Is this typical PN?
 

Hi all, I joined the forums a while back and managed to post hello, but I've not really had time to post since then.
Our Dr had diagnosed my hubby with peripheral neuropathy some months ago and has referred him to the Neurosurgeon.
He has been waiting to see the neurosurgeon for 4 months and things are getting much worse.
He started getting pins and needles in his left foot, which then progressed to both feet. Then the pins and needles were replaced by pain again in the left foot, progressing to the right foot. He describes the pain like walking on pins or razor blades. He can't put his feet on the cold floor as it's to intense, but it's the same if his feet get warm they feel like they are on fire.
A few weeks ago his feet and ankles started swelling, even when he is resting they swell.
He is also getting what he describes at electric shocks in his legs and they have also started in his arms. He said the pain from them is very strong and I have seen him in tears from this pain.
Can anyone tell me if this is all typical of PN symptoms as our Dr told us last week that it may not be PN, it could be a rare condition?
Thanks in advance for any help.
Buttercup x

Welcome to our forum.

Can you provide more information? AGE, when this started, what medications have been used? Smoking? etc?

There are many many causes of PN... and without some detective background, it will be difficult to say.

Some spinal damage may be at fault. Slow onset diabetes, use of drugs (some very common) can cause PN. Low thyroid, some bacterial infections, exposure to toxins/metals or solvents. Autoimmune reactions esp after a vaccine. Many Many causes.

Thank you for the quick response Mrs D :)
My hubby is 44. We think his symptoms started around xmas time last year.
He is a recovering alcoholic and has been abstinent for 14 months. This is why we are unsure of when the symptoms first started, as they may have been masked by the alcohol and his initial recovery.
Our Dr did think that it was alcoholic PN.
Mark has had blood tests (a few over the last couple of years). At one point his liver function was affected, but it now normal. He was also tested for B12 deficiency, thyroid etc and all came back ok.
He is also being treated for depression and psychosis. His depression seems to be getting worse again, which I put down to his constant pain and feeling his every day life has ended, as there is very little he can do any more.
His current meds are:
Mirtazapine for depression.
Quetiapine for psychosis.
Pregabalin for PN.
Tramadol to help with pain.

Hope this helps.
Can I please ask, is it normal to get this very painful electric shocks with PN?
Thank you once again
Buttercup x

I have had the painful electric shocks quite often, more often the milder ones. Has he had an EMG lately? My electrical shocks are horrible for the first few weeks after an EMG. It seems to stir things up.
They did settle down somewhat when I went up to 1800 mg of neurontin.
I have hereditary neuropathy, CMT.

I would agree that after EMG or even exam with tuning forks etc my nerves were stirred up. I also suffer from painful electric shocks.
The frustrating part for him will be the snails pace of the NHS, the stress from sitting on waiting lists can also add to the symptoms. I wish him well.

The Quetiapine (Seroquel) is capable of altering blood sugar and raising it. I'd get that checked out ASAP.

I would also get the actual test result from the B12 test. Doctors are still using the old outdated lab ranges, and his "ok" may in fact be low.

Once people who were heavy drinkers, stop, and restore nutrition, any PN present typically can resolve. Benfotiamine (or regular thiamine) may also be helpful for him.

http://neurotalk.psychcentral.com/post653193-4.html

It is possible that all the sedative medications he is taking, are producing a "sedated, or depressed" constellation of side effects. Please keep that in mind.

And--
 

--it would be unusual for there to have been a referral to a neurosurgeon, as opposed to a neuromuscular specialist, unless there was a suspicion of spinal problems (even in the UK I think this would be true).

So, has there been any imaging done to see if there are problems with the spine or adjacent nerve roots?

Thank you all so much for your responses!
He has had no other tests done, only bloods which I've outlined above.
What the specialist will do, we don't know.

I'm really starting to doubt that this is a problem related to when he was drinking, as he has not touch a drop of alcohol for 14 mths. I do have to add I and our children are very, very proud of him!

Mrs D, I will telephone the Dr's tomorrow and ask for the B12 results figures. Is it ok if I come back to you with them?
I have to be honest, I don't really understand the terminology that is used in the forums and the names of treatments and meds means very little to me :o

He has had an on going back problem, which always seemed related to lifting heavy loads. Since stopping work last year his back has been fine.

