Severe Neuropathy- what should I do?

Brain and nerves
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I am 77 and have been in a wheelchair for over 2 yrs. I have been to a number of Drs in New York City and none knows what to do. They know what it is but not what caused it. It has moved from the left upper leg to the right upper leg. This is a real humdinger of a condition! I am having gamma globulin injections(antibodies can neutralize those attacking my legs (shot in the dark but why not!); Many MRI'S but none very satisfactory since I am in a great deal of pain when on my back (1hr MRI's impossible)

and that is where I stand right now. Stymied! The doctor cannot zero in on

my condition without very accurate results and pain causes me to move in the MRI tunnel. I need something to knock me out for a very short time

while I am in the MRI. If I don't get to the bottom of this very soon I will

surely never walk again. Thanks

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Have they tried valium to take the edge off long enough to do test. I know age has a lot to do with what are able to take. I have anxiety, had pain as you say after laying,standing or walking. I can take 2mg tablet an hour before demerit and it helps for about 4-6 hours depending on the day. Prayers going out for you to get some relief. Jmac

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Dear Karnac,

so sorry you are going through this. Neuropathy can come from diabetes or from a pinched nerve in your spine somewhere. Since it is in the upper part of your legs, I'm guessing you have a pinched nerve somewhere around L2-L3. One thing that helps surprising is lidocaine creme or lidoderm patches.  It's amazing, you wouldn't think that 3% lidocaine creme would make that much difference, but it has really helped my left thigh a lot.  Also, ask for a prescription of gabapentin - they will need to slowly work you up to a high dose. If that doesn't work alone, they may have to try adding lyrica.  Or, you could try amitriptyline, which would probably make you pretty sleepy.  Lastly, they may have to just give you some twilight anaesthesia so you can lay on your back long enough for the MRI.  Hope this helps you. 

For immediate relief - try aspercreme - it has 4% lidocaine in it and it's over the counter - you don't need a prescription.  It doesn't seem to be as effective as the prescription lidocaine, but try it.

Also, instead of gamma globulin injections, they could try a sympathetic nerve block at L2-L3. I don't know if you can get this without the MRI. 

Good luck to you good sir.

Linda

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Can you not have an upright open MRI for your back.   I had one where you just sit in chair virtually.   I live in Uk and USA is more medically advanced than us, and so it must be available .

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Wow I didn't know you could have a sit up and go MRI. I am just wondering if or city hospital has one.lots of elderly people in the city and sitting in the waiting rooms astoundedhow many waiting rooms there were. We have a huge room with doors each side wondering what was in them lol. I am du next week so will ask.curious.

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Enna are you from uk or USA?  If in uk...I had my upright MRI privately...

I doubt if it's that easy on NHS .......and they are not all over the place ....London, Birmingham and Bournemouth have centres......don't seem to be in actual hospitals.  Probably take 20 years for NHS to catch up.....

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My I pad is driving me crazy - I have to start again. cortisone injections are really helpful to me. And Dr suggesting I have again 3 injections 3 weeks apart -that helped my sciatic nerve pain. Lidocane is for skin pain. Gabapentin/ pregabolin/lyrics are very similar two of which are the same ..lyrics &pregabolin.

Am I being complicated?

I haven't taken Valium.

I know I took 2 lyrics the other day. And was sleepy. I wouldn't say that it stopped the pain any more

I take 1 + pazital for pain and I still have pain / pazital is 38%ramadol the rest is paracetamol.

Do you have private insurance in the states? I certainly wouldn't be messing about with medication the doctors surely would help you. Be more assertive when you go to the drs.here in Spain patients don't mess about - does it matter how you got it . its what can the do.I have had 3 yes of drs more MRIs than I should have. Registrars when they read your MRI can be wrong I can assure you I have been accused of messing the drs about.

I have 3 herniated discs which are inoperable and just have to take painkillers.lindagkelly is on the right line of things but its difficult as in the states you would pay for drugs and in Spain we pay for nothing if you are a pensioner.

