[MelodyL]

Hi all.

Just got back from Cornell. Lost two and a half lbs. Don't all jump up for joy, because I'm sure not but at least I didn't gain or stay the same. I lose very slowly.

Anyway, I asked my doctor at Cornell (I even printed out the info and showed her), about Ranirestat. It's a potent aldose reductase inhibitor in development at Dainippon Pharma (japan) to treat Diabetic Sensorimotor polyneuropathy. ARI's are thought to act by inhibiting the polyol pathway leading to nerve damage. This is important because in diabetics prolonged hyperglycemia exacerbates ADR activity which in turn leads to increased conversion of glucose to polyols. e.g. sorbitol. Acccumulation of sorbitol and fructose in nerve cells leads to damage.

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And don't think I got smart all of a sudden, I just read what it said on the paper and typed it in this thread. I have absolutely no idea what all this means. But I know many of you learned neuropathy people out there will know what this means.

Anyway, I showed the doctor at Cornell the paper and she said 'Oh, I heard about this drug, it's not approved yet". I then said "well, what have you heard about it, does it work, or not work?" and she said "they have no results yet, none that I've heard of". I asked her to keep me apprised of anything that she hears.

I am so sorry that there isn't more news on this but I do have news on my neuropathy.

She did the vibration test on me. She bangs the tuning fork and she goes "let me know when this stops vibrating'. Didn't do so good on that one. My left foot is worse than my right foot (in the tuning fork test).

BUT. she took out this gadget with a long piece of what looks like rigid dental floss on one end. She said "now close your eyes, this will feel soft but I want you to tell me if you feel it whereever I put it".

So I felt absolutely every spot she put it on.

So she said "well, loss of vibration feeling is the first to go in diabetic neuropathy, but the thing that I touched your feet with, well that is very important. You still have much feeling. And most important, do not go barefoot" Then I told her about my pins and needles and burning (it started 3 months ago). She said "yes, how is that doing?" I said "well, let me tell you a story about Methylcobalimin, and I told her about the whole 5000 under the tongue every morning. She said "that's amazing, and it can't hurt you because it's not stored in the body, so take it and keep doing well".

She didn't pooh pooh it. She's a very very good doctor and she listens. She has many patients who are on B-12 but they are not on the dosing that I am on. And they don't control their blood sugar like I do.

She also said "it also must be that you are controlling your blood sugar better". I countered with "I've been controlling my blood sugar for two years, I still got neuropathy, but ever since I began the methyl b-12, all the pins and needles stopped. I do get the burning but it's nowhere where it was initially. She said "well, that's good".

So I'm still taking my b-12 methyl and we shall see.

Oh, I have a question. I am in a protocol at Cornell. I was randomly put in the standard protocol but my body is reacting like I was put in their intensive protocol.

I lost more weight, my sugar went down, my A1c is good, my blood pressure is perfect. Everytime I go there and they do the blood pressure and sugar reading, they always say "this is great for you, but not that great for our protocol". Now they have explained this to me but I just don't get it.

Why, because I'm doing good, is it NOT GOOD FOR THEIR PROTOCOL??

Anybody know??

P.S. She liked my croc shoes.

[flsun01]

......maybe some good news will be forthcoming . I can certainly relate to your comment to the doc concerning your neuropathy. I started healthy eating , lost 40 pounds in 6 months got my a1c to 6.5 and what did I get? You guessed it, SFSN. Go figure.......now some in the medical community are saying neuropathy ( small fiber) may be a early warning of Diabetes! Oh well, all you can do is keep plugging along like yourself and hope for the best. At least you have some satisfaction in knowing you are doing your best and that helps a lot!

[rfinney]

Mel - The researchers want the intensive protocol group to gain the most benefit, with the standard group showing no change, or perhaps only minimal improvement. They want to show that folks REALLY need that intensive protocol. You just might be showing them that other variables are at work besides the intensity of their beloved protocol.

I am kidding, well sorta. In any event, Mel, don't worry about what they said. They should be using a large enough number of subjects that one person's results won't matter. If not, shame on them (unless it's a pilot, that is, trial study). Actually, it is a violation of standards (not standard protocol!!) that they said that to you. In some folks, the result could be a decrease in performance - altho, I am not worried about you Mel. I know they ain't gonna guilt trip you so easily!!!

flsun01 - There has been a lot of talk about the symptoms of small-fiber neuropathy occurring before the onset of diabetes. I know that it has been a documented clinical phenomenon for some time, and I seem to recall that there are some actual studies on it. I am sure glenn will have the exact info, and you might want to do a search on the board here as well - altho, as always, I suspect that most of the postings were lost when the old board crashed.

rafi

[MelodyL]

rfinney:

They once said that my body is acting like it is in the intensive protocol. This is a study in preventing heart disease in diabetic women.

They initially told me that the goal was to get my blood sugar to 170 after dinner time. That was some kind of goal to reach.

Well, I went to a nutritionist, we cut out absolutly anything that should not go into our bodies. And I changed from 8 oral meds a day to the Lantus and only two metformin a day. Then, afer a while, no more metformin. Only the one shot of Lantus in the morning.

