neuropathy

[Rik J]

hi Everyone
ive had type 1 diabetes for 48 years and i started getting pains in my arms and hands neck and shoulders, ive had an MRI and recently had tests with electric shocks in my hands and feet. they told me that i have severe Neuropathy and the results will be sent to me as to which type i have.
Anyone else have this who can tell me what to expect next? good or bad . the nurse said to me that with Diabetes you can be going along feeling ok and then ..bang!! it hits you all at once . sounded a bit drastic but id rather know than just imagine .. i would appreciate any thoughts

 

[Ink]

hi Everyone
ive had type 1 diabetes for 48 years and i started getting pains in my arms and hands neck and shoulders, ive had an MRI and recently had tests with electric shocks in my hands and feet. they told me that i have severe Neuropathy and the results will be sent to me as to which type i have.
Anyone else have this who can tell me what to expect next? good or bad . the nurse said to me that with Diabetes you can be going along feeling ok and then ..bang!! it hits you all at once . sounded a bit drastic but id rather know than just imagine .. i would appreciate any thoughts

Hi I have had Diabetes for the past 54years I have never been stable until 20 years ago when I went on the insulin pump which has been a life saver for me dispite the problems that first came going on the pump.
Six years ago I started getting a lot of pain in my Calves and feet which lead too me not been able too climb stairs up and down very easily which the doctors put it down too neuropathy I cannot feel my legs below my knees and get horrific pain shooting through my feet on a regular basis. I have been given the chance too have stimulation put in my spine for the neuropathy which should help.

 

[Rik J]

Hi I have had Diabetes for the past 54years I have never been stable until 20 years ago when I went on the insulin pump which has been a life saver for me dispite the problems that first came going on the pump.
Six years ago I started getting a lot of pain in my Calves and feet which lead too me not been able too climb stairs up and down very easily which the doctors put it down too neuropathy I cannot feel my legs below my knees and get horrific pain shooting through my feet on a regular basis. I have been given the chance too have stimulation put in my spine for the neuropathy which should help.

thanks for sharing that.
i went to see a consultant at the hospital and explained my symptoms. he was very good and sent me for an MRI the neck area and then on thursday i had electric pulses in my hands and feet , she said i had severe Neuropathy and i would be informed soon as to which neuropathy it was.
TBH it feels like my arms shoulders and hands and not so much, legs are sore like they've been over used . like a sore ache.
i hope you get the relief you need. i would certainly go for anything they offered . Good luck

 

[Ink]

Hi I have had Diabetes for the past 54years I have never been stable until 20 years ago when I went on the insulin pump which has been a life saver for me dispite the problems that first came going on the pump.
Six years ago I started getting a lot of pain in my Calves and feet which lead too me not been able too climb stairs up and down very easily which the doctors put it down too neuropathy I cannot feel my legs below my knees and get horrific pain shooting through my feet on a regular basis. I have been given the chance too have stimulation put in my spine for the neuropathy which should help.

Hi Rik J
Thank you for your reply I have had electric pulses in my back which did not work and I have also tried Lidacan intravenous once a month for four months the first one worked but after that I did not get any relief but does work for a lot of people. Good luck with trying too deal with the pain I hope you find a way around it.

 

[TimLibre]

Hey, I also have pain in my shoulder and triceps. Sometimes tinglings in my arm or hand. It seems to come from my armpit.

The hospital made a normal röntgen photo and a echo but they could only find minor calcifications.
Stretching excersises seem to help a bit but just tenporary. The pain was really bad some months ago, when i could not find a single position/attitude in which my arm would not start to hurt. Its gotten a bit better now. Currently the pain and tinglings are triggered only when Im driving or laying or when laying/sitting in certain positions. I also cant do any power excersises at the gym as they make it worse.

Im a bit confused my doctor isnt linking this to diabetes or neuropathy but at the same time hoping it isnt that..I have diabetes for 20 years now. Since the Libre managing goes well, around 70/80% of time in range. But when i was younger it was harder. I suppose 70/80% should be ok..

A friend of mine who has diabetes had tunnel syndrom and she got a surgery. She had the same type of complaints. I still have to ask her if the surgery worked. Only know it didnt look very nice when she just had it, with swollen hand and stuff.

