Loss of sensation in feet, 29 and scared for future :-(

[VixyA86]

Hi I am fairly new to this but thought I'd come here to see if anyone could give me any advice / optimism.

I'm 29 and have had Type 1 Diabetes since I was 14. I've struggled for years to be able to control it, and developed some mild neuropathy in my feet in my early 20s, which until recently was controlled with a low dose of Pregabalin and never caused me any issues. In the last few months I've managed to really get on top of things and my control is better than it has been in years. However my neuropathy symptoms have suddenly changed and gone much worse. I can no longer tell whether things are hot or cold, sharp or blunt; basically there's very little sensation there at all now from the ankle down, although it's actually affecting my lower leg above the ankle too. There's no pain as there used to be so increasing the Pregabalin dose probably wouldn't help. I'm so scared about how this is going to progress and affect me in the future, so I just wondered if there was anyone else that has experienced this and if so how they manage it; It'd be even better to hear anyone's stories about how they've managed to improve things and regain some, if not all, of the sensation where numbness had taken over. No negative stories/comments please - I believe in the body's ability to heal itself so would welcome replies from positive people who share similar beliefs Thanks, Vicky

 

[Mrsass]

Hi Vicky, sorry to hear about the problems you're having hun.

I can't relate to it as I haven't had problems like that myself but someone else might come along that has & can share their experience.

Have you been back to your docs about it and see what advise they give?

Abbie x

 

[tim2000s]

I've tagged @Omnipod and @CarbsRok as I think one of them has mentioned dealing successfully with complications.

 

[donnellysdogs]

Are your levels staying within 2.8 increase or decrease after eating etc?
If your levels are swinging in any direction by more than this then you still need a tad improving with your bgs to help your neuropathy..
I believe in regenerating but personally I believe that optimal healing takes place without any large swings..

 

[zand]

Can anyone else help Vicky?

I'm a T2, I don't know what your diet is like, but I would say if you follow a low carb diet it is easier to control your BG's, and cut out large swings in BG's even as a T1, There will be less chance in an error with your meds if you low carb and therefore it will be easier to maintain a more level BG range and cut out the swings.

I really don't know how to help you with your current problems., as I have not experienced them. I am looking to the future hoping that things won't get worse for you. The only thing I can suggest that may help is changing to a low carb higher (natural) fats diet. If you are following this already I am sorry to have wasted your time. @Dillinger , @Spiker , @Heathenlass ?

I did have a numb leg, covering about an eighth of the leg above the knee. This was not due to diabetes. This was due to nerves being cut through during an operation. The surgeon told me it would never heal. Two and a half years later, I have some feeling there now. As I say my situation is very different to yours, but there's always hope. If anything can help the body to heal itself then an LCHF diet can.

Oh yes and I expect someone will be along soon to say see your GP too.

 

[Heathenlass]

I've read a few people's accounts of neuropathy symptoms temporarily worsening as tighter control is achieved, then improving,so I'm wondering if this is happening in your case ?

I agree with @donnellysdogs too.

Signy

 

[catherinecherub]

There is a thread here,

http://www.diabetes.co.uk/forum/threads/help-in-dealing-with-neuropathy.74653/
and it is worth reading @Omnipod's post.

http://www.diabetes.co.uk/forum/threads/help-in-dealing-with-neuropathy.74653/#post-816595

 

[zand]

Vicky I notice you say the neuropathy was well controlled with Pregabalin. Is your diabetes well controlled too? What are your HbA1c's like?

 

[Dillinger]

Vicky have a look at what Omnipod says here; http://www.diabetes.co.uk/forum/threads/neuropathy.69834/#post-722690

I would suggest Alpha Lipoic Acid and Thiamine/Benfotiamine (vitamin B1) as well; you need to be low carbing too if you want to further tighten up your control.

ALA & B1
http://link.springer.com/article/10.1007/s00125-008-1100-2

Just B1
http://www.ncbi.nlm.nih.gov/pubmed?cmd=retrieve&list_uids=15726875

Being positive is one thing, but you need to take some action too.

Best

Dillinger

 

[Flowerpot]

Hi Vicky

Do you go to a diabetic podiatry clinic for regular checks? They can do a filament test to see what sensation issues you have and are great at suggesting ways to look after and protect your feet. Ask your gp to check your Vitamin B12 level if you haven't had it tested, as that plays a vital role in nerve function, if it is low it can be boosted by a course of injections followed by capsules.

It is perverse but tightening your control rapidly can sometimes make symptoms worse before things start to settle down. I hope that things start to improve for you soon.

 

[Robinredbreast]

Hi Vicky, sorry but I cant help with your medical problems, can you tell us what Pregabalin is used for and how is your diabetes control now, you have such a lot going on and you are only 29.
I haven't had any experience with your medication or symptoms. I would go back to your GP and ask to be referred to a specialist, you need help and guidance and also, is the medication you are taking helping you or making things worse !!
I hope you can get some relief and some answers too, please take care and sometimes you just have to keep knocking on the doctors door loud enough for them to sit up and listen to what is going on with you.
If GP is not listening, then it's time to change to another doctor or register with another surgery. Stay safe.

Good luck, best wishes

RRB

 

[zand]

@Robinredbreast I googled Pregabalin. It's use to treat diabetic neuropathy, so it isn't to control the diabetes as such. I am wondering what Vicky's doctor did to help her with her diabetes control when the neuropathy started. I would have thought that great BG control would have been an absolute must when a person so young gets neuropathy as better control could help the situation. Pregabalin only masks the symptoms it doesn't treat the cause which is blood glucose levels that are too high, or which swing too much from high to low and back again.