And the blood pressure information they gave me is absolutely fascinating.

And Alan's visiting nurse and I were talking about blood pressure and she completely agreed with everything Cornell said about blood pressure.

See, when you watch tv and see a medical show and the guy goes "oh, you're pressure is 120/80, that's perfect!!!. Well according to Cornell, that's an idicator of pre-hypertension. I am on zestoretic 20/12.5. That's what I am on now.

When I initially started Cornell, I was on Zestoril, 10 mgs. Ever since I'm 26, I've been on a pill ending with prill. Monopril, ...whatever, they all ended with prill. So my pressure was not bad, it was never high at Cornell but they added a water pill to it and then put me on Zestoretic. I used to take Zestoretic 20/25. Then my pressure got low and they reduced it to 20/12.5 and they think it's perfect.

When I go there, they put my arm in this machine gadget and it takes my pressure 3 times. They write absolutely everything down.

I will never forget the first time I saw the numbers reading 102/62 and they were beaming and somone said "wow, look at those numbers". I said "look at those numbers??, I'm gonna die, are you crazy, they are low". And that's when they explained the whole new thinking process about what a person's blood pressure number really indicates. They said "when you have these kinds of numbers, you are much less of an indicator for having a stroke". So I said 'well, indicate away, I don't want any stroke".

But I do have a question about blood pressure numbers. Yesterday, my friend went to her doctor. She's obese, type 2 diabetes and takes a lot of blood pressure medicine. All her life and she's now 63. She was telling me that when the doctor took her pressure, it was 103/68 and he goes, "oh my god, it's so low". Then he took it again and it was 120/80 and he goes, "now you're perfect".

So who is right and who is wrong about this? By the way, the guy who took her pressure is a cardiologist. So do cardiologists think differently about blood pressure than endocrinologists? Very confusing.


They do have many people in the protocol. I see them outside in the waiting room. Many are obese, all are diabetic and all are on some forms of insulin. I sit with them and talk sometimes. I don't preach because what they do is none of my business, but I do listen when they talk about food.

They all love to eat and they go 'Oh, I can't give that up, and I can't give this up". Then they go in and come out with bottles and bottles of insulin and they take 3 or more shots a day (not Lantus) but stuff like humalog.

These people with the type two, well, they just can't change their eating habits. It's just too hard. So they are in the protocol too. I have no way of knowing who is intensive or who is standard. I guess the computer knows.

I just hope this protocol, well, I hope they extend it. It's nice getting all the meds, testing stuff, and blood pressure meds for nothing. It's also nice to get the exams for neuropathy, and she tests my feet. And I've been to the top eye guy at Cornell who tested me for Diabetic Retinopathy (negative).

So the care is exceptional and I was lucky to get in this protocol.

Oh, today, they reduced my Lantus. My a1c is 6.1 so now I'm down to 30 of the Lantus. When I began the ACCORD program, I started with 46 of the Lantus and two metformins a day.

So going from 46 to 30, well, that tells me that if I lose 25 more lbs, maybe I can go down to 10 of the Lantus some day. Wouldn't that be a hoot!!!

Oh, and this is funny. Dr. Fred's office once had a special meeting with the people who make Lantus. They invited all the diabetics (I wasn't even a patient of Dr. Fred's yet), but because Alan was, Dr. Fred said "Melody, come to the office on Wednesday, and you'll meet the Lantus people, they want to do a demonstration). This was last year. I am now Dr. Fred's patient also.


So I go to this meeting with the Lantus people and there are two other people there who have diabetes. What was the meeting about?? It was for the Opti-click Diabetes pen. Let me tell you something. No matter how many times, they can show me how to use this thing, forget it.

It looks like a bigger version of a ball point pen, and you have a cartridge, and you have to prime it, and turn it for the number of units. I just gave up, I thanked the people, and I said "believe me, giving myself an injection is a whole lot easier than learning to use this gadget.

I could give myself an injection in my sleep. I hope to god, I never have to switch and use this opti-click thing. It was so many steps.

Maybe someday, my body will respond even better and maybe I can even go off diabetic medicine altogether???? Now that would be something.

bye for now. And be assured, if there is any news about any PN drug, my doctor will inform me.

Melody

[Alkymst]

is dead on about prediabetes and painful SFPN, also linked to metabolic syndrome too.
There are a number of well documented studies that link particularly painful SFPN to prediabetes and metabolic syndrome. Lifestyle intervention has been shown to delay the onset of PN in prediabetics but also to result in reinervation and pain reduction in those patients who still had demonstrable small fibers.
A couple of good links to studies from Univ of Utah follow. If my memory is correct I believe that Silverlady started a thread much earlier along these lines (related to Sjrogen's syndrome I think) and I believe Wings42 also had some leads but I'll defer to them.
Hope this helps somewhat - I have some other links if you're interested
Alkymst
http://care.diabetesjournals.org/cgi...ract/29/6/1294
http://www.sciencedirect.com/science...d469fd5964375c

