10 years of progressive nerve loss, and then?
 

Hello, I'm new to the group. I'm 65 and first noticed a slight loss of sensation in my toes about 10 years ago from what is apparently small fiber pn. The numbness now encompasses the entire soles of my feet and for the first time I am starting to experience some pain while walking. Does anyone know, will this just keep on getting worse? I've tried most things, but mostly just exercise and supplements.

If you are consuming some drug or food that causes neuropathy, it will progress. If it is hereditary, it will probably progress.
If you are diabetic and not controlling your diet, and are not well controlled it will probably progress. (diabetics react differently because of genetics it has been found, so depending on genetics the diabetic damage progresses in some and not others). Untreated autoimmune issues typically progress.

Tell me what supplements and doses you are using. Tweeking them may help.

Thanks for your replies!

No, there's no neuropathy in my family that I know of and as far as I know I am not diabetic (though I've heard that you can have it despite negative diagnosis). I've have had most of the standard tests including a muscle biopsy and no definitive cause has been suggested, so I guess we'll call it idiopathic.

I've been taking b-12 injections, folic acid, l-carnitine, lipoic acid, co-q10, lots of omegas and anti oxidants, etc. in varying amounts and combinations but over the long run nothing seems to have helped (though of course I couldn't say for sure that it would not have been much worse in the absence of all the above).

Mrs. D, when you say it will progress, what is the ultimate outcome? In other words, I'm wondering, at the rate I'm going, does it become impossible to walk at some point? What exactly should I be expecting?

I am not an expert but I think it varies from person to person. I know my gramps has had neuropathy for many years and now he is almost 88 and is still active. He has a hard time long distances but overall especially for his age doing well. I think part of the importance of finding out the why behind the neuropathy is so it can get to a better point or stop it from getting worse. You said you are getting b12 shots was your's low? Some people on here who had low b12 levels and then got them to a better place have felt benefits.

I would get tested for Vit D levels. This is turning out to be important for PNers and people with chronic pain/illness. Many on these forums find out they are very low when tested.

Also I'd get more aggressive with the B12. Injections often don't seem to work well. I'd do 5mg orally daily for 3 months and see if there is any difference. (take on an empty stomach so it will work best)

10 yrs is a long time...when long time issues are present, I'd look to diet as well. Gluten is the prime cause of long term neuropathy. But other foods may affect you. Nightshade veggies, dairy, soy etc. Doing an elimination diet carefully for one thing at a time, may be very revealing for you.

I take it you have had autoimmune testing to rule out Lupus and other autoimmune diseases?

If you are taking any RX drugs, look at them carefully. Many drugs can be culprits in PN.

Thanks for the encouragement! (No, I don't think my b-12 levels were particularly low, however a neurologist I saw thought I should try it anyway.)

Thanks, I'll check out the diet (I'm taking D already). The only Rx drug I take is thyroid.

Make sure you are taking the right form of D==D3

And a dose sufficient to raise you up to 50-80ng/ml
Some doctors use 60ng as the high and other go higher.
But many doctors report low values as normal...like they do with B12. So it is important to get your B12 numbers too. For the same reason.

yes, thanks. I'm taking 6,000 iu of D3 per day.

Just so you know.... My PN came from untreated hypothyroidism for years... When my feet woke up...I was left with some residual numbness (and sometimes burning pain) in the tips of my toes.

Now that I am older, I have some insulin resistance on top of that.

Both my feet and hands were severely affected back then, and I don't think recovery for me to 100% was possible.

Hypothyroidism is known to affect compressive areas in the wrist and foot, where the ligaments are tight.

So you will want to make sure you are monitored properly with the thyroid testing. I keep my TSHs below 2.

Also you need to take the thyroid on an empty stomach to make sure it is absorbed well.

Mrs D or anyone when you say to watch soy,dairy,or gluten but if one does not have an intolerance I am confused on why that would make the PN worse. I know you and others said night shade increase your pain but I don't get the why behind this. Does it also damage the nerves? I understand it if you are intolerant the damage that can be done or if diabetitic. Same with meds on why one person could take a med and it not cause damage to the nerves and another it does. Could this happen with a med a person took as a child even and then it develop so many years later? If it is too hard to expalin I understand
I am sorry to ask so much on your thread. If I were you I would get a complete bloodwork done again if not recent. You may have to ask your doctor to test for auto immune,b,d etc,bloodsugar. That may give you more concrete direction.

When people have "leaky gut".... things pass into the body that shouldn't. This stimulates the immune system, and part of that involves inflammatory cytokines... including histamine.
It is this cascade of inflammation/histamine that causes the grief.

Also some peptides, being protein in nature can cause antibodies to be formed, and these can then attack parts of the body with protein sequences that are similar. Some reactions are confined to the joints, some skin, and some nerves, etc.

Many patients with autism for example cannot tolerate casein that is the peptide in dairy. So many autism treatments involve gluten free/casein free diets. Casein is thought to involve the central nervous system mostly.

Many are allergic to soy and some even corn. My son's friend from high school went deaf from corn. When that was uncovered in allergy testing, she went corn free and regained about 25% hearing, and now uses hearing aids. In her case the corn gluten, attacked the auditory nerves.

Everyone is different... genetics I guess determine what system will get attacked when allergies and intolerances exist.

Thank you for always taking the time to explain things so well. It is really appreciated and I have learned a lot here.

Thanks, that's interesting. I've been taking thyroid for several years (on an empty stomach) but this is the first I'd heard of any link to pn. Tests show now that my thyroid levels are fine, so I don't think that's it for me.