Neuropathy

[Delphinum]

Hello,

I've been to see the doctor this morning and it turns out I can't feel the vibrations from the tuning fork thing in my right foot. I have low pulses in the back of both my feet, but fine on the top. She's referring me up to Podiatry at the hospital and also the diabetic clinic there.

I was just wondering if anyone has experienced this and can give me a 'what to expect' run down? I am pretty realistic with my diabetes so keep my sugars pretty much in control but I've had this for 18 years now and this is my first problem.

Thanks for any help you can give.

 

[alaska]

Hi Delphinum

I see your HbA1c is good for a type 1.

After 18 years of type 1, it's not uncommon for neuropathy to be diagnosed. I haven't personally had a diagnosis of neuropathy (not yet at least) so I'm not sure what the process will be. I hope somebody else may be able to give a detailed account of what to expect.

Ed

 

[Delphinum]

Thanks, Ed. On one hand, it's good if no-one replies because that'd mean no-one's got neuropathy! But on the other, it'd be great for me to know more about the condition. I'm too scared to Google in case I get pictures of gangrene and all the other horrific things people like to put pictures of online! :lol:

 

[alaska]

This is the most helpful link I can find for the moment
http://www.nhs.uk/Conditions/Peripheral-neuropathy/Pages/Diagnosis.aspx

and the tab next door to it
http://www.nhs.uk/Conditions/Peripheral-neuropathy/Pages/Treatment.aspx

any help or had you seen that anyway ?

 

[sisterdainty]

my sister has this, but i would consider her to be very unwell, now, she is on kidney dialeses 3 times a week 6hours a day,she has to have blood tranfutions , she has had diabestes for 18 years + - but her problem now is an ulcer that wont mend, and she has a charcoal ? sorry my spelling is not too good, one of her feet has now colloapsed, and she has now been told there is no alternative but to amputate, i am sorry this does not sound good to here, but i cant seem to find anyone on here as bad as my dear sister, i love her so much and would really like someones advice so i can pass it on to her, she does not use a pc, is there anyone who is going or gone through this same thing due to diabestes on here ? please please reply i feel it would help so much thanks :roll:

 

[sdgray22]

Having problems posting, trying again. If sugar levels are under control why would this happen?
Sharon

 

[Delphinum]

Thanks for the links, alaska. I hadn't seen those and will have a look in a sec.

I'm sorry to hear about your sister, sisterdainty. Her situation is what I dread the most, can't imagine what you and your family are going through seeing it. I hope there is someone who can give you some advice or even just their story about it.

I don't know, Sharon. I wasn't well looked after by my clinic as a teenager and I can only attribute it to not having good blood glucose back then as I was on Human Mixtard 30/70 for about 10 years with basically the same number of units daily and ate the same thing. Even if I ate extra or less, the insulin stayed the same - ended up in 3 comas as a result of the insulin and alcohol because I didn't understand how it worked. Since I've been on DAFNE - since about 2004 - , my HbA1cs have been pretty much perfect.

 

[m_brown]

sisterdainty, I am very sad to hear about your sister and I hope someone on here can give you some advice!
Did your sister have poor control of her diabetes which has led to having these complications?

 

[sisterdainty]

thank you everyone for your comments, yes her diabestes was undianosed for a very long time and this has caused her kidney failure and now all other problems have progressed from there,diabestes has caused the kidney failure and all of her foot problems have been caused by this nasty diabestes, i know everyone has different levels of this, and most live a long and happy life, but now with all of her problems i am worried if she will cope, she is only 45, they can now put her to sleep due to so many complecations, she has been on dialises for nearly 4 years this july she has had a line in her neck this whole time, she cannot never have a transplant as she is too high risk - so this is her life and i feel its just getting worse and worse,if i could find someone who is going through the same sort thing that could start to write to each other and give her an extra boost ,xx

 

[Delphinum]

It might be worth posting your own thread, sisterdainty. It might help more people find out about your sister.

 

[Pneu]

Having problems posting, trying again. If sugar levels are under control why would this happen?
Sharon

Pretty much as soon as your HbA1c is above 5.5% then you risk increased chance of complication.. These increased risks are minimal between 5.5 - 6.5% but then grow rather rapidly above 6.5%.

Pretty much whenever your blood glucose rises above 7.8mmol/l then you are doing damage to your body.. the odd spike above this level is not going to do much harm but over a period of a number of years the damage can slowly build up. Keep in mind if you have an HbA1c of above 6.1% then your average blood glucose is 7.8 mmol/l or higher. The body can repair some damage but consistent abuse will cause complications.

 

[Stevie2tone]

I was informed today I may have it, Nurse wanted me to try Amatryptaline (apperently anti-depressants can help with this).
Am new here so still finding my way round so apologies for sticking my nose into this thread. Clicked on it after the talk I had today about Neuropathy.

 

[))Denise((]

Amytriptyline can increase your blood sugar levels and make you gain weight (I was on it for IBS). There are other things that you can take for neuropathy.

 

[Stevie2tone]

I turned it down anyway, Glicazide has recently been increased and also on Sitagliptin. Want to see if that makes a difference first. Thanks for info though.

 

[Delphinum]

Sorry to hear about your diagnosis, Stevie. I'll be interested to see what they do with me as I've just got my referral letter asking me to book an appointment with the diabetes team at Churchill Hospital in Oxford.

 

[duranie]

hi, I was diagnosed with peripheral neuropathy about 18 months ago. I was put onto amytriptyline at first but reacted to it - muscle spasms & shaking. I now take 600mg gabapentin 3 x a day. This helps, but as mine is extremely painful I need codeine & tramadol to help too. My doctor has also started me on prozac to further help - however the pain I suffer is life altering - hence the cocktail...

 

[mistee71]

I take amytriptyline at night coz it helps me sleep. I cant take it during the day as i would be seriously groggy. I'm allergic to tramodol and codeine makes me feel queezy and spaced out. :crazy: Whats left ? :lol: Anyway.. what do they do to diagnose you ?

 

[Octave88]

Hello Stevie,

I am taking the drug which was suggested for you; good thing to refuse this! For men, I would suggest care, as it had caused me major probs with my prostate! All the best to you!

John

 

[Octave88]

Hi Duranie,

Your posting has helped me. Thank you! I was a pianist, and for quite some time had these symptoms. Initially it was thought I had some for of MS; they are still unsure. I do have ME; and recognize each of the symptoms mentioned here!
Oddly, its the legs and feet I get cross with, as I can no longer easily play; typing is good tho!!!

Kind Regards

John

 

[Stevie2tone]

Been reading so much on Nuropathy since speaking to my nurse. So much info to take in. Scary fact I have come up with and seems I have to take in is that the effects I am feeling may well be irriversable

Obviously not very happy about this, so is this true?
As I have mentioned in my introductive post, I have denied my condition for so long and tried to completely ignore it. Now I realise at what cost to myself?
Really want to "man up" to this and have some autonomy with controlling it but cannot escape this really horrible feeling of have I left it too late and sevres me right!

I really don't wish to whine on here, appreciate everyone here has their own stuff to deal with. Guess I just using this place to scream at my own stupidty and sheer frustration of having no idea what to do

Steve