Peripheral Neuropathy

[Steve12345]

Hi I am 55 diagnosed T2 5 years

My Question?

How is it possible for a person to get to stage 3 irreversible peripheral neuropathy when the first stage symptoms can be reversed? I am type 2 diabetic the first symptoms were burning sensation on my fingertips and prickling sensation on my hands the top of my fingers were getting numb, the doctor told me that it was PN and irreversible, also it's going to get worse!
Well let me tell you this... for six weeks or so the tingling burning prickling and numbness have been very annoying and very distracting, but I did some very in-depth reading about peripheral neuropathy and discovered by luck... that there are three stages. I am fortunately at the first stage; the doctor has referred me to a neurologist. For the past three weeks I have kept my BG below 7mmols/126 mg/dl (7) being the (worst case) & 4.6 mmols/ 82mg/dl (best case) I must admit we are talking seriously removing carbs from my diet. the neuropathy is beginning to disappear my right hand has cleared up, I have the middle finger of my left hand to settle down then it will have completely healed. I think approx. 3 weeks it will have completely gone.
The question is are doctors giving patients with stage 1 neuropathy treatment that masks the pain therefore allowing patients to keep eating high levels of carbs and getting to stage 2 & finally stage 3, because they don't feel any pain, believing there is no cure and just listening to the doctor’s advice.
Taking prescribed medicine that is going to mask the pain and ultimately allow a patient to end up with irreversible damage when it's not necessary is ridiculous... there must be people out there that could have prevented 2nd and 3rd stage by removing carbs from their diet, it boils my blood to think that I could have ended up with a serious disease due to misinformation from a GP.
what's your thoughts? i might be missing something
Many thanks,
Kind regards,
Steve.

 

[MaryJ]

Hi Steve

It sounds to me exactly as you are saying.

In a way it is the same as not advising newly diagnosed T2's or T1's for that matter to low carb.

Just keep eating this lowly low fat, plenty of carb meal and you'll be fine, diabetes is progressive but don't worry when you can't control your BG;s we've got lots of drugs we can give you for that.

I cannot for the life of me understand how long this can continue to go on. I keep reading of little chinks of light where HCP;s are advocating low carb but it's not enough for the poor sods who believe the doctors really do know best.

Makes me so sad

Mary x

Mary x

 

[MaryJ]

In fact Steve, your post has riled me so much I've just written to my MP lol

To what end I don't know

Mary x

 

[Unbeliever]

I often think it would be much better if they gave no dietary advice at all. I think there was a movement owards this a while ago.

At one time they used to advise just a "normal healthy diet". Which of course means nothing. Then also the dietary advice for diabetes is one thing but it tends to get confused with weight loss dietary advice and they are not necessarily the same hing.

Now we end up with advice that does no seem appropriate for either.
Surely it would be beter not to endorse any particular diet bu to advise moderation in everything and to mention the various means by which diabetics successfully conrol the condition and where further details can be obtained.

Those who require more detailed personalised advice should be referred o a dietician . Having asaid that we obviously need many more , dieiticians [not less as is the trend} These need to be free to reat patients as indivduals and not to be constrained by
"the party line" To tell dieticians what they must say o thier clients is like just allowing an optitian to prescribe one lens for all his customers .

This approach would be more beneficial in the long term and also save a great deal of money .

 

[hallii]

It is a fact that not all doctors are equal, there are good doctors and not so good ones.

There are doctors who have taken a special interest in diabetes (my doc. being one of them) and others to whome it is just a self inflicted nuisance.

As patients we are a lot better informed than we used to be, we can research our condition and make judgements regarding the treatment WE want to have. Most doctors respect this.

We can vote with our feet, it is relatively easy to change NHS doctor and we can always reqest a second opinion. I have done this recently at my multi doctor surgery and my request was quite happily complied with.

What you have written is spot on Steve, and you have taken the action and done the research yourself into your problem and come up with some answers.

