New member hello!
 

Hello everyone and thank you!
I just wanted to say how happy I am to find this community and am overwhelmed with the information I have learned from everyone's experiences.
I am not one for chat rooms (which I know this isn't) and when researching specific info on my PN came across this link. Once I started reading thru the threads I was impressed with the caring and support and said to myself that this is a place I would like to be apart of. I have always gone it alone with everything that I've been thru and still going thru and it seems now that I have been missing out on a good thing!

Thanks again to everyone and in the future maybe I can share some of my experiences with you! Below are some of my accomplishments.

Jonathan

Testicular Cancer survivor x 2
Cervical Spondylosis - disks replaced with titanium, fusion of C5-6
Onset of type ll diabetes, now insulin dependent
Severe PN of feet due to chemo and diabetes (double whammy)

"Any transition serious enough to alter your definition of self will require not just small adjustments in your way of living and thinking but a full-on metamorphosis".

Martha Beck

Welcome Jonathan
 

You certainly have found a place that is superior in caring and sharing. We all have different experiences, but by sharing them, we help each other in many, many ways. Glad to have you aboard!
:welcome_sign:

Indeed a warm and hearty welcome from me too!!!

You get lots of hugs, fuzzies and I even supply a laugh or two (or three) around here.

So hop aboard and read and learn and join in.

Regards.

Melody

Welcome Johathan, glad to have you onboard :)

Welcome to the forum, we all learn from each other!!!

Hi Jonathan--
 

--and yes, you're definitely in a lousy situation, between diabetes and chemo, both well known neuropathy causes.

The ray of hope you may have is that in both cases, time, exercise, weight loss, circulation improvement, good supplementation, etc., can help considerably. Diabetic neuropathy can improve if the ischemic damage is stopped through good blood sugar control, and chemo-induced neuropathy often improves once chemo is finished. Problem is, nerve improvement takes a long time--a VERY long time--MUCH longer than it takes to damage them. But, if one is experiencing improvement, it may continue for years--not dramatically, but in tiny increments that may only be noticed in a long term prespective, and with a lot of daily ups and downs. (A number of people keep symptoms diaries, and report that they only notice the improvement when looking over months worth of entries or longer.)

Can you tell us what type of neuropathy symptoms meds (anti-convulsants, anti-depresssants, opiods or analogues) and/or supplements you're on, and more about the timeline of your symptoms and conditions? Many will make suggestions, I'm sure.

hi jonathon and welcome to NeuroTalk.

i'm glad you found us. :)

Hi Jonathan and Welcome to NeuroTalk!

My husband is a testicular cancer survivor (both sides), and he also has PN as a result of the chemo...

Also, he is considered "pre-diabetic" at this point. He does not use insulin (yet) but he does have to watch his diet.

I'm glad you found us here at Neurotalk! If you ever want to chat with another TC survivor just let me know and I'll give you my husband's email address.

Take care,
Liz

Add me to it
 

Hi Jonathan,
Glad you found us and yes...this is a wonderful caring group of people. Not only that, the combination medical and research knowledge is superior. Please post as Glenntaj says and let us know what type of neuropathy symptoms meds (anti-convulsants, anti-depresssants, opiods or analogues) and/or supplements you're on, and more about the timeline of your symptoms and conditions?

We may have suggestions or can point you to some research or help. You in turn may help some of us.

Glad to have you!
Billye

Jonathan - welcome....And ....
 

I'm glad you found us! I know of many who have PN from chemo...I managed to 'escape' the chemo w/my own cancer, BUT I'd the PN/CIDP prior to finding the cancer. I truly believe that I'd become more consistent in seeing the different 'regular' docs for annual check-ups because of the PN, and, that keeping a regular schedule was what got an early diagnosis for me! I have an idea of what you've been thru and hope you can share your learnings with us...Not a vacation for sure.

Each of us tries to bring what we have learned to this place...and feel free to ask any question at all! There are no silly questions....I for one have asked more than a few!