Good luck with your situation, hope they can help you!

 

[Lin31]

Hi I have had Diabetes for the past 54years I have never been stable until 20 years ago when I went on the insulin pump which has been a life saver for me dispite the problems that first came going on the pump.
Six years ago I started getting a lot of pain in my Calves and feet which lead too me not been able too climb stairs up and down very easily which the doctors put it down too neuropathy I cannot feel my legs below my knees and get horrific pain shooting through my feet on a regular basis. I have been given the chance too have stimulation put in my spine for the neuropathy which should help.

Revitive Medic Circulation Booster
I dont know if this will help anyone here .. i have been type 2 for at least 5/6 years ..maybe longer.. I was started on metformin tablets .. not long after i started getting numbness in my feet . At that time you could see a dr at my gps. the dr told me my feet were fine i had a pulse in them ?? any way fast forward no drs in sight ? have seen a diabetic nurse a few times who have always reasured me my legs and feet are fine .. Although legs and feet numb and painful .. so i went to my local foot clinic . he said i have Neuropathy and the diabetic nurses have not been doing the tests ?? properly ? he wrote to my dr asking for me to be reffered to a neurologist ?? i now have an appointment for blood tests ?? at drs ..still hoping for referal ??
the foot clinic suggested i got .. Revitive Medic Circulation Booster .. i got one from boots who have offers and diabetics get 20% off . i have used it for a week and so far it seems to be helping .. my legs are not so painful and my feet seem to be warmer ?? to touch ? and not so twitchy ? so i think it is helping with my circulation .

 

[AshleyEatly]

I am a type-2 diabetic now due to diet low carb/fast 800 I am in remission.
Had to go private to get diagnosis because my surgery and diabetic nurse were to be honest making me feel as if I was incorrect but it started with difficulty with steps legs feeling increasingly weak and then feet getting painful and numb eventually writing and dexterity became issue.
I was diagnosed with CIDP which is not diabetic neuropathy but symptoms are similar.
I had the nerve conduction tests that measured how my nerves were operating and how good the signals were returning to nerve centre. Essentially the chronic inflammatory demyelating poly neuropathy was attacking nerve sheath.
I was told that couldn’t get treatment privately but waited for a while to get into NHS system to have the private diagnosis checked and wait to get treatment which I just started which is intravenous immunoglobulin infusions - first set completed 8 weeks ago - wonderful results and just having second course which is 4 days in day clinic now told it’s probably every 4 weeks..
But I had MRI scans and still felt that they were trying to find some other reasons for problem including spine issues.. in end I am having the treatment I was told I needed by private health specialists..
So now in system I can’t fault the NHS and day 1 I was given sheet that came with the infusion bottles… and it was there all my symptoms how it normally starts and progresses… boy was I so angry at my NHS clinic… Shortly I have my first diabetic check since all this and I will be providing them with a copy of this sheet… talk about feeling it’s down to the patient to research and find answers and try to educate the clinic nurses and doctors.. I don’t expect they will take note…

I don’t know if diabetic neuropathy would have followed my same tests but suspect so…
I am determined not to make things worse by adding diabetic neuropathy to the mix - so paying for my own libre sensors and diabetic metering. Trying to keep on the low carb lifestyle which helps with sugars and secondarily helps with weight. I don’t necessarily agree it’s weight issues that cause type-2 but complex mixture primarily having sugar spikes and need for insulin spikes.

Now I feel I can start again with gym strength training maybe cycling walking still painful on feet that do suffer with things I blame on inability to walk much…plantar fasciitis maybe and joint stiffness.

Dunno if this helps but you are not alone..
And I can write again too

 

[Prancy]

I don’t think most people realize how distressing this condition can be. My heart goes out to you all.

I just wanted to acknowledge that there are multiple causes that may be involved. I was told by my first neurologist and several orthopedic podiatrists that I did not have neuropathy, though my primary suspected I did based on tne symptoms.

My second neurologist diagnosed me with Vitamin B12 deficiency and I went on proper treatment, since I have an absorption problem. I also have post covid syndrome. And, I have Type I diabetes. Soooo….we aren’t sure exactly what caused numbness in my feet and tingling, stinging hands. HOWEVER, after mega doses of Vitamin B12, I’m seeing amazing reduction in symptoms! Still pursuing the culprit with a Rheumatologist. Neurologist says recovery is uncertain, but may take a year to restore my reserves.

