[gailmc]

Hi everyone,
I'm new to this board. I was recently diagnosed with neuropathy in both my feet. I am scared, nervous and in alot of pain and i don't really know what to expect. I also have Meniere's Disease which I was diagnosed with 4 years ago and now I am dealing with this. I'm very frustrated and I guess I'm looking to learn as much as I can about Neuropathy.

[Rrae]

Welcome!
Boy have you come to the right place! You'll be amazed with all of the information there is about neuropathy. Be sure to check out the "Sticky" section at the top and also the "PN supplements, tips, etc."
You certainly aren't alone in this, and the support here is wonderful.

It's great to have you,
Rae

[gailmc]

Originally Posted by Rrae

Welcome!
Boy have you come to the right place! You'll be amazed with all of the information there is about neuropathy. Be sure to check out the "Sticky" section at the top and also the "PN supplements, tips, etc."
You certainly aren't alone in this, and the support here is wonderful.

It's great to have you,
Rae

Thank you Rrae,
I will check out those stickies. I'm glad I'm not alone in this. This is all new to me and It is a little scary and I don't know what to expect so I'm looking forward to getting as much info as I can and meeting everyone here.

[mrsD]

Welcome to NeuroTalk:

Can you please tell us what was going on with you when this started? Did the Meniere's come after, or first?
What tests exactly did you have and what you were taking then (antibiotics, statins, etc) or since then or now?

Our Subforum above has alot of gathered information to help
people decide if they want to try and help themselves. So take a look there as well as the suggested stickies.

[gailmc]

Originally Posted by mrsD

Welcome to NeuroTalk:

Can you please tell us what was going on with you when this started? Did the Meniere's come after, or first?
What tests exactly did you have and what you were taking then (antibiotics, statins, etc) or since then or now?

Our Subforum above has alot of gathered information to help
people decide if they want to try and help themselves. So take a look there as well as the suggested stickies.

Hi,
Actually, the Meniere's came first (about 4 years ago). Woke up one morning and I couldn't hear out of my left ear (It was blocked). Then I started getting vertigo really bad, about 2 to 3 times a week. I had several tests including a balance test, numerous hearing tests and have had steroid injections in my ear to help with vertigo. Then I had a gentamicin shot two years ago and that has really helped alot. It has really minimized my vertigo attacks to the point where I really don't get vertigo any more, I just get little moments of dizziness but nothing severe. I take meclizine and valium for the vertigo.
About 2 years ago I noticed numbness, tingling and burning in both my feet. I thought it was arthritis (I was naive in not knowing it was something else). About a month ago a friend told me about her sister having neuropathy and having the same symptoms. About 3 weeks ago, Ironically enough, I started having alot of pain in my right foot. Up until that point there was no pain, just the tingling and numbness and burning and feeling like I have a boot on even when barefoot. My PCP sent me to a Neurologist and she diagnosed me with the Neuropathy. I have to go back next month to have an EMG and blood work done. That is about it I guess. I know this is long but it's complicated for sure. I will check out the Sticky notes to see what info I can gather. Thanks so much for your inquiry.

[adelina]

Hi Gail,
I just wanted welcome you to this site. When my pn (peripheral Neuropathy) first began and when it was finally diagnosed I was very confused, scared, frustrated and at many times felt depressed and alone. This site really helped me keep it together. No matter what I was going through there was at least one someone that could genuinely empathize with me. It is not always the same person that helps me through a moment of despair - that is what is so wonderful. It is a very enriching experience to learn about people all over the world who can commiserate with you about what you are feeling at that particular moment!

Everyone is also so great about education. You will learn so many new ways to adjust to and combat your pn you will be a bit overwhelmed - but it is worth taking the time to absorb the information and using what applies to you. I have learned things on here that my pcp would not ever have told me and they have greatly improved my daily functioning with pn.

I have learned that there are so many wonderful people here and they are all here to help everyone go through the steps of acclimatizing their lives to pn and to get help when they themselves are having are hard time - it is a wonderful circle!

[Don_S]

I have a similar neuropathy to yours, but milder. Mine was gradual-onset, affects both feet, and manifests as numbness and occasional burning.

