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Please help re neuropathy!

M

ModyGirl

Well-Known Member
Messages
55
Type of diabetes
MODY
Treatment type
Insulin
I have taken the time to write down my hba1c's since diagnosis for other people's interpretations. The more frequent results correspond with pregnancies;
July 2016 - 54
Sept 2016 - 42
June 2017 - 41
April 2018 - 34
March 2019 - 37
June 2019 - 34
August 2019 - 32
Oct 2019 - 34
May 2020 - 45
Dec 2020 - 47
Aug 2021 - 51
April 2022 - 49
Dec 2022 - 56
May 2023 - 49

My endocrinologist is adament I should and do not have complications according to my results but the neurologist says otherwise.

I have burning feet that comes and goes but yesterday was the worst it has been and I'm so worried about it getting worse. My legs sometimed feel restless and I feel like I havr patches of sunburn all over me. Also sometimes get the feeling of internal vibrations. Some faint tingling in my hands also.

Had an iron infusion 10 days ago and neuropathy seems to have got WORSE. Also have all signs of autonomic neuropathy. Nausea, tachycardia, low blood pressure, temperature dysregulation (all symptoms come and go and most of these did start after having covid which may be a coincidence).

I do not want to end up on nerve pain meds - the side effects sound awful. I have ordered R-Alpha Lipoic Acid, Benfotiamine, D3+K2, Magnesium Glycinate and Jarrow Methyl B12+Folate.

Is there anything else I can do to help heal this? Is healing even possible? I'm a 34 year old mum of two young kids and a teacher - I can't believe myself that I've ended up with these symptoms. Help!
 
I have non diabetic peripheral neuropathy - caused by years of GPs ignoring or misdiagnosing symptoms of low folate. On long term folate it did improve, but then a change in GPs and it was removed from my meds, so my folate crashed again.
Now back on repeat, and awaiting referral.
 
@TriciaWs I have also been folate deficient twice since all this started happening! Hoping the methyl b12 with folate I have ordered will help. Do you mind me asking you what your symptoms were/are?
 
ModyGirl said:
@TriciaWs I have also been folate deficient twice since all this started happening! Hoping the methyl b12 with folate I have ordered will help. Do you mind me asking you what your symptoms were/are?
Click to expand...

Tingling, restless legs at night, some loss of sensation - the most obvious issue was 'not knowing where my feet were' when stepping off a kerb after standing a couple of minutes. That led to several falls. I was referred to a neurologist for another issue and he ordered the folate test and the nerve conduction test for my legs and arms.
 
@TriciaWs my feet have a burning sensation which is progressively getting worse. I've also had the restless legs and a faint tingle in my hands. Have you found relief from it? My folate was 2.1 the first time I was deficient and 3 the next. It was 6.6 at last check but who knows how long it will stay up for.
 
ModyGirl said:
@TriciaWs my feet have a burning sensation which is progressively getting worse. I've also had the restless legs and a faint tingle in my hands. Have you found relief from it? My folate was 2.1 the first time I was deficient and 3 the next. It was 6.6 at last check but who knows how long it will stay up for.
Click to expand...
I found after a few months on 5mg folate a day some of the nerve symptoms improved.

But I'm also on pregabalin for restless legs.
 
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