[PhilfromOz]

After only being told by the Neurologist this week I have Neuropathy (didn't say what type yet) I have my GP appointment next week to find out I suppose. What should I expect. I'm not on any Meds. My symptoms have progressed quickly over the months will they keep progressing and what can I possibly expect. I know everyone is different but just a guide of possibilities. I'm a high school woodwork teacher, will I be able to to keep taking my classes and operating machines, saws ect into the future.
Like everyone else just trying to be prepared for the unknown.
Everyone has been fantastic, I thank you all who have your own battles but find it in your heart to help others.

Phil

[KnowNothingJon]

Hi, Phil.

I kept meaning to say hello in your introductory thread. Time got away from me. Consulting the vitamin and supplement thread above as a stickie is a great resource. If Morton's Epsom Salt Cream is available in Australia it is a worthwhile example.

My diagnosis is diabetic neuropathy, so many things that help me are not applicable to all, though many have glucose issues that at the very least flare symptoms if not cause the issue. It is unknown. If you can curb carbs and sugars it is likely to be good for you, minimum.

So many people have varied reactions to medicine, I'd hesitate to give much advise other than say for me I learned that there are some side effects I don't want to get accustomed to.

Involved story short, there was a cognitive trade off in Lyrica that was stark even from two missed doses that I titrated off. I had gotten used to my pregnant pause. Well, it was more of a bloated break. I likely had a space cadet glow.

It was a decent trade off at the time. Many people have a hard time coming off it. It is all about how it affects you and how much relief is worth what side effect.

I used Salonpas patches for relief at one time, but I either had my symptoms move past their reach or over used them and diminishing returns arrived. I do recommend lidoderm patches. I have some left over from when I had shingles. I carve them up into economical marvels, though bad days I splurge on a patch a leg.

Good luck on relief. Stretching, self massage, walking daily to and from work from the parking are all non drug non supplement changes I made. I am mindful of my hydration.

Jon

[PhilfromOz]

Originally Posted by KnowNothingJon

Hi, Phil.

I kept meaning to say hello in your introductory thread. Time got away from me. Consulting the vitamin and supplement thread above as a stickie is a great resource. If Morton's Epsom Salt Cream is available in Australia it is a worthwhile example.

My diagnosis is diabetic neuropathy, so many things that help me are not applicable to all, though many have glucose issues that at the very least flare symptoms if not cause the issue. It is unknown. If you can curb carbs and sugars it is likely to be good for you, minimum.

So many people have varied reactions to medicine, I'd hesitate to give much advise other than say for me I learned that there are some side effects I don't want to get accustomed to.

Involved story short, there was a cognitive trade off in Lyrica that was stark even from two missed doses that I titrated off. I had gotten used to my pregnant pause. Well, it was more of a bloated break. I likely had a space cadet glow.

It was a decent trade off at the time. Many people have a hard time coming off it. It is all about how it affects you and how much relief is worth what side effect.

I used Salonpas patches for relief at one time, but I either had my symptoms move past their reach or over used them and diminishing returns arrived. I do recommend lidoderm patches. I have some left over from when I had shingles. I carve them up into economical marvels, though bad days I splurge on a patch a leg.

Good luck on relief. Stretching, self massage, walking daily to and from work from the parking are all non drug non supplement changes I made. I am mindful of my hydration.

Jon

Thank you so much, I will take this all on board. Will be good to get next weeks appointment over and see what's next. I also will be happier after I have my PET scan in a few months to rule out other nasties.
thanks again and all the best.
Phil

[bluesfan]

Hi PhilfromOz

Sorry don't have a lot of time right now to discuss in depth but will quickly add a few links I found useful in trying to understand the whole neuropathy thing.

http://www.ninds.nih.gov/disorders/p...neuropathy.htm

http://patient.info/health/periphera...opathy-leaflet

http://www.clevelandclinicmeded.com/...hy/Default.htm

All the best for your GP appt. - I hope you get a definitive diagnosis of type and cause to help figure out a possible prognosis and treatment. By now from reading other posts on this site you'll realize that doesn't always happen - if that's the case you're in good company and we'll be here to listen if you need us.

[glenntaj]

--you should definitely take a look at toxic/chemical causes of neuropathy.

Many of the solvents, glues, and other chemicals involved in working with wood and other materials can have neurotoxic effects if people are exposed to them over long periods of time, even in smallish doses. Definitely something to discuss with the physicians.

[mrsD]

While you are waiting for your PET scan, you could get some testing done for paraneoplasia, and B12, Vit D etc.

That formaldehyde exposure is highly suspect. You can Google it for more information.

Were (are) you exposed to other solvents? Mineral spirits, xylene, benzene? Some are defatting agents and they can damage nerves that way.

[PhilfromOz]

Originally Posted by bluesfan

Hi PhilfromOz

Sorry don't have a lot of time right now to discuss in depth but will quickly add a few links I found useful in trying to understand the whole neuropathy thing.

http://www.ninds.nih.gov/disorders/p...neuropathy.htm

http://patient.info/health/periphera...opathy-leaflet

http://www.clevelandclinicmeded.com/...hy/Default.htm

All the best for your GP appt. - I hope you get a definitive diagnosis of type and cause to help figure out a possible prognosis and treatment. By now from reading other posts on this site you'll realize that doesn't always happen - if that's the case you're in good company and we'll be here to listen if you need us.

Thanks heaps, everyone has been great.

[northerngal]

The PN is so different for every person, it is really impossible to tell how each will progress. Determining the cause is a big factor in receiving proper treatment. Unfortunately the cause cannot always be found.
When my symptoms started, the basics were done first, ruling out diabetes, toxins, my water was tested, MRI to rule out MS, b-12, rhemotoid factors done, thyroidd tests, lyme tests, gluten tests, sjrogens , lupus, vascular tests, emg/ncv testing, paraneoplastic panel, The lists and tests may go on and on until something is found.
The best you can do during this diagnosing phase is write things down, think back and see if there were precursors you missed, get family history to check for hereditary neuropathy. Have you started new medication,( statins, antibiotics ). It's hard to be patient and wait for all the testing and results. The good news is now, being a teacher, you must be off for the summer and can hopefully get all the testing done and over with before fall. Good luck.....I know it's hard, but try not to google too many symptoms. Try to wait for your Dr and test results. In the diagnosing phase I had myself so stressed from doing this and it really didn't change anything, just caused me more stress.
Informing yourself once you have a diagnosis is great and helpful, but trying to diagnose yourself is not.