Would Like Some Advice Dealing w/my PN
 

Hello,

In 2003 I had corrective surgery for scheuermann's kyphosis. My entire thoracic spine was fused.

About the beginning of this year I started experiencing loss of motor control in my right hand, along with tingling. I had an MRI of my cervical spine and it showed stenosis. In January of this year I decided to get a laminoplasty of my cervical spine.

The surgery resolved the issues in my right arm. I started to experience paresthesia in my abdomen, the sides of my groin, thighs, and tops of my feet. On my followup with my surgeon he told me my PN could not be a result of my laminoplasty.

I got an appointment with a neuro who prescribed me 50mg/3x a day and an MRI of my lumbar to see if that was causing my PN. Unfortunately all the metal from my kyphosis surgery obscured the results but I can post what they found below:

MRI SPINE LUMBAR WITHOUT CONTRAST: 9/4/2015 5:00 PM
HISTORY: PARESTHESIA, history of Scheuermann's kyphosis and corrective surgery at age 18 affecting his thoracic spine, paresthesias down his legs
COMPARISON: Lumbar spine MRI 01/11/2012
TECHNIQUE: Appropriate pulse sequences were employed in multiple planes.
FINDINGS:
This study assumes five lumbar type vertebra.
Alignment: Alignment is within normal limits.
Marrow: Significant susceptibility artifact emanates from spinal fusion hardware in the visualized thoracic spine extending to L2. Evaluation of these levels is essentially nondiagnostic.
Conus: Obscured by susceptibility artifact.
T12-L1 and L1-L2: These levels are obscured by susceptibility artifact and evaluation is nondiagnostic.
L2-L3: Partially obscured by susceptibility artifact. Sagittal images demonstrate no evidence of spinal canal or neural foraminal stenosis.
L3-L4: Trace disc bulge without spinal canal or neural foraminal stenosis. Mild bilateral facet degeneration.
L4-L5: Disc degeneration with mild loss of disc height. An annular disc bulge has a superimposed right paracentral protrusion/fissure. The disc material indents the ventral thecal sac without causing significant spinal canal stenosis. Mild bilateral foraminal encroachment is stable. Minimal facet degeneration.
L5-S1: Disc degeneration with mild loss of disc height. The previously seen left paracentral disc protrusion has resolved. A small annular disc bulge flattens the ventral thecal sac without causing spinal canal stenosis. Mild bilateral facet hypertrophy with slight right neural foraminal encroachment.
Sacrum: Normal appearance of the visualized portions of the sacrum, without evidence of acute fracture or suspicious lesion.
Soft tissues: The paraspinous soft tissues and visualized portions of the retroperitoneum are unremarkable.
IMPRESSION:
1. Interval resolution of the previously seen L5-S1 disc protrusion.
2. Mild degenerative disc disease L4-L5 and L5-S1 without spinal canal stenosis or nerve root impingement, otherwise unchanged.

The neuro told me there was no impingement and I assume the cause of my PN is unknown. I think something happened during my last surgery.

I'm wondering if now I have to deal with PN for the rest of my life and if it will only get worse.. I've been suffering from depression this whole year and was hospitalized for suicidal behavior. I'm currently getting Electro Shock Therapy and wondering if that affects my PN.

I have a followup with my neuro next week, as well as my surgeon. Is there anything I should be asking them?

Should I be taking supplements? Avoiding things like alcohol? Any advice you think would be helpful I would be happy to hear. Sorry this was so long.

Hello itburns,

Sorry you find yourself here, but welcome.

Like a lot of us, you appear to falling into the idiopathic PN black hole. There is a cause, of course, but it's escaping current medical diagnostic capabilities...or the right tests just haven't been ordered.

I have a lot of spinal issues as well, but nothing that explains the neuropathy. Still, could something be going on that they just don't understand yet? I certainly think so. Or it also could be something completely unrelated that is also escaping detection by all the tests I've had done.