Thanks again you lovely people for your help.
With kindest regards
Buttercup x

Yes, come back with the numbers and concentration. I believe UK reports a different concentration... pmol/l instead of pg/ml.

I have a conversion factor to change to U.S. concentrations.

Hi Mrs D, I have two of my hubby's Vit B12 results:
October 2010 202
April 2011 264

I hope you can make sense of this, as I don't have a clue.
Thank you once again
Buttercup x

I also need the concentration report that follows the numbers.

If in Britain you use pmol...the conversion is 273 US units for October
and for April is 357.

If they are pg/ml no conversion is necessary.

Both readings are low, so your hubby would profit from using some supplement. I don't know what you have there in UK, but iherb.com will ship to you.

Ideally methylcobalamin would be the one to get. At least 1mg (1000mcg) dose daily or more orally on empty stomach.

Cut of for normal is 400. People with neuro symptoms can profit from being above 400.

Here is my B12 thread:
http://neurotalk.psychcentral.com/thread85103.html

The conversion is on that thread:
post #43

This is a total conversion table from SI (outside US) to US units.
http://www.unc.edu/~rowlett/units/sc...ical_data.html

Hi again, I have read your tread on B12 :)
I am going to start Mark on B12 tomorrow.

How long does it usually take to see if there are taking effect?

From what I have read it looks like there is little risk of taking to much, but don't worry I will follow the instructions.

You have all been so much help, I now pray that this will help to give Mark some relief.
Thank you once again :)

People vary in their response. Some get quick results, and some it takes weeks/months. I guess it depends on how long the deficiency was going on. The longer the damage the longer the results.

There are no studies showing taking high B12 is harmful in any way. Just make sure he takes on an empty stomach even if it is sublingual, because one does swallow the saliva containing it.

You can check in here anytime with questions and/or progress reports.

We are so grateful for all your help!
I have now suggested to Mark that we book him in for another B12 blood test to see where we are now.
As he was addicted to alcohol for years, I am wondering if his levels are still rising after being abstinent for 14 mths.
He stopped drinking in July 2010 and his B12 was 202 in October 2010 and had risen by April 2011 to 264.
I will be glad to drop by and let you know how he is getting on :)
At the moment he is in bed quite a lot as the pain is just to much for him.
I have made a bed cradle to keep the bedding off his feet, but I really cant think of anything else to do to make him more comfortable.

Thanks again, you have given me renewed hope xx

Does he smoke? I don't recall your telling us?

If so he needs evaluation for peripheral artery disease.

Yes these are typical PN symptoms. I'm sorry you and your husband are in this position. Sounds like you need to go after a cause aggressively. It's too bad that most doctors know little about this. The alcohol sounds quite possible. There are several books out on neuropathy, regarding what has helped some folks.

Also see my two documents here:
https://sites.google.com/site/basicpoke/Home/neuropathy

I scanned these from a book in the Numb Foot series, don't have the name at this moment. Supplements that have helped me are evening primrose oil, alpha-lipoic acid, and magnesium.

Good luck
Electron

Yes he does smoke and has done for many many years.
We have both tried giving up a few time, but something always seems to go wrong when we try. We tried a couple of months ago and his mum had a stroke, and we have since found out she has lung cancer, which is not looking good as it's an aggressive strain.
I have said this should give us both a kick up the bum, as if his mum has it there is a greater risk he will get it too!

I have never heard of peripheral artery disease, is there a link you could give me or point me in the right direction?

Thank you kind lady xx

Thank you Electron, I will have a read up on this tomorrow.
Although we have explain to the Dr how much pain Mark is in, he can not get us into see the specialist any sooner. Mark's appointment should have been 30th Sept and has now been put back to 14th Oct. My poor man had tears in his eyes when he read that.
There is not a resident neurologist at our local hospital, so it seems as though we get second best :(
Mark said he would have his feet off if it would get rid of the pain as it's so bad.
It breaks my heart so see him suffering day in day out, and I don't think it is doing our children much good either. They are 12 & 14, therefore they can see how much he is suffering.

Sorry for going on and on, just needed to vent a little.