It’s important to test B12 BEFORE you start taking it, as that skews the result.

 

[Rik J]

its worth a try thanks for the information . much appreciated

 

[Rik J]

I am a type-2 diabetic now due to diet low carb/fast 800 I am in remission.
Had to go private to get diagnosis because my surgery and diabetic nurse were to be honest making me feel as if I was incorrect but it started with difficulty with steps legs feeling increasingly weak and then feet getting painful and numb eventually writing and dexterity became issue.
I was diagnosed with CIDP which is not diabetic neuropathy but symptoms are similar.
I had the nerve conduction tests that measured how my nerves were operating and how good the signals were returning to nerve centre. Essentially the chronic inflammatory demyelating poly neuropathy was attacking nerve sheath.
I was told that couldn’t get treatment privately but waited for a while to get into NHS system to have the private diagnosis checked and wait to get treatment which I just started which is intravenous immunoglobulin infusions - first set completed 8 weeks ago - wonderful results and just having second course which is 4 days in day clinic now told it’s probably every 4 weeks..
But I had MRI scans and still felt that they were trying to find some other reasons for problem including spine issues.. in end I am having the treatment I was told I needed by private health specialists..
So now in system I can’t fault the NHS and day 1 I was given sheet that came with the infusion bottles… and it was there all my symptoms how it normally starts and progresses… boy was I so angry at my NHS clinic… Shortly I have my first diabetic check since all this and I will be providing them with a copy of this sheet… talk about feeling it’s down to the patient to research and find answers and try to educate the clinic nurses and doctors.. I don’t expect they will take note…

I don’t know if diabetic neuropathy would have followed my same tests but suspect so…
I am determined not to make things worse by adding diabetic neuropathy to the mix - so paying for my own libre sensors and diabetic metering. Trying to keep on the low carb lifestyle which helps with sugars and secondarily helps with weight. I don’t necessarily agree it’s weight issues that cause type-2 but complex mixture primarily having sugar spikes and need for insulin spikes.

Now I feel I can start again with gym strength training maybe cycling walking still painful on feet that do suffer with things I blame on inability to walk much…plantar fasciitis maybe and joint stiffness.

Dunno if this helps but you are not alone..
And I can write again too

thanks for your post good luck and thanks for sharing your story

 

[Rik J]

hi Everyone
ive had type 1 diabetes for 48 years and i started getting pains in my arms and hands neck and shoulders, ive had an MRI and recently had tests with electric shocks in my hands and feet. they told me that i have severe Neuropathy and the results will be sent to me as to which type i have.
Anyone else have this who can tell me what to expect next? good or bad . the nurse said to me that with Diabetes you can be going along feeling ok and then ..bang!! it hits you all at once . sounded a bit drastic but id rather know than just imagine .. i would appreciate any thoughts

hi ,quick update,
Altough i was told i had severe neuropathy, three weeks later a letter arrived saying it is moderate neuropathy so no so bad but i take it as a warning

 

[sreid95]

I've had neuropathy in my legs and feet since I was diagnosed (when I was 20). I had 2 weeks after diagnosis of type 1 which was relatively normal then all of a sudden I got severe pains right up my legs and feet. I also developed dense cataracts. The doctors hadn't seen anything like it and I still haven't got an answer why it all happened nearly 10 years later. I am currently on Duloxetine and Baclofen for the pains and generally speaking it dulls the pain but doesn't take it away.

 

[Rik J]

I've had neuropathy in my legs and feet since I was diagnosed (when I was 20). I had 2 weeks after diagnosis of type 1 which was relatively normal then all of a sudden I got severe pains right up my legs and feet. I also developed dense cataracts. The doctors hadn't seen anything like it and I still haven't got an answer why it all happened nearly 10 years later. I am currently on Duloxetine and Baclofen for the pains and generally speaking it dulls the pain but doesn't take it away.

Sorry to hear of your suffering i hope that in those ten years it hasnt got a lot worse and also did you have the cataracts removed?