Neuropathy or not to be?

[Pdsmcd]

In 2016 I began with short, pulsating, stabbing pains in my left calf muscle, a small dose of Amitriptyline helped. I thought it was possibly post herpetic neuralgia, and my GP agreed. About 12mths later, small blisters appeared on my left foot that crusted over and dropped off. Medics believed it was akin to athletes foot. The affected area has to this day still been sensitive to touch.
As the years progressed pain in my feet, predominately left, intensified in different areas, with differing sensations, burning, stabbing, aching, pins and needles.
Medics believed that it was Diabetic Peripheral Neuropathy. Over the past eight years I have taken upto the max daily dose of Amitriptyline, Duloxetine, Gabapentin, Pregabalin, Codeine, Dihydrocodeine, Tramadol and pure Arsenic, as well as topical creams.
None have worked, nore do they make me sleepy!
I asked a question this year of my GP saying that if the nerve pain medication is not working, is the pain coming from elsewhere, spinal?
I've had MRI scans of both feet and a scan of my lower back. There is some nerve compression but a spinal surgeon has indicated that there is nothing they can do.
I've had another set of nerve conduction studdies carried out, again indicating a possible nerve compression, but the surgeon cannot help.
I talked with a Neurologist during covid about my pain, and in his words, the pain was not commensurate with my level of diabetes.
Vascular studies have also said the same.
It is annoying when consultants hide behind 'get your bloods under control'.
My HbA1c peaked at 76, in December 23 after rising from 53 two years earlier. Latest was 52 in Sept 24. Average of 15 years is 58.
My current meds are Toujeo and FIASP.
I am now beginning to suffer random sharp stabbing pains all around my body, whish to me is indicative of nerve compression and I am waiting to see a Neurologist once again.
I know this is long post but I would like to hear if there are others with similar experiences especially with medication.
No doubt once I get to talk with a Neurologist again, they can dispel some of the symptoms.
I look forward to sharing information.

 

[everydayupsanddowns]

Sorry to hear about your painful symptoms. And also a about some of the confusing aspects where things don’t seem to be 100% lining up.

You’ve probably already covered these possibilities with the specialists you have seen, but have you had your Vit B12 level checked? Low levels of Vitamin B12 can give rise to some neuropathy-like symptoms.

I’ve also been reading this evening that excess Vit B6 can also lead to neuropathy. Do you routinely take one or more supplements?

 

[Docb]

Hi @Pdsmcd and welcome to the forum. I have much sympathy with your position. I have creeping neuropathy in my face which has been getting mote pronounced over the years. I have tried all the medications in your list, generally up to the level where the side effects were intolerable, had scans, lumbar punctures, nerve conduction tests and the net result is that the neurologist has no idea what is causing it and cannot give me a prognosis or offer anything other than the treatments I have tried without success.

I have just learned to live with it. i have come to the conclusion that neuropathic medicine is very much in its infancy and as you have seen, neurologist tend to hide behind fancy latinesque terminology which sounds good but is usually just another way of naming the symptoms you the patient has described to them.

Not a lot of help to you I know, but you are far from alone.

 

[Pdsmcd]

Sorry to hear about your painful symptoms. And also a about some of the confusing aspects where things don’t seem to be 100% lining up.

You’ve probably already covered these possibilities with the specialists you have seen, but have you had your Vit B12 level checked? Low levels of Vitamin B12 can give rise to some neuropathy-like symptoms.

I’ve also been reading this evening that excess Vit B6 can also lead to neuropathy. Do you routinely take one or more supplements?

B12 levels are fine

 

[Pumper_Sue]

In 2016 I began with short, pulsating, stabbing pains in my left calf muscle, a small dose of Amitriptyline helped. I thought it was possibly post herpetic neuralgia, and my GP agreed. About 12mths later, small blisters appeared on my left foot that crusted over and dropped off. Medics believed it was akin to athletes foot. The affected area has to this day still been sensitive to touch.
As the years progressed pain in my feet, predominately left, intensified in different areas, with differing sensations, burning, stabbing, aching, pins and needles.
Medics believed that it was Diabetic Peripheral Neuropathy. Over the past eight years I have taken upto the max daily dose of Amitriptyline, Duloxetine, Gabapentin, Pregabalin, Codeine, Dihydrocodeine, Tramadol and pure Arsenic, as well as topical creams.
None have worked, nore do they make me sleepy!
I asked a question this year of my GP saying that if the nerve pain medication is not working, is the pain coming from elsewhere, spinal?
I've had MRI scans of both feet and a scan of my lower back. There is some nerve compression but a spinal surgeon has indicated that there is nothing they can do.
I've had another set of nerve conduction studdies carried out, again indicating a possible nerve compression, but the surgeon cannot help.
I talked with a Neurologist during covid about my pain, and in his words, the pain was not commensurate with my level of diabetes.
Vascular studies have also said the same.
It is annoying when consultants hide behind 'get your bloods under control'.
My HbA1c peaked at 76, in December 23 after rising from 53 two years earlier. Latest was 52 in Sept 24. Average of 15 years is 58.
My current meds are Toujeo and FIASP.
I am now beginning to suffer random sharp stabbing pains all around my body, whish to me is indicative of nerve compression and I am waiting to see a Neurologist once again.
I know this is long post but I would like to hear if there are others with similar experiences especially with medication.
No doubt once I get to talk with a Neurologist again, they can dispel some of the symptoms.
I look forward to sharing information.

Have you been checked for MS?
Diabetic neuropathy affects both feet arms etc as bilateral.
Even though I've been type1 for 60 years only one side of me is numb and nerve conduction tests have shown no diabetic neuropathy.
Like you I went through stages of stabbing pains/pins and needles all over my body at random times then they disappeared and come back at random when they feel like it.

 

[Pdsmcd]

Have you been checked for MS?
Diabetic neuropathy affects both feet arms etc as bilateral.
Even though I've been type1 for 60 years only one side of me is numb and nerve conduction tests have shown no diabetic neuropathy.
Like you I went through stages of stabbing pains/pins and needles all over my body at random times then they disappeared and come back at random when they feel like it.

Thanks for replying, I haven't been checked for MS, yet!
I have a consultation with a Neurologist, early March. Will wait and see.
Cheers