Thank you for your kindness xx

Hi Mrs D. the last B12 lab I had was in April. The result was 542. What do you think? I am getting very confused on whether to take supplements or not. Currently, I take nothing. I have had so many doctors tell me not to bother with them. Even one who told me to throw them in the trash. I am not sure what to take. I just had my vitD checked I don't remember the number but it was WNL. Are there any supplements that you believe are a must if you have neuropathy? I don't even take a daily anymore because I was having such stomach issues. I would like to start adding one back at a time. What is your best advice for supplements? Hope you don't mind the questions. I have so many. hopeful:)

Smoking affects men more than women, in the area of the legs.

I think getting a doppler/ultrasound of the legs is a good idea.
Your doctors may think he is too young... but really when pain is this bad it may reveal blocked blood vessels.

http://en.wikipedia.org/wiki/Periphe...scular_disease

Your reading is borderline. According to Dr. Snow who is an expert on this subject --- post #70 in my B12 thread, some people NEED higher levels. He says that if you have neurological symptoms, and are fairly normal it doesn't hurt to take extra B12...since you may have a different genetic way of handling the vitamin.

You could start with 1mg daily on an empty stomach of methylcobalamin...it is inexpensive, and safe to do.

The autoimmune type PNs may respond best to antioxidants, which help reduce inflammation. Fish oil, and grapeseed extract or a Curcumin with enhanced absorption. Eating foods with lots of color like strawberries and blueberries also helps.

B12, B6, folate and fishoil are known to help remyelinate damaged axons, so may help healing the areas damaged by the autoimmune attacks.

Thanks Mrs D. I am going to start with B12 I have some here already. I also have B6. I will add the others one at a time hopeful:)

Thank you Mrs D & Electron for your help.
I think I should get Mark booked in for an other appointment at the Dr's and see if he will send him for an ultra sound.
He has a lot of thread veins in his legs and a concentration of them around his ankles. He has some nasty looking larger veins in his legs too.
His feet do turn some funny colours, from being white, to red and purple. The Dr's has seen the colour change for himself.
I will let you know how we get on.
Buttercup x

I have those colour changes in my feet also, my neurologist said it was all part of PN- the messages to add or remove blood from the feet are getting mixed up was how she described it.
Tips from this forum that have helped me most are Alkaseltzer(2 at bedtime keep the pain at bay so that I sleep), steeping feet in Epsom salts in lukewarm water for at least 30 mins and my latest addition is theanine at night( wonderful stuff;)).

Yes, I agree about the theanine. I am going to increase my dose from 150mg to 200mg at night. ( I bought my refill at Swanson's and those were 100mg caps ..so I will take 2) I find it lowers my blood sugars during fasting! It helps me sleep, and I have less burning. I rarely have the horrible burning anymore!

It does not help arthritic pain however, so far, for me.

Hi again all.
I'm getting very concerned about my husband, his pain is getting far worse and it seems things are changing so quickly.
The electric type shocks he is getting from his feet and up his legs is much stronger, bringing tears to his eyes at times.
The electric shocks are becoming more constant in his arms and hands. When he is sleeping he rubs his hands together quite a lot and moans loudly some times when he stretches his arms.
Since Monday he has been in bed almost unable to walk at all as the pain is so intense. I have to take him to the bathroom as his balance can be unsteady. For the last two days when he has been urinating the flow is stopping involuntary.
This afternoon he has started getting the electric shocks in his shoulder joint, which is making him cry out.

The occupational therapist came out to see him yesterday for the first time. After her assessment she has suggested he use a wheel chair outside and a stick in the house along with other aids.

Our Dr came out to see him today, he has increased his pregabalin to 300mg in the morning and 300mg at night. He has also told him to take 2 x 30mg dihydrocodeine and alternated them three hourly with 2 x 37.5 tramadol.
The Dr was going to fax a letter this afternoon to the neurologist to see if they can bring his appointment forward.
It's so difficult to have to watch my hubby in so much pain, and it's also affecting our children.

