I don't think you would be wasting your time checking out all other possibilities that can cause neuropathy, not all diabetics get neuropathy, it's just that is a very common cause, that's all.
good luck
Brian :)

M
 

If you have a good Neuro, I do she works with my PM,not all do,just
speak up and talk it through. Your Diabetes,if there's a good Climic at your
hospital get a scrip to go.I think you were let down..WE are all scared
but we are also far stronger then we think we are..Perhaps he was
telling you to get the pain under control,we sure have that.Alot of
PM's willl want your family Dr. your Neuro expain what is wrong
so they know how to treat..Sounds hard,I got into a good PM but
he wamted a lot more information from my neuro first..She did a
bunch of tests,put me in rehab for 14 days..I stayed with my neuro,
for the PN and PM. If you must travel far this may be hard,i'm
sure K will explain what she when through..Hugs to all Sue

Michele:

Since you have been diagnosed with diabetic neuropathy, you know why you have neuropathy!!!

Now you have to concentrate on keeping your blood sugars at a good number. What meds are you on? Are you overweight for your height??

These are important questions.

If your doctor thought that anything else was causing the neuropathy, he probably would have said 'get this type of blood test, or get a spinal tap".

I gather you have not had a spinal tap?? This would rule out or confirm any auto immune stuff going on.

I have diabetes. I also have neuropathy. I was very foolish and never watched my weight, my numbers, etc. etc. I learned a hard lesson.

But I also take Methyl B-12 which really helped with the burning in my feet. I lost the weight and I think of food as fuel for my body, not self-medicating my mind anymore. I had to learn it the hard way.

If you want to rule out anything, then by all means, go and see a neuro, he'll order the necessary tests, and you can rule out major stuff.

But if you know you have diabetic neuropathy, then concentrate on controlling your blood sugar, keeping a good weight, taking your meds, and taking Methyl B-12 (as well as the other nutrients that Mrs. D mentioned.

Also, you can try using a TENS unit. Many people have found benefits from using this pain management gadget.

Best of luck.

I am with Shiney Sue here. It was my Neurologist that did the battery of tests but it was my PM that worked in conjunction with her and myself to sort out other issues since I have spinal disorders. But since they are saying diabetes I think my next step would be with an Endocrinologist (Diabetes). I am just saying that PM's can REALLY help you to sort things out and can help manage the pain. Neurologists can too. But in my experience it has been my PM that was my savior. He did NOT like the "idiopathic" diagnosis of small fiber PN. Especially after EVERYTHING came back negative. So, he really sat down with me and went through everything. Since then my Neurologist has changed that diagnosis to Central Pain Syndrome. Now, that, he is in agreement with based on spinal issues and severe ongoing pain PRIOR to any surgeries. It makes more sense to me as well. I'll just say for now he detests anything that comes back as idiopathic or a wastebasket diagnosis of Fibromyalgia (his words). As he says...pain happens for a REASON. And if diabetes is the issue, then I would definitely find a Specialist for that.