You could be taking lots of things and they may not work. I think personally. I would find a sitting MRI machine. Not sure how it works in the states though.. And take drs advice for nerve block or medication if you can't find one

My yoga teacher used to say when I was in my 50s that no one. Wants to know when you get to 60 and think she was right. Sorry not much help but come into site and let's know bow you get on. One last thing there is a website - american which is fantastic with forum called spine health

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No I am English but live in Valencia.I had 1 or 2 private ones too mainly cos they did not believe I was so I'll.I came to Spain and waiting in the q to get my health card I could have thrown myself under a bus.13 years I have had 3 herniated discs and acute pain. went private also in Valencia but a fusion would have C ost 20,000euros.I just live on painkillers. Why doesn't a Dr do research into nerve pain?? We have a brand new hospital and the poor drs are using second hand printers.why should the elderly not have treatment after the 40 odd years paying into the NHS.no good me paying into health ins now. But I have to say I have had the best treatment here. An injection I had 6 years ago in the base of my spine cost 1,000pounds. You would not believe the crap I got in the uk....what brings you for an MRI? Is it your back too?

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Hi Enna1,

Just wanted to add that yes, lidocaine is a topical anaesthetic, but somehow it helps me with my deeper pain as well. Not sure how, maybe because it is nerve pain. Also, lyrica is not a take it as you need it medication, unfortunately, you have to take it on a regular basis for it to work. And I think it is more for diabetic nerve pain.  It didn't work for me, but the high doses of gabapentin help with the nerve pain in my feet, and don't make me sleepy because I break up the doses during the day, and take the larger doses at night. Also, I can't lay flat on my back either, I have to have at least a couple of pillows under my knees, and I can't just have my feet dangling off of them, so I actually have a wedge pillow and I put another pillow or two on top of that.  Good luck to you. 

Linda

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Hi linda

Interesting what you say,I have heard of lidacaine might have had I lol I have had most things - they don't sometimes tell you do they. No I take lyrics like you took gabapentin big dose at night. It expensive these drugs think someone told me 80pounds. Not working for me. I am on pregabalin or at least I think that's what it says on the box. Afraid maybe because I have been on it for so long it doesn't work and I feel as though I am getting alzeimer my memory is terrible which is a side effect. Gabapentin and pregabalin was brought out for ... Oh I can't think what what it was but a nerve ending disease. I can see it in my min but can't say it. I am waiting for cortisone now which I hope will help me walk better although I did 2 he's in Alicante yesterday but the pain just spoils the experience. The surgeon says too many people have operated so it would be too dangerous which I think is crap I see others in the same situation. Dreading coming out of the EEC and having to come back to Cumbria doctors.

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Hi Enna,

I think the diseases you are thinking of are fibromyalgia and muscular sclerosis.  I have neuropathy and hgave recently tried a different injection since the cortisone did not help me.  I got a sympathetic nerve block between L3 and L4 to help with my right foot, and then on the left side got one between L2 and L3 to help with my thigh.  Theyi both seemed to help some,  so they recently did a radio frequency ablation - where they burn the nerve endings. First for the right foot and then two weeks later did the one on the left side.  Both of them caused my back to be much more sore for a couple of weeks, which was NOT a side effect the doctor mentioned, but more people have told me they had the same thing. But my back is starting to get better and I have had some improvement in my foot and in my  leg. They say it takes 6-8 weeks for the full effect and it's only been about 3. This might be something for you to ask your pain management doctor about. Finally, have you heard about the Nevro SCS? It's a neurostimulator. A lot of people have had a lot of success with it.  I'm holding off because there are some problems with the battery, and I'm hoping that in a year they will improve that.  Good luck to you!

