Autonomic Neuropathy Help!

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MODYGirl

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Hello everyone,

I haven't been diagnosed but definitely have it with all my symptoms. For reference I carb count and use Lantus and NovoRapid insulin.

Neurologist already said I have small fiber neuropathy from presentation with burning feet.

Autonimic symptoms are much more bothersome and started first and seem to be increasing at an alarming rate. I have POTS symptoms, low blood pressure that comes and goes, adrenaline rushes that come from nowhere, temperature dysregulation, facial flushing, sore and achey limbs that come and go, tremors and twitches that come and go, dizziness and an aversion to heights, feeling very cold and shivering, internal vibrations, brain fog, coat hanger pain, fatigue, blurry vision and now I've started to wake at night with nausea which comes and goes all day with brief moments of stomach pains so I'm assuming probably gastroparesis now too.

Been diagnosed for 6 years. Hba1c at diagnosis was 44. I was treated for gestational diabetes 6 months before this and my Hba1c then was 54 - turned out not to be gestational and I then got my MODY diagnosis after being diagnosed as Type 1, then Type 2 first. Levels have ranged from 32-56 since then but mainly sit around the 40's.

Neurologist already said diabetes is the number one cause of small fiber neuropathy and that's what it is. I'm waiting on nerve conduction tests for large fiber involvement before he will see me again. I'm at my wits end.

Looking for others with experience of this hellish condition
 
Sorry to hear about the symptoms you are experiencing.

There's a little information about Autonomic Neuropathy here

Diabetic neuropathy (nerve damage)

What is diabetic neuropathy? Diabetic neuropathy is when diabetes causes damage to your nerves. It can affect different types of nerves in your body, including in your feet, organs and muscles. Nerves carry messages between the brain and every part of our bodies so that we can see, hear, feel...
www.diabetes.org.uk www.diabetes.org.uk

and here

www.nhs.uk

Peripheral neuropathy - Symptoms

The symptoms of peripheral neuropathy vary according to the type of peripheral neuropathy you have. They may develop quickly or slowly.
www.nhs.uk www.nhs.uk

You might like to call the Diabetes UK Helpline when it reopens on Monday (Mon-Fri 9-6 on 0345 123 2399) to chat things through with the friendly helpline advisers.
 
My impression is that for members here who experience symptoms of neuropathy, it seems to be something that builds up gradually over quite a long period.

It does seem (to my completely unqualified lay perspective) that yours has come on quite quickly, and during a period where your blood glucose seems to have been relatively well managed.

There are forms of transient neuropathy that can be triggered following a rapid improvement of average glucose levels over a fairly short time (sometimes called treatment-induced neuropathy). In some cases this can clear up in time, but other forms of neuropathy seem to need longer term ‘steady’ blood glucose management to help slow progression and / or reduce flare-ups of symptoms.

Hope the nerve conduction checks shed some light on things for you, it sounds like a very difficult situation :(
 
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