I guess the only input I have is to not let your spinal issues obscure the possibility that your PN is being caused by something else. Here's a list from Mayo:

http://www.mayoclinic.org/diseases-c...s/con-20019948

Blood sugar issues and B12 are biggies. If you have unknown problem with the former, dietary changes could help. And yes, reduction of alcohol consumption could help as well.

Supplements could possibly bring you some relief, but it's a bit like throwing darts. MrsD has a nice thread discussing various ones you can try.

http://neurotalk.psychcentral.com/thread121683.html

I wouldn't expect a neuro to be terribly encouraging of taking supplements. At least that was my experience. My integrative medicine doc encouraged lipoic acid, though. All the others ones I'm taking I learned about on my own, and many from this forum.

If it offers encouragement, my idiopathic small fiber neuropathy has not worsened in two years. My symptoms seem to morph and change on a whim, but I don't think they're worse.

As far as your appointment goes, make sure your neuro has ruled out all the other possible causes. And don't let him gloss over the blood sugar ones. It seems doctors aren't raising red flags when some people are pre-diabetic. You don't have to be a diagnosed diabetic to have neuropathy caused by blood sugar.

So you do have metallic hardware in your spine?

There are some people who are intolerant of devices and metals
in various replacements for joints and fusions.

If this is the case for you, there is not much you can do about it
I am afraid.

Do examine your lifestyle for toxins, heavy metals, glucose metabolism, various drugs, and vaccines. Some food intolerances can cause burning. The Nightshade veggies are one group of foods that can cause burning. MSG in processed and restaurant foods is another.

@janieg Thanks for the welcome. Yes, I do feel I'm never going to get answers and if I do know the cause... If the nerves have been damaged I do not know if they can be healed. I feel like I've lost my way of life at 30 years old. I think my PN is caused by my last surgery because coincidentally it showed up after my laminoplasty.

I will get my blood tested. See if I have below 400 b12. I will look into mrsD's recommendations for supplements. My last neuro told me to stop taking a multivitamin because I had high levels of b6.

@mrsD Yes I've had metal in my spine since 2003. I am confused though as I didn't start to develop PN until the beginning of this year. The drugs I am taking are effexor 300mg, lyrica 50mg/3xday, and trazadone 50mg for sleep.

The amount of B6 in a multivitamin is not very large.

But if you did not stop all vitamins several days before the test, it will show false elevations. The ranges were made with volunteers who were not taking any vitamins at all.

What was your B12 result?

@mrsD I unfortunately don't have access to my last lab results, but I'm getting more blood work done in the coming weeks. I can report back then.

Hello itburns, welcome to the forum.

It seems like you've had quite a few MRI's, but were any of them done "with contrast"? I've read several horror stories about neuropathy type issues occurring after MRI's using gadolinium contrast fluid.

My own PN symptoms changed and became more severe after getting an MRI with gadolinium contrast. I don't think it "caused" my PM, but it certainly didn't help, and I think there's a good chance it made things worse.

One thing they didn't tell me when I had the MRI was that you should drink a lot of fluids afterward, in order to flush the gadolinium out of your system as soon as possible. Gadolinium is very toxic, but it is bound to a cheleating agent that keeps it from depositing in your body and allows it to be flushed out through your kidneys. But, if it stays in your body too long, more will escape from the cheleating agent and stay in your body, where it then becomes very difficult to get rid of.

The metal medical devices, are changed over time. So the earlier surgery could have used a different alloy.

What we see here from others who have had procedures done, MRIs can be problematic with that contrast medium ragtop mentions, and endoscopes are alarmingly increasingly becoming contaminated and not adequately sterilized so patients may be
infected with "who knows what" .