My point is that what you have done is pretty much what we must all be prepared to do, we have to be pro-active in the day to day management of our condition and be prepared to challenge the HCPs if we think they are wrong or that treatment they offer is not, in your opinion , the best for you.

GPs are well educated and very knowledgable about a very wide range of medical things, they are not specialists and being human, they sometimes make mistakes. They are, however, the best first line medical advisers we have and we should respect their professionalism and listen carefully to what they say. It does not follow that we should blindly follow all and any treatment without question, far from it, we should be questioning, researching and offering an opinion as to what we, the patient, wants.

At an A&E dept locally I was in attendance with late night problem, the young doctor answered my one question with "I don't know the answer to that, my expertise lies in A&E so I will have to Google it". Just like you and me then!

H

 

[spendercat]

We in the UK have a tendency to blindly trust the NHS. My best advice to any newly diagnosed diabetic is Do Your Own Research. You are your own expert on your body.
I have early peripheral neuropathy, and I am symptom free at the moment with a low carb, high fat diet. I also take benfotiamine and alpha lipoic acid capsules. They work brilliantly for me, and I take no other vitamins, as I tend to think they are best obtained through diet, (and a bit of sunshine for vitamin D)

 

[Steve12345]

Re: Peripheral Neuropathy update!

Hello there!
Well here's some food for thought...

Had my appointment with a neurologist today, asked him a few pointed questions?

Firstly could you answer me these questions in laymans terms?

A. I will do my best

Q. Are there three stages of peripheral neuropathy?
A. Yes

Q. Does the pain vary from stage one to stage two... what I mean by that is... will the pain be more intense at stage two than that of stage one
A. Yes there will be further nerve damage...

Q. Will the pain be more severe at irreversible stage three?
A. Considerably

Q. Is it possible to wake up one morning with Stage 3 irreversible peripheral neuropathy?
A. No there are three stages.

Q. So why are people allowed to get to stage two or stage three when they can be cured at stage one?
A. Patients have different pain threshold's and need to be treated for the pain

Q. Are patients given treatment for pain and therefore allowed to continue eating high carb meals believing they are ok the pain has gone and not being told and I mean seriously told... that if they do not reduce their carb intake they will progress to stage two and then to irreversible stage three...
A. Wll it's not quite as simple as that...

He then asked me to close my eyes and hold out my hands, while he proceeded to touch my finger tips with the top of his pen!!! He asked me if I could feel the pen top touching me... I could have punched him in the mouth... I've got PN and his scientific test was the top of a pen!!!

As far as I am concerned since the day I realised that there was a burning sensation & minor numbness in my fingertips and burning in my palm. I read in-depth, about peripheral neuropathy and realised that this PN can be cured (in my case) if the carbs are reduced. Reckon six months from now it will be gone!
Fasting glucose 4.9 - two hours after a meal 6.6 sometimes 5.3 mmol's but between those figures, my intention is to rid myself of this potentially hideous disease.
The neurologist believed that it was not necessary for me to be referred at this stage as even though I do have PN the blood sugar readings that I furnished him with were excellent!

Q. Can this disease be cured if diagnosed at stage one!
A. Yes

Q. Then how can a person progress to stage three?
A. Depends on an individuals pain threshold and how well they control their blood sugar, in your case you have very good control
some patients struggle controlling their blood glucose...

I don't think they would struggle half as much, if it would have been made crystal clear at the outset that the pain they are eventually going to suffer or even are suffering can or could have been cured at stage one!

Well that about sums it up!

In other words if you are at stage one... with symptoms such as burning, prickling and your fingers starting to go a little bit numb on the tips... make no mistake if you have T2 the chances are it's PN creeping up on you, which is annoying, distracting and a nuisance but the only way you know whether it is improving is by the pain lessening over a period of time. It will certainly make sure you have good control or at least try your best to have good control over your BG, Incidentally, glucose test monitors are only issued to T1 diabetics... T2 have to buy their own meter and the test strips.
I think the only way to stop any progression of this disease is by knowing and monitoring BG levels, but they're not cheap, having said that, the benefits far outweigh the costs... if you can afford them! Don't potentially allow yourself sleepless nights & misery if you don't need to.

