[Sheltiemom18]

Getting ready to take this SFSN thing by the horns on Tuesday when seeing the neuros.

Not wanting to sound defeatist but only trying to be realistic, according to the LizaJane chart on PN testing, there is still some bloodwork that was never done in trying to discover a cause for my non-length dependent SFSN. In all honesty, I want the rest of it to be ordered. That way, if all of those are negative just as ever other bit of lab work has been except for thyroid, I'll at least feel, when the word "idiopathic" is eventually tossed out, that I'll be able to better deal with it emotionally.

So my question is - what would you do in this position? Am too old for some types of treatment, and as I've said probably umpteen times before, just cannot do the Big Pharma oral meds that are so often Rx'd. I do supplements as recommended in the sticky and research I've done about them.

But if a cause WAS found for which relatively mild treatment would help, that would be a totally different ballgame.

Best wishes to all, and very sorry for your pain.

Sheltiemom

[smae]

I sure wish that I had some answers for you.. I hate asking a question and then getting a reply that isn't helpful.. but unfortunately, I think you have much more knowledge than I do, so I am not much help.

I am curious though... I was going to send you a private message, but figured I am not the only one who will read this and wonder...

What do you mean by you are too old for some treatments? I often hear that surgery for certain things is not an option for younger people, because it can limit mobility (things such as a spinal fusion). But, I have never once heard that someone was too old for treatment.

However, I also am from South Dakota and the only treatment theyg ive for PN is medicines... all these other things that I read about on this forum are not an option around here.

I would definitely pursue the extra blood work if it will give you some peace of mind... and if it would possibly find a cause.

Good luck!

[mrsD]

I tend to avoid doctors unless there is a non-toxic useful service they can provide for me. I tend to avoid toxic drugs, habit forming drugs, and invasive procedures unless they are life saving at the time. Over the years I've found many ways to handle my "problems"... the most expensive turns out to be the Lidoderm patches, the least expensive, the magnets.

One thing you can try, is an elimination diet. Excluding the most common triggers, one at a time.
If you find one for yourself, you yourself will have to do the dietary changes-- no doctor needed for this one!

I'd start with gluten, since it is the most statistically common factor in neuropathies.

Then the nightshade family (tomatoes, potatoes, eggplant and peppers).

Then the lily family (garlic, onions). but I think this one is less common.

Avoid MSG at all costs (it can cause burning).

Others that can cause food intolerances... dairy, corn, soy, chocolate.
A friend of my son's in high school went deaf from corn! Her parents did some allergy testing for her when she was in grade school, and the corn link was discovered. She did regain some hearing by eliminating it from her diet...and she was able to hear a bit with hearing aids finally. She made great progress in fact, and it is a severe lesson, that people can have some allergy that inflames their nerves, or in her case almost killed her auditory nerves!

I guess in your age group, looking for paraneoplastic causes of PN is worth a doctor's visit. Tumors that are hidden in the lung or ovary and some other tissues, may cause neuropathy. Also the MGUS tests should get measured, as they may rise as we age and signal some bone marrow problems and ultimately myeloma.

How much you want to do the standard testing, is up to you.
In your age group you may find pain management more easily offered to you. Younger patients, often are not given narcotics as easily. If you decide to do opiates, start as low as you can.
Constipation issues are harder on older patients, and can be very uncomfortable in themselves.

Neuropathy can be self-limiting, and wane on its own. It can be a freak thing because of some trigger (which may be gone). Use of some supplements may hasten this recovery.

[Sheltiemom18]

MrsD,

Thanks very much for your detailed reply.

Yup, had the paraneoplastic planel done within a couple of weeks after this thing began, it was sent to Mayo and thankfully negative. It was part of the large bunch of bloodwork, autonomic, skin biopsy and spinal tap testing that was done very early on.

Eliminating all of the gluten-sensitivity things would mean giving up my usual diet almost totally. But if that's what it would take - then I'll try to do that.

I have eaten yogurt every day at lunchtime for the past 25 years, so assume that's out as well.

Just curious - I also itch with this thing for the past few months. Might it be the very dry skin, or something else. Use Dove soap for sensitive skin and free and clear laundry detergent, sparingly.

Sheltiemom

[mrsD]

When you do the elimination thing, you only get rid of one family of agents at a time.

Gluten free is not that hard, you end up with fresh eating every day. I did it for 3 yrs...but I did miss bread and pizza! It turned out for me that gluten wasn't really the culprit.

So you don't have to get rid of dairy, right away. But I would keep a food diary to see if things cluster. MSG can sneak up on you that way and you can then see it when you write it down.

If all your autoimmune panels were normal, I'd think this is allergic. Viral and allergic seem to be the most common in all over skin burning. Your previous reaction to Niacin therapy is also a big clue.

Do antihistamines help? That would be a clue to allergy.

All over itching can be from liver/gall bladder issues too. It is a sign of gall bladder malfunction.

[Sheltiemom18]

Will try the process of elimination you suggest with foods - thanks for the tip on how to do this. Think there's a market in town that carries gluten-free baked goods, so starting on Thursday (food shopping day) will begin by eliminating all wheat/wheat flour/MSG (if any).

P.S. Gallbladder removed 8/2005; all liver tests normal.

[mrsD]

There is a new product in Kroger's of all places:

Gluten Free Bisquick.... now there are waffles/pancakes biscuits for you! ( I used to use low fat Bisquick all the time, but I just found the Gluten free one, and bought it to try...haven't done it yet tho)

Also I still use the Tinkyada brand pasta. This is brown rice and has a nice lower glycemic index. I like the Penna in soups/stews.
I don't think the other gluten free pastas are very palatable IMO.

I used to use rice crackers, and rice cakes for peanut butter.
Labels are clearer, these days too. New labeling laws, etc.

Things are getting very nice now with gluten free.
Some things are available now in regular markets!