I had a new crown made for a molar last Jan. The temp my dentist put on was made of steel/nickel. One night some salt or something reacted to it, and the gold crowns above, and one mercury silver... and I had a two beat throb...in that tooth, followed by what I can only describe as an electrical jolt that went to my neck and down into my chest affecting my heart beat. I almost lost consciousness, and it took about 5 minutes for my heart to stop racing. It was an awful experience, so I looked it up...

http://toothbody.com/is-there-a-battery-in-your-mouth/

I was using a salt substitute (Morton), which has fumaric acid in it (why, I had no idea)...I can't use salt, so at dinner I use a small amount of this product. My dentist has never had anyone report something like this either. But it happened to me.

Weird things happen when metal gets into the body. I switched to NOW brand salt substitute...it does not have acids in it. But it was a painful frightening lesson to learn for me!

Try a search on Google... I found this one by doing
metal implant reactions:
http://www.arthritis.org/living-with...-allergies.php

I saw many other sites with discussions.

Some people will react to foreign bodies in their bodies, more so than others. Everyone is different.

Do see that your B12 is above 400pg/ml, and your Vit D at least at 50, and that you use some form of magnesium supplement, either the new lotion, or a good oral form (not oxide type), and see if you feel any difference.

@Ragtop262 My last MRI was without dye. I did have a CT Myelogram before my stenosis surgery. They injected the dye into my lumbar. Now that I think about it, I did feel tingling in close to my groin during the procedure. I've read stories about myelograms causing arachnoiditis. I will add that to my list of questions causing my PN to my surgeon and neuro.

@mrsD thanks for the info. I will definitely get those levels checked and those supplies. :)

itburns, yes it did burn and tingle for me for about 5 yrs after hip replacement MESS. I ended up with Femoral Nerve Damage and just lived with the burn/tingle until a naturopath gave me 4 suggestions on what I could try to eliminate the burn. I chose Inosine and Sphingolin and these have pretty much given me a burn free thigh...still very numb as I guess the nerves are so damaged and if they ever come back, who knows. I am much older than you but have a pretty old back with a lot of degeneration, but I just deal with it and choose to do no back surgeries. I've heard enough stories on those.

I ended up with spinal stenosis from surgery and did a lot of specific PT and learned specific stretches for that area. I'm pretty good there considering where I was. Rheumy did acupuncture on that area for a year or so and then I did some more at a clinic.

I don't know how old you are but I'm 77 and have had back, mostly lower, for about 60 yrs. But somehow I got thru it all. Was very active for most of my life and it started to catch up with me in my 60's and then bam with the hip replacement. So we all have our stories and how we have managed it all and yes we're all different. I take quite a few supplements for EVERYTHING which includes joints. C

I had several CT scans and MRI scans with contrast before my SFN came.
Any idea on how to de-tox?
TIA

Here is one site on listing symptoms of gadolinium toxicity:

http://gadoliniumtoxicity.com/help/symptoms/

There are more on the net.

http://gadoliniumtoxicity.com/2015/0...-enhanced-mri/

http://www.chelationmedicalcenter.co...avy_metal.html

hello all,

just having a really rough day. dont know if my PN is getting worse, but it seems to be spreading into my abdomen & lower back today. i figured i'd give a little update.

saw my surgeon yesterday. i also spoke with the woman who administered the contrast dye for my ct myleogram a few months ago. i asked her if the dye has ever caused PN. she seemed pretty defensive and said the worse thats happened is a headache that lasted a day and the dye completely leaves your system within a few days. i didn't mention gadolinium though.

when i spoke to my surgeon he took a look at my mri. he said the report was benign, but looking closer he noticed some bulges at L4, L5, S1 and said those were likely the cause of my PN. he said the first thing i need to do is a EMG with my neuro. he did not recommend surgery. he said potentially i could do steroid shots in my lumbar and wait and see if that has an effect on my PN. has anyone had experience with shots? effective? makes it worse? no response?

i'll be seeing my neuro the 19th. i have a list of questions compiled from this thread and my own research. will ask for blood work among other things. i appreciate everyone here and hope you are coping well with your PN. i wish you the best.