Linda

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Hi Linda

I am waiting for an appointment to have cortisone injections. I actually saw a dr last week, more like a receptionist actually and she took lots of details. Hospital was full in waiting rooms downstairs but not upstairs so was in quick.  I told her where my pain was, its funny, if you have spinal stenosis you have back pain but i don't have that, after 2 hrs on my feet i might have, but not the sort of pain I have. Mine is thigh, buttock and groin.  Anyway my pregabalin was OK, she gave me 3 months supply of meds and also Pazital (both were generic funnily enough) so I am happy (well you know what i mean) Have you gone onto ADRsupportuk website? Alastair who runs the website has ablation and eventually had pain but its an interesting website but not as good as it used to be it seems that once people have the information and their op they don't get back, a bit sad really.  I have had cortisone injections before, as long as I can walk for a bit to lose weight I will be happy. although my daughter sent me some rhubarb fudge the other day !!!  Yes you are correct Pregabalin/Gabapentin and Lyrica were for muscular sclerosis.  I think spain does stronger cortisone than England, she said that he will do 3 on one side and 3 on the other like I had before (except I had 4 in the bad thigh lol) I am suprised it didn't work for you. But as I say, everyone is different.  I am just one Spine Health at the moment and looking at Spinal Stenosis, very interesting, I thought i knew the ins and outs but obviously don't so cut and pasted it and will take bits out to take with me.  Your pain is further up than mine, how did you do it???? I fell down the stairs in my 30s but my daughter has the same and fell off her mountain bike, my mother had spinal stenosis (which I know now) too but she was a supervisor in a grammar school canteen and if anything wanted doing she would lift it.. I can remember her sitting in a chair with a hot water bottle just like me.  Jane has just been to get a new MRI/X Ray in Wakefield so interesting to see what the dr says about her. 

The nerve block you had I have had 5 in England, one cost me £1,000 very strong but only lasted a few months.  Not nice are they.... But spain seems to be going over and over what England has already done and by the time England comes out of the EEC I will be back in England (looks like)  I haven't had nerve endings though, but back in 2003 Its a bit vague what I actually had as no-one spoke to me about things.  Alastair (ADRsupportuk) had ablation and although it worked at the beginning again it wore off but took a while I am not sure what is the matter now. He had a disc replaced phew long before I knew him, at least 2003) which used to be "the thing" but now they don't do it. I know at least 3 surgeons who no longer do it (I think also some people were suing). Do don't do it, I suppose if I was 80dd years old I might think about it lol but then you could live with it couldn't you....

Interesting about your ablation though, did you have a sort of what they call "drop foot".  I know someone who has that too.  I think if you have any needle its sore to start with. Its a couple of years since I had the needle.   I will ask him about his ablation.   I think she said that they are giving me the cortisone to set me off and then will do an investigation as to where the pain is coming from. I know once, a long time ago someone said that my hip was going so it may be there now lol. No I won't have a neurostimulator, as you said there are battery problems at the moment, you must be reading the same as me. I have heard of facet joint replacements too but not over in Spain or England and I don't think they know yet how successful it is until a few years.  Like disc replacement, it was always young people.

You never said where you lived.... I came from Kendal until 2010 when we came to Spain.  

Yes, good luck too, perhaps keep in touch and tell me how you are getting on, what you are trying etc.  We have had terrible internet connection but it clears eventually.  All the best.

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Hi Enna,

I live in Arizona in the desert in the United States. I have lived in the United States almost my whole life except I lived in Germany when I was a toddler and in Okinawa, Japan when I was 19 and 20. My parents were in the Air Force and my first husband was too.  But he turned out to be gay so that was the end of that marriage. But it was a great experience to live in Okinawa - that was in the 70's. I'm  61. I was hurt in a car accident when a woman ran a red light and hit the front of my car and I was knocked side to side. My first surgeon messed me up worse when he did back surgery because he didn't know what he was doing.  Then my next surgery - he did 3 surgeries at once and messed up 2 of them. He messed up my spinal fusion from L2-L5 by not getting the screws in right, so I had to have a repeat fusion which has failed again. And he messed up my left thigh/hip by damaging my femoral nerve. You are on a very mild pain killer -the mildest narcotic- pazital is actually tramadol. You would probably have to see a physician assistant or the doctor to get something stronger, but you probably could. I am on stronger stuff - oxycodone. I don't have drop foot, thank goodness for that. I have a medtronic neurostimluator - it's my second one, but the doctor put it in the wrong place so it doesn't help much.  He purposely put it in the wrong place because there was scar tissue and he didn't want to "deal with it". It's too late now to have it repositioned. They want me to get the Nevro but I won't because of all I have read about the battery.  there was a new post just the other day from someone who got it and the battery was hurting him. The Medtronic battery is very small, but the Nevro is like 3 1/2 inches long, 1 1/2 in wide, and and inch thick. And it has to be recharged every day! I can go 3 or 4 weeks without charging mine.