 

[Robinredbreast]

@Robinredbreast I googled Pregabalin. It's use to treat diabetic neuropathy, so it isn't to control the diabetes as such. I am wondering what Vicky's doctor did to help her with her diabetes control when the neuropathy started. I would have thought that great BG control would have been an absolute must when a person so young gets neuropathy as better control could help the situation. Pregabalin only masks the symptoms it doesn't treat the cause which is blood glucose levels that are too high, or which swing too much from high to low and back again.

Thanks for that Zand, OP did say her levels are better but how better I don't know, and hopefully she will be able to post again with a little more information. It is always better to treat the cause first, but if her GP isn't helping her with the awful symptoms,( she should be referred to a specialist ) or get a second opinion or change GP's. OP must be feeling so low with her ongoing problems and probably feeling she has been cast aside and just left, which should not be happening. She's only 29 !!

Best wishes RRB

 

[noblehead]

I've read a few people's accounts of neuropathy symptoms temporarily worsening as tighter control is achieved, then improving,so I'm wondering if this is happening in your case ?

Yes indeed, I've read several accounts on the forum of this happening so it may/may not be applicable to the OP.

@VixyA86 I would go back to your Dr's and ask to be referred to a specialist as Flowerpot and RRB have suggested. Good luck.

 

[CarbsRok]

I've tagged @Omnipod and @CarbsRok as I think one of them has mentioned dealing successfully with complications.

That must be Omnipod as I don't have any complications

In the last few months I've managed to really get on top of things and my control is better than it has been in years. However my neuropathy symptoms have suddenly changed and gone much worse. I can no longer tell whether things are hot or cold, sharp or blunt; basically there's very little sensation there at all now from the ankle down, although it's actually affecting my lower leg above the ankle too.

As others have stated sometimes neuropathy and also retinopathy can become worse with sudden tightening of control. You do very much need to ask for a referral though as the more help you can get now sooner rather than later will help you out in the long run.
Wishing you well.

 

[TopoGigi]

Hi Vicky
Just to say I went through a similar experience to yours with numbness and loss of feeling hot/cold in both my legs and feet below the knees when I was in my 20's, (in the 80's) this went on for a couple of years and nobody knew what to do with me, my control was pretty bad in my teens and twentys. I eventually saw a renowned Neurologist at The Royal Free Hospital who diagnosed me with peripheral neuropathy but in those days there was no treatment other than a couple of drug trials. With better control my symptons improved but it did take a couple of years, nerves take an awful long time to regenerate, I did get most of the feeling back in both legs, able to tell the difference between hot and cold, no longer had pain.
However I did have repeat nerve conduction tests done at The National Hospital last year and I still have evidence of nerve damage but so much better than I was in my younger years!

 

[Clivethedrive]

Hi I am fairly new to this but thought I'd come here to see if anyone could give me any advice / optimism.

I'm 29 and have had Type 1 Diabetes since I was 14. I've struggled for years to be able to control it, and developed some mild neuropathy in my feet in my early 20s, which until recently was controlled with a low dose of Pregabalin and never caused me any issues. In the last few months I've managed to really get on top of things and my control is better than it has been in years. However my neuropathy symptoms have suddenly changed and gone much worse. I can no longer tell whether things are hot or cold, sharp or blunt; basically there's very little sensation there at all now from the ankle down, although it's actually affecting my lower leg above the ankle too. There's no pain as there used to be so increasing the Pregabalin dose probably wouldn't help. I'm so scared about how this is going to progress and affect me in the future, so I just wondered if there was anyone else that has experienced this and if so how they manage it; It'd be even better to hear anyone's stories about how they've managed to improve things and regain some, if not all, of the sensation where numbness had taken over. No negative stories/comments please - I believe in the body's ability to heal itself so would welcome replies from positive people who share similar beliefs Thanks, Vicky

Hello vicky, just got in and reading your post, 1 st i had very painful neuropathy in both my feet , felt like i was walking on razors,hot and then numb etc,that was back in sept14, but since finding this forum and with the help and advice of these wonderful people here, i have managed to reverse it,it took about 5 months to achieve but by lchf regime its gone now i'm ok.
The nerve endings which get damaged regrow again,but as they do its just as painful as when they were being damaged in the first place , so rest assured , you will get better, read up on dr r bernstein's diabetes explained 3 rd edition,he explains the process better than i can. All the best , let us know how you get on .

 

[zand]

Yes my leg has been very painful at times, then after each bout of pain I realise I have recovered a bit more feeling in the part which was numb.

@Clivethedrive I'm so glad LCHF worked for you

 

[Clivethedrive]

Yes my leg has been very painful at times, then after each bout of pain I realise I have recovered a bit more feeling in the part which was numb.

@Clivethedrive I'm so glad LCHF worked for you

Yes it was puzzling until i got a real explanation from dr bernstein, this reassured me and helped me continue on with lchf regime, my last hba1c in march was 5.2% my doc said hmmm bit low we'll have to get it up a bit.......

 

[Dillinger]

Yes it was puzzling until i got a real explanation from dr bernstein, this reassured me and helped me continue on with lchf regime, my last hba1c in march was 5.2% my doc said hmmm bit low we'll have to get it up a bit.......

Wow! I thought doctors only said things that stupid to Type 1's! You've normalised your blood sugars and the response is; well let's see if we can mess it up a bit more...