NeuroTalk Support Groups - Would Like Some Advice Dealing w/my PN

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- - Would Like Some Advice Dealing w/my PN (https://www.neurotalk.org/peripheral-neuropathy/227831-advice-dealing-pn.html)

Quote:

Originally Posted by Ragtop262 (Post 1179829)

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.

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

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

Quote:

Originally Posted by itburns (Post 1179636)

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.

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.