I have never been to Europe (except Germany as a toddler which I don't remember). I have a couple of things from there - my brother's little German Boy hat, and an antique doll. I would have liked to visit when I retired, but it's funny, you wait until retirement to do things, and then this happens and you can't enjoy anything at all.

Take care,

Linda

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Come on to iPad to pick up mail - I sat too long on the computer. I will write tomorrow bu t I have been to Arizona - 1983!!

My ex and I and daughter did 3 weeks in america in those days it was cheap but travel has got more expensive - have to finish ipad playing up its a real pain, just does what it likes !!! Anne

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Yeah, I get in trouble if I sit too long at the desktop too.  I like my laptop, I can lay on my back and put it up on my lap and my knees and type away. I lived in Beaumont, TX in 1983. I graduated from college that year, actually.  Beaumont is about 100 miles southeast of Houston, TX.  Yes, you could travel pretty cheaply then, and get all of the goodies on the flight too.  Now, you're lucky to get a bag of peanuts on a flight.  But at least you can get food in the airport and bring it aboard.  I remember back when they showed movies on a plane.  And now they charge for luggage! My 2 granddaughters and 2 granddaughters (they each have one) live in Colorado, and I'm lucky that flights there are very cheap - like about $100.00 round trip, so I go to Colorado about 3 times a year.  But at Christmas I went and it was very cold in my daughter's bedroom were I stayed, and I tried to babysit my 2 year old granddaughter 4 days in a row, and ending up hurting so bad, I only spent 2 hours with everyone on Christmas Day and then had to go back to bed and flew home 2 days early - I was surprised to get a flight back for less than $200 on the day after Christmas.

So I got turned down by Social Security Disability today.  They said that even though I have had 5 back surgeries, and I have a failed fusion in L5-S1, and my L1-L2 disc is shot now, and I have all this nerve damage, and I'm on all these pain meds, that I'm fine and I should be able to work at least part time.  It made me so mad! I have lawyers and they told me to expect this, but it still makes me mad.  So the next part is where the lawyers earn their money and we go to court.  Not thrilled about that.  It's ridiculous.  Do you have a disabilitysystem in Spain for disabled people?

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Hi Linda, this is the last posting you did but going through my emails. Sorry for the delay.... mm the company my ex husband worked for had an office in Texas but then its almost like saying do you know Blackpool, I have a cousin ...... you know what i mean. There are big fiestas going on here so we are out much of the day and tired during the night....

We went to California via Freddie Laker, I can't remember how much it cost now but we did the California triangle - as they say - one of the best holidays ever. Don't think you get peanuts either. They only want you to buy more.  Don't they do movies any more ha ha..... Charge for luggage, well they do but then if you are wise you can have a carry on bag free so the heavy stuff goes into that bag - its just lifting it up onto the overhead. Some people get away with murder too - I am sure some of it is over the guidlines.  One place I never sent to is Colorado but seen the colorado river from the Grand Canyon... people running the river.  Think perhaps we saw it lots of times but can't remember, Monument Valley??? So cheap you travel. We go to my daughters in London or Yorkshire. Our tickets are at least 200€ each then we have baggage, then we have to hire a car, insurance, petrol, wow its very expensive.  

Yes, the Chancellor of the Excheque here in England is due to make a speak I think Wednesday but its rumoured that they are cutting down/ or off the social security payments for people with bad backs etc.  I see such a lot of people with sticks in Spain and they don't need them and think are they English and getting benefits.  Now Spain and England have dual information, they can pick you up if you don't pay your taxes or claim benefits when you shouldn't do.  I am sure some people don't need sticks.  

You have had a rough time 5 back surgeries, I had 2 - and a failed fusion. How did they fuse?  Would be interesting. I fell down stairs when I was in my 30s, I had a pr of slippers with leather bottoms and my L5/S1 probably hit the edge of every step.  L5/S1 is the worse I read about L1/L2 is in the middle isn't it?  Did you do anything to get these injuries?