I live with a degenerative back going on 60 yrs and have learned to live with it. With aging all backs begin to degenerate. I've had 2 scripts for steroid shots and but never did them.

If they work, it's temporary and some end up with a series of 3. These steroids are the best and worst drug and do break down the bones.

I take a lot of joint supplements, mild exercise and daily stretching and don't deal with the classic neuropathy many have here. Mine is from a hip replacement in 2010 where I was left with Femoral Nerve Damage. The burning is now gone since I took Inosine and Sphingolin for 3 months and I've talked about these here. I take 50mg B6 daily and so far the burn has not returned. 80% of my thigh is numb and I'm going to buy a Tens Unit soon to use at home.

Chiropractors can help, acupuncture can help. I do not want back surgery so do all I can to keep going at 77. Wear back support, knee support and foot/ankle support. My body is all messed up due to hip surgery. C

thank you for sharing your story, caroline. that's troubling to hear that the benefits are only temporary and they could weaken the vertebrae. i'll be sure to ask about that with my neuro.

i was looking at inosine and sphingolin online. if you look up the results on amazon, would that be a good source to buy? what dosages would you recommend? the brands are ecological formulas and source naturals:

Ecological Formulas - Sphingolin 200 mg 240 caps,
Source Naturals Inosine, 500mg, 120 Tablets

Hi, I know amazon sells the two supplements you ask about. I bought mine from pureformulas.com and recalling I took 1 Sphingolin daily and 1-2 Inosine daily. Did both these for 3 months and the burning left my thigh. We are all different so why not give it a try. One of our other members here takes Inosine that I know of. Maybe others do but I don't that for sure. There is a separate post on these here. C

i read up on scheuermann's kyphosis, it a pretty serious disorder, in male teens. I think the spinal damage from the kyphosis, or from the surgery is the cause of your Current pn. High B6 is toxic, and can also cause neuropathy as well.

Hi itburns,

There has been discussion regarding the relative safety of sphingolin on the Vitamins Forum as it is derived from bovine spinal cord. The risk of contamination and contraction of vCJD should infected source materials be used is high.

Here is a link MrsD found, warning of the risks:

http://www.centerforfoodsafety.org/i...in-supplements

Dave.

We all think so different don't we. I worry more about the lab meds and all their side effects. I'm glad I tried both these as the Burn is gone.

@neuroproblem yes, < 1% of the population gets scheuermann's. i guess i was one of the lucky few. :) why do you think the PN is caused by the kyphosis or the surgery? i didn't have signs of PN for years after my surgery for kyphosis. it wasn't until i had my surgery for the stenosis in my neck that i did. as far as the b6, all i was taking was a simple multivitamin. its strange to think that would cause my PN.

@englishdave i remember reading about mad cow potentially being in sphingolin. thanks for reminding me. i think i will just take the inosine for now, but i'll consult my neuro before i start taking it.

There are so so few mad cow issues. Maybe neither one of these 2 will help you. When one has a fear and resistance about taking something and I have those with pharma meds, the mind can make us crazy. I've been eating meat all my life and I'm 77. Never sick from any foods I've ever eaten. So much fear out there.

I'll not get to know IF Kratom will help me as one member here talked about the side effects, one being constipation...I don't need to go there. My bowels are in good condition so I have to pass on this herb. But I'll add some to my topicals I make.

Wish you the best whatever you do. C

The incubation period for vCJD could be as long as several decades (30 years). The UK has put in stringent Laws and regulations to exclude bovine neural tissue and contaminated meat from the food supply. More has been done to ensure the safety of medical products, like bloods and derivatives for transfusions.

I can see an epidemic of vCJD, or another equally horrific disease, caused by the lack of testing and regulations on products which open a 'back door' to infection.

To clarify the severity of vCJD:

http://www.prion.ucl.ac.uk/clinic-se...prion-disease/

Dave.

