I am sorry to learn you have that diagnosis now. PN is a constant thing, I'm afraid.

Some people do find some improvement with supplements.
But the PN from these drugs is challenging since it damages cells.

Here is the link to my new thread:
http://neurotalk.psychcentral.com/thread122889.html

Drugs that may cause PN.

The new subforum at PN is for resources and information...and it is growing daily. (I haven't done the statin portion of that thread yet, but it is coming soon).
If someone is taking more than one of the drugs on the list then the risk of PN is greater.

The fluoroquinolone family is post 2 on that thread. I can't imagine "where" your doctor looked on the net and found nothing! Must have just checked with Avelox's website. How lame! This problem is just huge... But then doctors now test for B12 and Vit D levels, but they in the same vein are telling people they are normal, when in fact they are LOW. Same mindset if you ask me!

The denial of quinolone damage is the same as the denial of statin damage. They will say anything to get you out of the office and away from them, to avoid a liability action which may follow. They often deny another doctor's fault as well. (surgeons are good at this one), because they don't want to testify to it.

Hope....thanks for the reply.

I am no longer working. I have applied for disability. I still have COBRA insurance, but my last employer was cutting corners when they got their insurance changed last summer so they do not cover much. My coverage does not cover any sort of testing at all until I meet a large deductable. Without income, I have no way to pay for MRI, EMG, etc. I don't think I am going to be able to pay the co-pay for the Savela so am not sure I will even try it. It is not one of their recommended meds, so is the highest tier in cost.

I had blood testing done in March as part of my regular care, and am still trying to pay for it.

Neuro thought that my levels should not have changed enough from March to middle of April when this started, especially since my levels have been the same over time.

The way the doc explained to me was that it doesn't really matter what the cause is. Treatment would still be the same. He said he would "love" to have an MRI of my neck to rule out a problem there, but it would satisfy his curiosity more than actually help me. He mentioned EMG and biopsy, but thought each one would cause me a lot of pain without helping me. Since my RSD moves with injury, he thought it would not be wise to do anything to make it spread. The RSD is much worse than the neuropathy, so I agree.

If this neuropathy gets worse, then we will re-evaluate. He feels it is related to the Avelox, and if so, it should gradually get better, but said it may take a year. If it is part of the RSD, or just a coincidence then it will probably stay the same or get worse.

What he said made sense to me, given my situation.

Mrs.D
We were posting at the same time.

I don't know where he looked online - he appeared to be looking at several sites, as he kept typing and clicking. I could not see the screen. He seemed to be intrigued by the possibility of the avelox causing my problem. He said that I only took it four days, and he thought these sorts of things happened when someone took a med for longer than that. But did say that the damage done by the RSD could have pre-disposed me to a problem from the avelox.

I am not sure what to do from here. I cannot afford any tests. I cannot afford expensive meds.

When I go back to see him in July, I'll print out your information and show it to him.

My family doc had prescribed a course of steriods for me. I didn't fill the script until I saw the neuro. He said not to fill it.

I understand.

Yes please do print out the information. Educating doctors is
really important.

There is that connection to NSAIDs and steroids too. For people who have lung congestion and pain, giving these with drugs like Avelox may make the neuropathy more likely.

My post gives lots of links. It appears that the damage is to DNA, possibly in mitochondria. (these drugs work by damaging DNA in bacteria). Our mitochondria evolved from bacteria, and resemble them in make up.

NAC (n-acetyl cysteine) is not expensive and does promote synthesis of glutathione in the body. It is one alternative.
So is acetyl carnitine, which is used by the HIV community for drug damaged PN...Acetyl carnitine has papers also showing improvement in Chemo drug damaged nerves as well.

I'd suggest when you have time to read the new posts on the subforum. Diet, supplements, etc as well as some of the links provided to medical websites devoted to PN.
Many doctors do not realize the depth to this topic. So it is up to the patients to find the information themselves, sadly to say.

MrsD...next time I am in town, I will try to get those supplements.

Thanks for all your info. I'll go over to the PN forum and start reading!

MrsD - I meant to ask you about something you said

"PN is a constant thing, I'm afraid. "

During the night, and when I get up in the morning, that is the worst time for me. Then, when ever I use my hands it is worse - such as driving, typing, writing, brushing the dog, wiping a counter, cutting veggies. But, there are times during the day when it is not bad, barely noticeable. Not often, but it does seem to be worse at times, and better at times.

Could you explain "constant thing" ?? does that mean that if I have PN, I would not be having times that are better and worse? That it would be a level, constant pain/tingling/numb ???

I am sorry, I should have been more clear.

What I mean by "constant" is that it never really goes away...once you get those symptoms they seem to be for life!

One can minimize them, control them somewhat, but they are always there to return. Mine are always worse in my feet at night. But I can have hand symptoms during the day. Some days the mouse, or sewing are very difficult. Other days not, but basically the symptoms are with me for life.

Many of us on these boards use online shopping to buy supplements. This is far more affordable than buying in stores.

iherb.com
swanson
vitacost

have the best prices. Sometimes Puritan's Pride has good sales and you can save some $$ that way. But Puritan doesn't have the more unusual items, and that is its major drawback.

I use iherb.com myself. They have quality items at sometimes less than 50% the cost of local stores. And they have very low shipping rates. For example the inositol powder we buy is about $12 for 8oz Jarrow brand at iherb. Locally the identical product is $67 for me (vitamin outlet where I checked once). That is the biggest difference I have found. But it averages 1/2 the cost for most items.
Quality companies are (not including all)
NOW
SourceNaturals
Country Life
Jarrow
Doctor's Best
Solgar (but tends to be more expensive)

iherb gives information on many companies for each item, and
reviews by others who have purchased items. The ones I've mentioned above are the ones I prefer.
Under links at iherb are references that are very good. Commission E (gold standard for herbs)
and The Natural Pharmacy both are excellent informational sources on many items you may need help with.

iherb is a huge place, so expect to spend some time there!

Wow, MrsD -- thanks so much for that info!!! That helps me a lot! I will check them out. I take a couple supplements, so does my Mom, and even my service dog takes human supplements (fish oil caps and probiotics) so this will be very helpful!

I sure do appreciate all the info you have shared on Neurotalk. It is wonderful to have someone take the time to share their knowledge like you do.

Thanks, and Thanks again!