Yes I agree that I am on a very low medication but..... my memory with Lyrica is very bad which is a side affect.  You know I can be planting something in the ground and I forget the name of the plant or I stop writing and forget what I am writing about so I am hoping they may do something about it.  Tramadol well I couldn't take 100%  so they gave me Pazital which is 38% Tramadol and the rest is Paracetamol - I don't sleep well at all but yesterday I was absolutely shot at with gardening so when it came to bedtime I rubbed some ibubrofen on my thigh where it is painful - I had such a good night but I know you arn't supposed to do it - I never know what meds go with what so I am pretty careful.

I have a book in my head Linda and can't sit long to type it out in fact I have post its all over the places that need research..... Cheeky beggers arn't they - if they don't feel the pain they don't know what its like. Perhaps they think you are trying it on and its just one of the ways they work.  Don't take any notice of them. I should be doing the lawyer bit myself but its getting to the laptop can't be long on it.  ipad? Well once you wind it up its a job catching wifi, I lay on the settee and my pad is horizontal above my head to catch it.  We live in a god foresaken village and wish we had bought in a city, but never mind we make mistakes.

As I said yes we do have disability but what its going to turn oout like on Wednesday I don't know. I read that if you can wash yourself, go to the toilet and (forget the other) then you can't have it.  So people will put their pain on to get benefit.  A lot of scheming people are in Spain  I can tell you but then they are probably the same in England but with this dual information now and they are now talking about drones it will not be so easy.  Last night there were Guardia Civil at each road end and last week in the gypsy quarter there were Guardia with battering rams, masks etc. so as it was weekend I think it was all to do with drugs...

Anyway, I will finish now been for a paper so going to read all the lies they have in it so await to see what caused your bad back.  Oh I have schlorosis as well but don't think thats painful ha ha

All the best, keep well if you can. Anne

 

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Sorry replied to your first posting so be back tomorrow...... reading paper to see what everyone is up to.....put into google. "Fallas" Valencia - thats whats going on, you should see the little kids with fireworks..........

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Hi

So I googled fallas valencia and it looks like it has evolved into quite an affair.  Kind of like Mardi Gras down in New Orleans, LA.  I went high school in Alexandria, Louisiana in the 70's and people would go down to  New Orleans for Mardi Gras every year, and every year somebody got killed.  I think people just like to have a reason to celebrate and burn things and most of all get drunk.  Sounds like it is the same the world over.  But the puppets they construct and burn are awesome!  They look like something out of Las Vegas!

So I got hurt initially in 2003 when a lady ran a red light and totalled my car.  I had my seat belt on, and the bottom part held, but the part top didn't and I was jostled back and forth and my spine was wrenched.  I didn't know where to turn to since my general physican didn't want to be involved, so I went to these quacks called Emergency Chiropractic. I am sure they caused more damage.  Went through all the physical therapy and stuff for years, and then had my first surgery in 2009. That doctor turned out to not know what he was doing and he took out half of L5 and didn't know what to do so just left it like it was.  That eventually collapsed so for a couple of years I was leaning 40% to the left, needed a walker, and my right foot stuck out  I went to a TOP SURGEON IN ARIZONA and he did a triple surgery.  He fused me L3-S1 through my stomach. Then he did a surgery on the left side of my spine and put in a "cage" - th is was to make me stand up straight.  I woke up with my leg pulled up to my chin.  The next day he fused me from L2-S1 in the back.  The screws didn't go in right so L5=S1 fusion failed. Had that surgery again May 2014. That has failed again, plus L1=L2 is shot.  But social secuirty disability just denied me again.  The triple surgery damaged my femoral nerve so my left thigh hurts and burns and aches deeply all the time.  I have neuropathy in my right foot which is permanent, and of course all the back pain.  But, I'm GOOD  - I could probably work 3 jobs - why not?

We have a lot of bums on welfare here too.  I know the people in Spain are spanish, I wonder if they are like the mexicans? They overpopulate and then need help feeding their family.