It seems that "neuropathy" simply means "nerve disease" and, while medically distinct from specific nerve diseases like multiple sclerosis, the term still covers a lot of very different syndromes. Some, like "Man on Fire" syndrome, have been linked to genetic mutations. Vitamin B12 deficiency is a well-known cause of neuropathy, as is diabetes. Some drugs can cause it too.

I'm just mentioning some things which are explored MUCH more fully on some of the sticky topics. (Mrs. D's excellent work: Vitamin B12, drugs that can cause neuropathy, and diabetic neuropathy) but the take-home message for me is, your neurologist should check B12, alcohol consumption, possibility of diabetes, and family history of neuropathy right off the bat.

One of the benefits of this forum is that when you do see a neurologist you won't be ignorant. My doc is great, he asked all the right questions, and because I learned from this forum what those questions were I have more trust in his knowledge.

Note that the cause of a lot of neuropathy cases is not discovered. I've read anywhere from 30% to 50% are "idiopathic", I dunno what the exact figure is.

Keep us informed.

[mrsD]

So...Gail...what tests have you had to identify PN?

Any?

There are specific tests that reveal various things. Some are
autoimmune, some are vitamin deficiency, some are DNA errors, some are diabetic, etc. What tests have you had, if any?
When you get your tests:
check for TSH (thyroid dysfunction)
Check ANA and other Ig proteins- MGUS
Check for low B12 and low D... B12 should be higher than 400 and make your doctor tell you the numbers. US ranges are typically too low..
Check HbA1C and fasting glucose.

Do you get vaccines? Which vaccines have you had in the last 4 yrs.
Did you get H1N1 during the fake epidemic?

Are you exposed to lots of dry cleaned clothes. Paint strippers, or
gardening pesticides?

[gailmc]

Originally Posted by Blaine

Hi Gail,
I just wanted welcome you to this site. When my pn (peripheral Neuropathy) first began and when it was finally diagnosed I was very confused, scared, frustrated and at many times felt depressed and alone. This site really helped me keep it together. No matter what I was going through there was at least one someone that could genuinely empathize with me. It is not always the same person that helps me through a moment of despair - that is what is so wonderful. It is a very enriching experience to learn about people all over the world who can commiserate with you about what you are feeling at that particular moment!

Everyone is also so great about education. You will learn so many new ways to adjust to and combat your pn you will be a bit overwhelmed - but it is worth taking the time to absorb the information and using what applies to you. I have learned things on here that my pcp would not ever have told me and they have greatly improved my daily functioning with pn.

I have learned that there are so many wonderful people here and they are all here to help everyone go through the steps of acclimatizing their lives to pn and to get help when they themselves are having are hard time - it is a wonderful circle!

Thank you Blaine

[gailmc]

Originally Posted by mrsD

So...Gail...what tests have you had to identify PN?

Any?

There are specific tests that reveal various things. Some are
autoimmune, some are vitamin deficiency, some are DNA errors, some are diabetic, etc. What tests have you had, if any?
When you get your tests:
check for TSH (thyroid dysfunction)
Check ANA and other Ig proteins- MGUS
Check for low B12 and low D... B12 should be higher than 400 and make your doctor tell you the numbers. US ranges are typically too low..
Check HbA1C and fasting glucose.

Do you get vaccines? Which vaccines have you had in the last 4 yrs.
Did you get H1N1 during the fake epidemic?

Are you exposed to lots of dry cleaned clothes. Paint strippers, or
gardening pesticides?

Mrs D,
I have not had any tests as of yet for the PN. I was diagnosed 2 weeks ago. The Neurologist listened to the symptoms, talked to me for quite a while, did some testing of my feet with a couple of different instruments and confirmed what I already suspected, that it was, indeed neuropathy. I will be having an EMG and some blood work that I have to be at the lab for 2 hours. I think this is to test my glucose levels, which, have been high and may have contributed to the neuropathy and also B12 levels. I will be having all of these in January.

I am already on levothyroxin for my thyroid. I have not been exposed to dry cleaned clothes, paint strippers or gardening pesticides and I did not get the H1N1 shot. I think that about covers it.