Michele I THINK you've
 

gotten a lot of different viewpoints as to what you should do. Now, It's up to you to figgure out what YOU SHOULD do?
Be aware, that IF there were some easy solution for PN pain we all would not be here. Shucks, we would all be off having fun and making boodles of money or something!
As you go to see new docs, I know how easy it can be to expect: Some AH-HA! moment and all is explained and take this pill and all will be well! It is never ever that way. It usually consists of some long road of diet, medication, exercise, supplements and, to me most important: ONE DURN GOOD ATTITUDE!
The attitude is what essentially won my current neuro over on my own behalf. Willing to try, to learn, to speak up when things are good or not. And to keep up that silly stupid HOPE! I keep telling myself I'm not nearly as bad as I could be? [Would be BAAD IF I'd kept my first neuro!-still shuddering at that thought!] and knowing that as long as I STRIVE for some, any improvements I'm not losing ground! I count little things, such as being able to walk X more steps than the day before w/o serious pay-back, being able to have an attention span that's greater than a gnat due to meds, and any other positives that I can find.
Exercise does help, stimulates the circulation that in turn helps nerves regrow or recover. Gets that circulation going to help your overal vascular system. That all in turn helps you metabolize foods better and avoid many diabetic issues.
We should expect a lot? But, getting anything useful to help in the dealing with this stuff is often the best we GET. I truly wish it were better and more satisfying tho.
I don't think you are wasting time w/the neuro at all! I do agree with others that a good endocrinologist on the 'team' would definitely be a dynamite pair tho....They come to your problem from different 'angles' and will/can work together to work hard on you for you to get you where you best can be? If I were you, I'd ask your GP and neuro for a reference or three...'Interview' some endos and see which one you'd like as well. That way, you'd be 'watched' from all possible problem areas and could avoid really potential nasties down the road.
SHOULD your neuropathy get worse? YOU are gonna have to prove and document that you have been working and working HARD to get your diabetes issues under control before any doc is gonna try to look further for other potential diabetes or other issues. That is plain common sense.
I can only give you some of these: :hug:'s and encouragement for now. As well as a bit of courage - it takes courage to deal with this all. I suspect that you have lots! - j

Appointment
 

We brought all my records since lst August with all the tests. He read them and when he cae back told me I had PN caused by diabetes. He didn't suggest to do any blood work or any other tests. I was trying to tell him how I thought the neuropathy was moving to other parts of my body and he just dismissed it. He just kept harping on seeing a pain management doctor and do not see the neurologist. I just don;t understand why we would stop seeing the neuro. Isn't he the one that knows a lot about neuro diseases? thanks....Michele :hug:

Hon.

Don't know if you know this but diabetic neuropathy does move to different parts of your body. Sometimes it just takes longer. That's why good blood glucose control is EXTREMELY IMPORTANT. So the neuropathy doesn't progress to it's fullest progression.

Your doc probably thinks "well, she's diabetic, her neuopathy is progressing, so all we can do now is pain management".

That might OR MIGHT NOT be the case.

And while you should be finding ways to manager your pain, a visit to an endocrinologist is in order, as well as a visit to a Neurologist that SPECIALIZES in neuropathy.

That way you get as much information as you need.

It's an uphill climb, I know.

I have a friend with a diabetic stomach and another with a diabetic bladder. Sometimes, it hits the eyes.

Diabetes affects the whole body. Some people just thing it affects the feet. This is not the case.

I don't know where you believe your neuropathy has spread to. Do you mind sharing this with us??

Melody

Diabetic neuropathy--
 

--can, on occassion, occur acutely or sub-acutely, and can affect many different parts of the body--the extremities, the trunk, the autonomic systems:

http://neuromuscular.wustl.edu/nothe...etes.htm#acute

Unfortunately, far too many doctors are only familiar with the most common presentation of burning pain in the extremities--the classic "stocking and glove" distribution--and are not knowledgable enough, or inclined, to further investigate symptoms once one is labelled diabetic.

While a good primary care physician is invaluable, unusual presentations generally demand specialists--and SUB-specialists. I not only think you should consult with a neurologist, but one who specializes in neuropathy. Not many do, and those that do are often affiliated with teaching hospitals or large research clinics, and are familiar with the recent research and state of knowledge about the disorder.

In the same vein, if you consult with an endocrinologist, you should try to see one who is familiar with diabetic neuropathy, and not just diabetes.

Admittedly, it's hard to get a handle on how much a neuro or endo knows in a first appointment (unless you've gotten some good patient recommendations). And there are distance and insurance considerations, of course.

Many of us have found that the best knowledge of neuropathy comes from the large tertiary clinical/research centers--Hopkins, Cornell Weill, Massachusetts General, Jack Miller in Chicago, Jacksonville Shands (I'm frankly surprised at the treatment you received there--it is a well-known place for investigations of unusual symptoms, and apparently you didn't get past this "gatekeeper"); doctors here often perform research as well as see patients, and are more familiar with "unusual" presentations/cases.