 

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Hi Linda i thought I was bad and had crap surgeons. Adrsupport uk has a list of recommended surgeons but don't think out of uk

Like you I read and read, drs were incinuating I was putting the pain on -here they get extra money for recommending this and that, meds and so forth. My Dr had kids and she used to tell me about them and the dr is alllocated 7 mins to see a patient! Well I changed drs in the practice and when the second one left I lost my confidence. Also england is split into areas - my area didn't have any back surgeons and you could not go out of yr area.so I asked to go to the Walton pain clinic/ Liverpool. He just looked at my x rays and said he could help and gave peter a leaflet about caring for someone. Then it all changed and you could go out of yr area and being a researcher picked this chap 60 mikes away. Told me to research x stop and in space. So I found out everything I could including peek the material they use for fusion is manufactured near where I lived. I also got to know the reps v well. I also found out that when a surgeon uses these widgets the rep usually sta

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Sorry I'm not getting a good signal. ......the rep usually stands in to help!!!! So because they forgot me for 11 months (medical records were sent to India to get typed up secretary rang me to ask what the surgeon said.....say no more so I had the op quite quick its just like a widget to jack up yr spine but like you I didn't work. I often paid to see a surgeon and then went NHS. I had various spine injections after and bough myself a tens machine ...rubbish...lost the flipping lead down a horrid toilet in Spain. Well I had hypnosis and more cortisone injections....peter came home one day upset about clients (financial) moaning so i already has a place in spain so we put our house on the market and then bought a nice flat. My daughter lived with us doing her PhD bless her. It was v traumatic. I decided ha ha that medical things would be better in England so went to a surgeon who again was recommended. I has decompression at 2 levels - it cost me 7,ooo pounds and it just didn't work, I went back and said I still had pain and so I came to Spain a lot of money less where did I go next. It took me months to get a medical certificate but its a bit better than the uk. I did consult 2 private surgeons but it was 20,000 euros although I have the money was it going down the pan the gov surgeon was more concerned with the previous patient when I saw him he said an op was very dangerous but left the door open for me

I am now waiting appt with the pain clinic last time I put a complaint as the nurse was so rude tap tap tapped the computer I walked out. So now I wait ... The private surgeons was going to fuse like you with a cage but if its dangerous I can't do anything. I think they experiment on us.... But I am having to go through the same treatment as in england and by the time that they go through it all I will be too old to do anything else. My mother was like me and my daughter is just the same in fact had MRI 2 wks ago.

Yes any excuse from time off work is ewuasl to Spanish people.the prime minister told them once to have the saints day at weekends but no they have them and then add a day or two either side. The Falla's pronounced fires is a full week. The statues - well they save up for the architects and the local town hall pays towards it too. We have seen one or two magnificent statues Leonardo De Vinci for one but they costs hundreds of thounds and that's just for one. Fireworks are let off all the time by kids and they have a competition for the firework display at 2 every day - they also cost a bomb ...you have to have ear plugs and the noise makes you chest hurt.so tomorrow its the fireworks, we will go up on the train as it will be busy, can't wait ha ha. The statues or ninos always have a political theme but its all in valenciano not spanish.next fiesta is easter but there is usually a fiesta once a month. They dont like south Americans but there are hundreds of thousands of British here some have sold their homes to buy in Spain which I think is stupid especially if we come out of the EEC. We mainly concentrate on the beach,a bit of walking and we have days out and history. I can just about do an hour walking the rest is painful. So much in pain the other week I had my handfbag pinched in Valencia. But I do like it here but miss Jane.yes it is a bit like the Mardi gras with bull fights too every day. My young friend organizes bull leaping which I also enjoy as the bull doesn't get hurt.

You have had an awful time Linda and not your fault do you take lyrica ? It seems to effect me badly with memory loss. You would have thought by now someone would have invented something for our pain, and heres you and it hasnt been your fault. My email is its not so good on this website as I have problems with WiFi.Spain is a good manufacturing country by wi fi is terrible. At least I would be able to see what you say and I can reply , and I can hear what you are doing. If I go upwards I lose my text. So... I am hoping to hear what meds you are on. I am on Facebook too anne barnett. Not sure whether this is an american site. Its terrible on iPad. All the best till I hear from you again did you say something on the spine stimulator??? Anne

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