[shiney sue]

My visiting nurse just gave me a pain shot and i could't explain that
now. Only can say is if you have a bad infection your insulin or any
infection your insulin must be ajusted. What that has to do with any
thing i forget. But that's interesting Mel,my friend the Cardiologist,
never talks Meds or other thats are deal. Well shoot that's much help but
i hope that was 21/2 lbs. My computer is making a banging nosie
and it's loud. Sue

[glenntaj]

that has come out on "pre-diabetic"/impaired glucose tolerance neuropathy over the past decade or so:

http://www.neurologyreviews.com/may06/neuropathy.html

http://care.diabetesjournals.org/cgi...full/24/8/1448

http://www.jabfm.org/cgi/reprint/17/2/127.pdf

http://care.diabetesjournals.org/cgi...full/29/6/1294

http://www.neurology.org/cgi/content/abstract/60/1/108


I've tried to rebuild my database of info about this (and other aspects of neuropathy) since the BT database problems, and been relatively successful in this area--the studies are not hard to find as this has been an area of burgeoning research.

It's all the more reason for healthy lifestyle changes to forestall neuropathic symptoms before they happen.

[MelodyL]

Sue: Are you asking if I lost 21 plus pounds?

No unfortunately, only 2 and a half pounds this visit. But that's fine. I used to weigh over 300 and that was 100 plus pounds ago. I look completely different.

Hope your pain is going away.

My friend called me up last night all upset. He's my ex-friend's developmentally delayed family member. He's 55 but has the mind of a child. He's diabetic and has neuropathy (only he does not know that he has neuropathy, because he couldn't understand it.). They give him neurontin but he had an infection in his right foot and they had to operate recently because it went down to the bone. So, they cleared up his infection in the hospital, put a special kind of compression boot thing on his right foot, and put him in the rehab of Maimonides Hospital. He was there for more than a month. He was finally sent home (still wearing the boot). His sugar never goes over 100. He calls me every day.

So last night he calls me all upset saying "my foot blew up". I said "your foot with the ulcer?, and he goes "no the left foot". I said "what happened?". He said that the previous night his left foot blew up, got all red and he got scared. He took himself to the doctor yesterday, the doctor took all kinds of x-rays and told him "your foot is fine". I asked him "is your foot burning and he goes "oh, it drives me nuts, it burns all the time". (ding dong, Neuropathy???). I asked him "when you had the boo-boo (that's how you have to talk to him ), I said "when you had the boo-boo on the right foot and it got infected, did you feel anything? and he said "No, my feet are numb". And I knew from last year that he was on neurontin.

He can't read or write and his cousin takes care of his bills. He worked as a box-boy for 25 years and gets a pension and is now on SS Disability. But he has a payee and they don't give him any money. (you know what that means right?)

So I asked him very gently, I said "hon, has the doctor mentioned the word neuropathy to you?" and he said "what's that?, the doctor only talks to my cousin". So the guy has neuropathy, foot ulcers, is developmentally disabled, and is crying and really doesn't know what is going on with his foot.

Three years ago (I saw this coming because I know the family for over 45 years), they asked me to find names of group homes for him in case they ever needed one. He presently lives by himself, and knows how to cook simple things. So three years ago, I compiled a list of all group homes. It seems that you have to have a written diagnosis of being developmentally delayed and you have to have this written down before you hit the age of 22 or they won't place you. I got this from many group homes I called up.

So I contacted the Disability Association, and various other associations. There are places he can go, but his relatives have to apply, fill out the paperwork and follow up. So I did the list, went over there, gave it to the person who was my best friend at the time, she took the list, put it on the table and said "listen, this is my husband's relative, not mine, let him deal with it" What could I say? Then they called me up and said "can you please come over and speak to the Elder plan Representative, because we want to put him on an HMO and you know all about that stuff."?

So of course I went, and there we were, my best friend, and the elderplan rep. The developmentally disabled guy didn't come because he would have never understood what was going on. I asked all the questions, the rep said "oh you know what you're talking about" my friend said "well, she's been on disability for a few years and she knows what hmo's are, and we don't know anything". So I got every thing written down. All questions answered, all t's crossed and i's dotted (if you get my drift).

The Elder plan lady leaves, my best friend turns around and goes "oh thank you, I didn't know anything she was talking about'. Then I said "be sure to give this information to your husband, he has to make a decision about what plan to put this guy on". Guess what happened? I had everything in a folder, all relevant questions answered, and her husband never bothered to pick it up. He didn't even glance at it.

And then later, well let's just say that after 46 years, we are no longer speaking to each other. But the developmentally disabled guy calls me every day and I listen to him, and I encourage him. He is actually like a child.

So now his left foot is burning, (but not the right foot, because it has this boot with a pump like device on it). He puts ice on it.

Jeez, it's bad enough for so called normal people to be afflicted with diabetic neuropathy, but imagine a developmentally delayed 55 year old who cries and doesn't know what is going on. His relatives don't give a crap, and I have absolutely no input in what can be done.

Very frustrating.

Melody