What meds are you on? How are docs treating you for the neuropathy? I cannot underscore the importance of sharing what is working or NOT...most often for some there are more NOTs that yes'es. Do you see a neuro? Really, we're not trying to be nosy per-se, just getting a handle of your situation, your meds, their s/e's etc and what we've learned and can share our experiences about them with you - if there are some parrallels.

Please don't be shy! I for one believe there are lots of folks who've had chemo out there who could join and learn as well. - super good thoughts for now - j

Many thanks
 

Now, I really know I’m in the right place! :Head-Spin:
Give me few to get the info on my time lines and med info. It would do me good to have the documentation anyway because I am finally seeing an internist who specializes in diabetes and nutrition and I’m sure he is familiar with the PN that accompanies it. I’m very new to the game and if anyone has any suggestions on how to handle it I would appreciate it.

Thanks in advance! :Thanx:

I had prediabetes 3 years ago and had burning feet and up to my knees, a change of diet, no sugery carbs, eat low GI , high fibre food, drank plenty of water, some exercise and Vitamin B & B12 has reversed my PN to a 98 % recovery.
I believe it can be done with frank Diabetes too.
There is a lot of good PN related reading in " the stickies ", thats on the front page up the top, well worth reading.

What meds are you taking for your Type 2 diabetes.

I have had Type 2 for almost 20 years. I was first put on diabeta, then some other pill thing, then glucophage, then glucvance, then avandia.
My sugar (of course I was obese at the time and that didn't help) never went below 265.

I actually (and this was about 13 years ago) had a doctor tell me "Well, maybe your sugar is not supposed to go under 265, maybe that's what your body is supposed to read". Since I was really clueless at the time, I figured, "hey, she's a doctor, she went to medical school, if she says my sugar reading might be okay at 265, well who am I to question her".

Thank God, I eventually found my former primary care doc (Dr. V. Goldbetter) who took one look at me and said "Listen to me, you are on dangerous territory here" He upped my Glucophage and gave it to me straight about my diet. Did I listen? well, yes and know.

BUT!!!! I finally did a lot better and my sugar was slowly reaching the 180 (I actually thought I was doing great at that number). One cold day, I went out to shovel snow, I felt great, came back in the house, took my sugar and it read 400. Now I don't have to tell you how that nearly gave me a heart attack. I immediately ran to my doctor who said to me "Melody, exactly what did you eat?" I said "who the hell ate anything?" I shoveled snow". He looked like a lightbulb went off in his head and he said "OH, that's it, You shoveled snow,". (PLease don't ask why shoveling snow makes your sugar go up, they've explained it me many times, I still don't get it because I exercise every day and that doesn't make my sugar go up who why should shoveling snow do it??"

Anyway, here's the moment that changed my diabetes life for good. My doctor told me "I'm getting you off all of this oral crap and putting you on Lantus". Of course I never heard of Lantus. I said "what's that" and he takes out a vial and a syringe and I thought my chest would come out of my body. I said "You want me to take injections, are you crazy?" He said This is different, this is a once a day basal insulin." He taught me how to give myself an injection and in about a week I could do it in my sleep.

So I went from 8 oral pills a day to one injection in the morning of the Lantus.
And the best news is that I started in the ACCORD program At Cornell Weill Medical Center in NYC and I get all meds and all testing strips and all everything for free.

I developed PN about a year ago (but I only have the numbness). In the tops of my toes. I would never even know I had it if my doctor didn't do the tuning fork thing and touch my toes and asked me "tell me when it stops vibratin? " and I responded "when is it going to start?"

I've lost tons of weight. They have had to lower my insulin because over the last 2 years my A1c has gone from 9.5 to 6. ANd that's a good thing.

Two days ago, they called me and said "Melody, we want you to go down from 34 of the Lantus to 30. I was amazed. I might beat this thing yet.

So my question to you is "exactly what kind of insulin are you on?" Are you on the novalog, humalog, (the ones you take before you eat?) or are you on the same kind I'm on, (The Lantus).

And how many units?

Take care,
Melody

Hi there
 

Welcome to this forum... You are going to love the people and the support you will get here...

Cathie :)