[Dutchgirl]

Dear everyone with neuropathy,

I've been reading your posts on this forum for a while now and thought it would be time to post my story. My diagnose is not yet complete, but it is very likely that I have small fibre neuropathy. The emg was all right, but I have typical nerve symptoms (burning, pins and needles, and some kind of dull pain) everywhere in my body, mostly in buttocks and legs/feet. It's unbelievable, one year ago, I was (seemed?) a strong healthy young woman, now I have these symptoms which make me feel absolutely desperate. The weardest thing is, how these symptoms developed. It all started with a treatment for a hemorrhoid!! I got injected with aethoxysclerol (according to the "doctor"...) and immediately after that, I felt stinging near my tailbone. This went on for a couple of weeks, than became less, but later the stinging en burning spread to my buttocks en after that, in a couple of days, I felt stinging everywhere in my body. I know for sure that the injection was the trigger of the disease. To make my point more powerful: another patient of the "doctor" who got the same treatment, developed also a complex pattern of nerve symptoms!

I have two hypotheses about the development of this disease:
1) A nerve was hit by the injection and got inflamed. The inflammation spread to the rest of the body (like an autoimmune response of the body to an operation). (See e.g. the article of Mayo Clinic "Inflammation causes some postsurgical neuropathies")
2) A nerve was hit by the injection and the wrong fluid or more fluid than is allowed was injected. I was kind of "poisoned".

What I'm sure about, is that a nerve was hit. The injection hurt and it's not supposed to be in this kind of treatment.

But what now? Does anyone see logic in these two hypotheses?

All the best

[Kitt]

Welcome Dutchgirl.

Someone will be along to help.

[Dutchgirl]

Originally Posted by Kitt

Welcome Dutchgirl.

Someone will be along to help.

Thanks Kitt for your welcome .

Good to know that there are people out there to communicate with about these issues.

[mrsD]

Welcome to NeuroTalk:

We had a member here who developed a reaction to a pelvic treatment involving an acid injection...

http://neurotalk.psychcentral.com/post892849-7.html

Her posts evolved here to become a diagnosis of Reflex Sympathetic Dystrophy, or CRPS. She went to our RSD forum here and discussed her pain issues and finally got a pain pump.
I have noticed she hasn't posted recently, and I don't know why.

But if you search her in member's list, and read her posts, you might want to explore RSD diagnosis as it may apply to you.

Also "nerve injury" is listed on internet sites for your agent (aethoxysclerol). Peripheral nerves do sometimes grow back after a sclerosis agent is applied. But that takes time.
Ablating a nerve with a chemical is done in a condition called Meraglia Paresthetica, in the upper thigh and that nerve can grow back, (the lateral femoral nerve), sometimes with painful consequences.

But yes, the release of the peptides from the neurons' cell walls has been implacated, in causing a diffuse full body reaction.
But RSD also does this and is called full body RSD, involving the sympathetic nervous system.

[Dutchgirl]

Dear Mrs. D,

Thank you for your reply. But I really hope you're not right.... RSD would be the worst I could imagine. I mentioned RSD once to my neurologist, but he couldn't make sense of it in my case because my initial pain was just a little annoying but not very painful stinging near the tailbone (I could do everything I did before at that time and didn't need medication) and I hadn't any other symptoms like swelling, redness, increased sweating, hot or cold feeling.

I should add to my story that my father has a form of PN too. He can feel less than normal vibration and has high CRP in his blood. He had a prostate operation and after that he developed burning in his arms. Since last year, his symptoms got worse and now he has burning legs at night and tingling and pins and needles all over his body, just like me. This brought me to the conclusion that maybe the two of us had a kind of immune reaction to surgery. I found an article on the internet which stated that this was a possibility when neuropathy developed after surgery in other locations than where the surgery was performed. Of course, there is a hereditary component in all this too.

I really hope so much there is something that can be done about my condition... I'm only 31 and like I said, before the injection I was a healthy person. But I guess that doesn't count much when you would develop RSD. I really hope it's not RSD.

[mrsD]

I hope it is not RSD too, for your sake.

Make sure you check the common deficiencies... B12, Vit D etc.
Sometimes if you are marginal with these, and then have a trauma, then the trauma healing soaks up the nutrients.

Zinc is another thing to test for, as it is important for healing.
Omega-3's too.

[Dutchgirl]

Well, actually, I had a B12 and vit. D deficiency! I had bloodwork done after the trauma and it turned out I was deficient. I got B12 injections and vit. D supplements but unfortunately, that didn't make a difference for me. Maybe my body has just to much work to do.

But Mrs D, what do you mean by this:

"The release of the peptides from the neurons' cell walls has been implacated, in causing a diffuse full body reaction."

[mrsD]

Peptides are proteins, and in a person with the genetic potential to overreact to invading proteins in the blood (gluten is one example)...you can react to your own if they are found floating around like an invader, and not attached to where they belong.

It is one theory for some viral illness triggers for PN.
This is not common, and no one yet has proven the theory but some doctors will cite it to patients when other answers are negative.

B12 injections are typically cyano form, and for those who have the methylation genetic errors is not going to work as they cannot activate to methylcobalamin for the B12 to be in it active form.

Better to take methyB12 orally for a while and see if that improves things. At least 1mg a day on an empty stomach.

[Dutchgirl]

Well, thank you Mrs D, that's a really helpful response! I am an allergic to proteins in wheat in particular and to gluten (not officially coeliakie, but an integral doctor found I was allergic to this). I also have a cow milk protein allergy. I had irritable bowel syndrom for a couple of years and this got better with a wheat, gluten and cow milk free diet (although western medicine doctors couldn't find any of these allergies!).

But now to the PN. I can imagine that the process you describe was en is happening in my body. But is there any way to stop this process? I've read about IVIG. Would that be a possibility? I don't want to get my hopes up to much, but just want to explore the possibilities.

I will take the methylcobalamin.