard sssssticks!!)

Response:

Hi Janers, I am on neurontin. It seems to help my neuropathy, at least it does when it is not too severe. I am only on 1200mgs, and I can increase if need be. I try to stay on the lowest possible dose. It gives me room to go up, if necessary. Certainly worth a try for you. BJ-Sk. Canada "Janers" <rojak…@bright.net

wrote in message

news:rzlna.3364$lf3.592452@cletus.bright.net… – Hide quoted text — Show quoted text -

Well went and had them tests today.  Also got fitted for inserts in my shoes. According to the doctor, my nerve in my spine where I HAD a diskectomy in 99 is being pinched by the SCAR tissue.  Not too bad but it is becoming such.  And there is nerve damage for sure. I also have neuropathy of the feet and hands and the test is positive for that.  He had to warm my hands and feet before he could even do that test. I told him, keep that light away as much as possible LOL In my rt leg is the damage, plus muscle wasting is evident DUH.  My feet hurt to walk but not all the time, just MOST LOL He also told me I have amild carpal tunnel on my rt hand and with my hand going numb from neuropathy that is going to be a problem also.  DUH so there are a few items we have to consider.  It is from the MCTD/Lupus that this is coming from, the neuropathy.  The nerve damage is from my back.  He said the neuro doc will not do surgery till it gets way bad, and believe me I won’t let him either LOL. I asked what he thought of acupuncture for pain, he thought that was good but no insurance will pay for that.  Really expensive here and he knows of doctors who are doing it.  Man that out of pocket would be UGH. So this is an on going thing and I have to do the best I can with it.  Get more controlled with meds and with lupus.  HELL I thought I was LOL He suggested neurotin. so anyone on it? and he did not order it, until my May blood work is back and thyroid and everything is checked. Then the rheumy is to do that. So there ya have it.  More docs and more things to contend with, but hey I am still walking and still going to have a nice Vacation in Missouri. Any more crap to throw my way?  Naw hugs to all happy trails janers

Response:

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