In Australia we can't donate blood if we lived in the UK for 6 months or more between 1st January 1980 and 31st December 1996 or if we had a blood transfusion in the UK any time since 1st January 1980.

There is no screening test yet developed so they have to do this.

http://www.donateblood.com.au/faq/el...-blood#mad-cow
Mad Cow - Variant Creutzfeldt-Jakob disease (vCJD)
Red Cross Blood Service Au

I am affected by the blood donation rule that Lara has explained.

My risk is small but I think that it is a prudent rule.

An analogy which may help is that before effective methods for assessing HIV infection were developed, many people (including the late great Isaac Asimov) died because they got a blood transfusion from an HIV-infected donor.

In my view "better safe than sorry" is a sound plan.

Hello everyone, just a brief update from me. I saw my neurologist yesterday and he gave me his opinion on my PN. Overall he was hopeful that my symptoms could be managed or resolve in the future. He suggested upping my Lyrica and doing physical therapy. He had a look at my recent MRI and said that although there were some bulges in my lumbar, they were not large enough to be concerned. He was wary of steroid shots as we haven't exhausted all options for managing symptoms. I also had my blood work done and should get my results next week.

His opinion was my nervous system was over reactive due to all the trauma from previous surgeries. He said he was curious about the hardware in my spine affecting the nerves.

Hope you are all doing well and living happy lives.

That is good to read itburns :).

It sounds to me that your neurologist is on the ball.

I hope that the blood work results give you and him ways to work out how best to move forward.

Thank you kiwi. I hope the blood work gives us a point to go on. If not, that is ok too. I have been reading more about how the brain processes pain and it has made me realize that the less stress I put myself under, the more likely I am able to manage my PN. I'm trying to remain hopeful/positive. All of you help as well.

Take care.

Hey all, I just received my sphingolin and inosine supplements. I'm considering returning them through amazon. I've read mixed things about the two, prion infections with sphingolin and increased uric acid levels with inosine.

I think I am returning the sphingolin for sure but am considering taking the inosine. What do you suggest?

Well, I took both for 3 months and no problems except the burning issue is still gone from my thigh where surgery incision is. If the burning returns and it has not, I'd take them again for a while. I wouldn't take them for years, only thing I take for years is thyroid support and BP meds and ibuprofen and many other supps like magnesium for sure. Grape seed extract 20 yrs. This antioxidant is doing me good and no side effects and I continue into my 21st year.

Obviously we think differently as I fear the pharma drugs and every ones comes with a list of possible side effects and from reading so many posts from so many people who have so many side effects with drugs.....I don't know what to say to you. I know how I feel.

What I have done over the years of taking my supplements, I call the producers and ask if they have a resident product specialist and ask them questions that concern you. I just don't believe companies would take chances to harm people and they do their research on all they offer patients. As I said a naturopath gave me 4 supps to consider and I chose the 2 you are talking about. And I know many here won't consider these but everyone makes their choices. I would not consider the drugs. This is me.

You talked about the hardware in your spine, my downfall has been the hardware in my hip from hip surgery. I would not have all the nerve damage and dead nerves if it were not for the surgery.

Obviously the choice is yours, but you could not pay me enough to take sphingolin for any reason. Personally, I would return it.

Dave.

I agree with Dave about sphingolin. It seems to be a product extracted from cow brains which is advocated on many comp/alt med sites. The biggest risk with it is that if any of those cows were infected with the pathological form of prion protein (none of the comp/alt sites comment on whether this has been tested), it will kill you. There is nothing in any serious site (eg, PubMed) which suggests that sphingolin is of any clinical benefit. I would not touch it with the proverbial barge-pole.

Inosine is less clear. It is a nucleoside which is usually made from another nucleoside called adenosine. There are (very rare) conditions in which it may be indicated but if they do not apply to you and if you eat in a healthy way (your GP should be able to help here), I see no reason to eat it. Unless the evidence suggests otherwise, I think it a waste of money.