Take control (Steve)

 

[IanD]

Well done, Steve, to get a positive answer to a very serious problem. It took me 8 years.

12 years ago I went to Dr with a numbness in my rt thigh. I also had a feeling that my leg was letting me down, though it never did. I kept a walking stick in the car. Dr suspected neuropathy caused by T2, & I was duly diagnosed HbA1c=8.6.

I was given the usual high carb/low sugar/low fat/low salt diet. The neuropathy never went away. A persistent problem was when I was lying on my back in bed, & my wife snuggled up & her knees pressed into that thigh. The neuropathy intensified & became crippling with muscle pains that made in painful to get out of bed. I had to move my legs with my hands. Dr suggested referring me to hospital.

Then I found this forum & low carb. Within 3 months I was cured. 4 years on I am well & free from neuropathy.

At the Hounslow Cardio/Diabetes support group 2 young, healthy & non-diabetic dietitians gave mostly the usual advice, though one did approve of reduced carb, recommending 50 g carb at each meal. BUT that's 600 kcals - where do we get the other 1200 kcals from if we also eat low fat? - Vegetables & fruit - HOWEVER 1 Kg of carrots would provide 200 cals, & a further 40 g of carbohydrate. 5 apples would provide 400 cals, & a further 100 g of carbohydrate – double the 150 g carb.

I'm waiting for the dietitians to reply .... I fear that the dietitians are not diabetics & only know what they are taught by DUK, which of course is that diabetes is progressive. Happily I have been given the opportunity to address the group on my low carb experience.

Search Hounslow on the forum for reports on these meetings.

 

[MaryJ]

Hi Steve

Well done at not punching the guy, not recommended.

I had a reply from my MP today. He's what he says:

Thank you for your email, and I apologise for the delay in responding. I have looked at the link and am clearly concerned that potentially outdated advice may be being given out. I will take up your concerns with Diabetes UK and the Department for Health about this matter and be in touch with you when I receive their replies.

The link he refers to is this thread. I please hope something will change and soon.

Mary x

 

[mish1953]

Steve , you mentioned that the Neurologist used a pen to test your fingertips , are you sure that it was a pen ... these things look like a pen but aren't. .. "A Semmes Weinstein monofilament testing device is a common tool used today. This tool looks like a ball point pen and contains a 5mil monofilament wire. The monofilament wire is touched to the skin to determine the amount of sensory loss. Individuals with peripheral neuropathy will loose the ability to sense the touch of the monofilament wire."
I have experienced the "pen" several times .

Around 60% to 70% of T2 diabetics have some degree of peripheral neuoropathy , most don't notice it . I have PN and have had it for some time, mine will not be going away as its only partly due to diabetes , and I can ( and have ) walked around with glass in my foot not noticed until there was blood all over the floor . I have lost my knee and elbow ( funny bone ) reflexes , I sometime lose control of my leg muscles for a while which makes walking entertaining . Cant lift a kettle sometimes , it can mess with all parts of your body.
There is a considerable medical evidence that points at sorbitol ( a type of sugar ) as a factor in neuropathy, have a look at ... http://www.diabetes-articles.co.ukwww.diabetes-articles.co.uk/peripheral_neuropathy.php for more information about PN .
Sorbitol is all over the place , apples, pears, peaches, and prunes, its used in diet foods, sweeteners, diet drinks and low cal items . see wikipedia .. http://en.wikipedia.org/wiki/Sorbitol.
Just when you thought it was 'safe' to drink diet pop .. diet coke doesnt have sorbitol .. it has aspartame which is also linked to neuropathy .. water seems to be safe :shock:

Steve glad to hear that you have your PN under control .

Cheers
Hamish - Ipswich