Certainly, diabetes is a common cause of neuropathy. But when an unusual pattern of symptoms occurs, one should not accept a verdict that that is the ONLY thing going on. Further testing is necessary to rule out other conditons that cause neuropathy (or find them). Many of us are "co-morbid"; certainly diabetes can come with other issues--nutritional problems, gluten sensitivity, thyroid issues, hypertriglyceridemia, autoimmune inflammation--that can cause neuropathy in their own right.

Though it's been mentioned before, a good place to look are the Liza Jane spreadsheets at www.lizajane.org; these are a compendium of almost any test that many of the best minds here could think of tohelp diagnose neuropathy-causing conditions. It's also a great way to track test results over time.

It's certainly possible your neuropathy is attributable in sum to diabetes, but it also behooves you to work with specialists who take your complaints seriously (though it may take time and trial and error to find these people) and who are willing to order more testing. The interaction with that doctor as you report smacks of physician laziness, and probably also pre-judgment (the "if you're type II diabetic from poor eating and exercise habits you deserve what you get" kind).

Glenn
 

is so right if you go to a good hospital and the one you when to is,
but the gatekeeper,could very well of been a 4th year resident. They
are the ones who check on all records,tell you why your there
if his eye got stuck on the Diabetic think,yes,let's get them to
focus on that..That is not easy to put off at that place,so how
does it happen..He may have been tired,no excuse..Did you only
see 1 neuro,well I doubt that,but if it did,I wonder how overbooked they
were still no excuse..

If you read about Billye's trip to Mayo,by car through a Bilzzard from
Dallas Texas.She was put through the ringer as was Fanfair, I will
never forget the tests some new and some repeats not once but
twice for me.. But 2 different reasons. Mayo almost always keeps you
there longer than tell you. I went to Cleveland Cliinic as well But had friends
and a relative in both places and place to stay. That was nice but would
of prefered a place I could vent..

My mother use to put out the kleenex,well you or I cry if it's ok and cry
if it's not. Then I had to go on Dissabilility,Oh did I miss that good insurance,
but I was lucky and got on it with no trouble..I have been lucky to have
2 Neuro's that work with each other,And I will be going to Barnes Jewish
for another problem,I'm still a bit in shock but not afraid,bht when and if
I talk about it.well 2 soon

Talking about diabeties well this people don'y they realize i'm in pain,we
have no doubt your in pain there is PN yes and polyneuropathy's.
And did you have a head-on-collision,was your spine damaged,there
are more reasons and different kinds of pain than we know,my opinion
we read all the stickies be brave,look at the pictures,and after being
a diabetic for a long time make sure your Neuro does not focus on that,
Make sure all Drs. you work with know about PN a very wise man just
said a bit ago ,there are some family Drs. that can handle it,or get you
to a good neuro that specialices in PN..But what tests did they
do,how long were you there,and how many different Drs. did you
see. Thanks don't lose your sence of humor,now that could make
you hit me with a chair,I can't pick one up ,but blasted I still can use
my elbows to fight back. These are smart people but you are ,the
gatekeeper was wrong..We my 12 year old had cancer ! woke up
at 1 and Dr. I though was shaking me and she was loud,that hospital
let the parents stay,but 20 yrs olds who helped us all,rang the bell
and the nurse came down a threw the med. student out,me I was wondering
where I was..My son slep through it so stupid that nitwit he got in so
much trouble,as he should,ahhh boy My son was awake and that 20 yr
old and my son whipered jokes the rest of the night so I could sleep.
Hope you are. Hugs Sue ps You can vent

Yes I do
 

Melody, yes I know why I have pn and it's because of my diabetes. I have a neuro and really like him. This is my 2nd neuro, the first one was a dud.
My blood sugars are under control and of course I could afford to drop about 50lbs.
I take humalog and lantus for my sugars and cymbalta and lyrica for the pain. However it doesn't take my burning pain away sometimes.
I believe I am still in the grieving process because of the pain and the diagnosis.
Anyways thank you for being their for me and others. It helps to know their are words of wisdom from you and other people out there.

thanks,
Micele