I am not a Dr but since this is coming on so fast it makes me think of poisoning or an autoimmune response (the body attacking itself) like Gullain-Barre (spelling?) etc. It doesn't sound like a chronic long term problem like diabetes or vitamin deficiency. Obviously you need to get into see someone quick. I have doubts that a local neurologist will be able to help but I may be wrong. You might want to visit Mayo Clinic or one of the other good neuropathy centers, I think there is one in Cleveland as well. Make sure he is eating lots of fruits, vegetables, and whole grains, and exercising as much as possible. And drinking lots of water. I'm sorry, wish I could help. :(
Electron

Hi Electron, thanks for the response.
We are in the UK, so all's we can do is await an appointment from the Neurologist. Because of our location we don't have a resident neurologist at our local hospital.
I've started to question this myself. I'm wondering if the PN pain is masking another problem, more so as things are changing so quickly.
He is having difficulty walking to the bathroom and waits until his bladder is bursting, therefore any exercise is out of the question at the moment.
Since I posted the other day he is getting the very strong electric type shocks in his ankle and kneed joints too.
The pain meds aren't doing much at all:Sob:
If he is not improved by tomorrow I think I will have to get the Dr back out and request he is taking into hospital.
Thanks
Buttercup x

Is this pain only in joints? PN doesn't do that. The pain may radiate down a nerve and may feel like a joint now and then, but PN pain is more global as a rule.

Pain only in joints suggests some inflammatory problem.
Urinary problems may come from the drugs he is using, as a side effect.

I think his doctors should be more involved and aggressive in finding a cause.

Hi Mrs D, he has the pn pain, burning, over sensitivity etc, also these electrical type pains. The pains in his shoulder, ankle and knee have only started this week.
The pain he is getting in these area's is different to the other pains. The only pain he can liken it to is, if you put your hand in snow or ice but more intense and painful?
Even though the Dr is concerned there is little more he can do if the neurologist will not see Mark sooner.
I feel the only other alternative will be to get him into hospital, which Mark is reluctant to do in case they transfer him to the neurology hospital which is about 45 miles away from our home.
Thanks Mrs D
Regards
Buttercup x

Hi Buttercup
I am also in the UK and it has taken me three years since diagnosis to feel as though I am actually getting someone listening to me - I hope your experience is better but my experience is that as long as referrals meet the 12week target of being seen you then are left to get on with it. I would recommend you try your best to get Mark admitted to hospital, even if it is 45miles away.Good luck.

You know, it is a terrible thought, but severe PN in a person like this progressing rapidly, could be paraneoplastic.

Certain cancers cause PN like this.

Has he had a chest Xray?

http://www.uptodate.com/contents/par...rve-and-muscle

I also meant to add the best thing my GP done for me was to refer me to the Chronic Pain Clinic, they took the time to look at my history and treat me, it has been very successful - you may find they will be able to do more for your husband than the neurologist - just because they give a diagnosis doesnt mean they will be able to provide a treatment but the Pain service treats the pain:)

Thank you for this info Mrs D. I have checked out the information on paraneoplastic and thankfully I don't think Mark fits this? The Dr did ask Mark if he had visual disturbance or headaches etc.

He did have a chest X-ray about 3 mths ago, as the Dr suspected he had COPD. There was signs of COPD, but he had the blow tests done and the results were mild COPD.
I'm not going to let this lay, I will be back on to the Dr's if things don't start to settle down.
If anything else comes to mind, please let me know.
Hope your feeling better
Buttercup x

Hi Malawigirl, It's over 12 wks since Mark was referred to the neurologist. I did speak to their department which is in Liverpool to ask how long he would have to wait for an appointment and the girl the other end shouted "how long is the waiting time in Wales!" She told me 3 mths, but when his letter first came they wanted him to wait until the end of Nov', I told them he couldn't wait this long and we would travel to Liverpool for an earlier appointment. They then found an appointment in our local hospital for 30th Sept', which has now been changed to 14th Oct'. Poor Mark almost cried when he read the letter!
I could see on Thursday that our Dr was not happy with the way Mark is suffering, but other than him faxing off a letter to the neurologist there is little more he can do.
I can't understand why they have not referred him to the pain clinic? The would seem a normal process to me!
Thanks for the input :)
Buttercup x

I'm so sorry
 

I am so sorry to hear about your husband, Is there any way to get him to a Emergency room, that's what I did last week and they put me in the hospital immediately, I was able to get help very quickly, they did so many tests, sometimes it pays to go through the ER. I hope he feels better soon. Blessings, Jan