Neuropathy: Plexopathy

[Carole03]

I was diagnosed T2 in 2022 and lost 2.5 stone fast, taking my HBA1C down to 46 (from 71). I then noticed numbness to my leg and restricted movement. When i first noted thsi to doctor she said "are you sure?". After waiting 12 months to see a neurologist, and many tests, I was diagnosed with Lumber Sacral Plexopathy later last year, which followed with a flurry of appointments to diabetes consultant, podiatrist etc. Im now on medication and trying desperately to control my BG better.
My left leg has lost so much muscle that I now struggle walking with 2 crutches and attend physio.
Is there anyone else on here that's experienced anything similar?
How do you manage it.
Anyone know what the long term prognosis is?

 

[lovinglife]

Hi @Carole03 & welcome to the forum

So sorry you are suffering with this, I’m not aware of anyone on the forum having this condition, but that doesn’t mean there isn’t .we can’t really give advice on things like prognosis, diagnosis, meds etc but what we can do is share our experiences and knowledge so hopefully there may be someone who can help with some of your questions

 

[MrsA2]

A new one to me and a quick Google says it is caused by soem sort of injury (may have been a long time ago) so not caused by diabetes (as far as I can tell)
So usual advice to keep sugars and weight low to alleviate symptoms and in case surgery is needed.
Obviously limits your ability to exercise but you might want to check out chair based exercise classes on line to keep the rest of you as mobile as possible.

Someone maybe along with rela experience but I don't think its ever been mentioned on here, yet.
You are a trail blazer!

 

[KennyA]

Hi there, I suffer the same sadly but I think you will find there is a thing called diabetic neuropathy which is caused by High Blood Glucose levels damaging the nerve ends. Unfortunately not reversible but yes try and keep blood sugars down to prevent further damage.
Ella Fitzgerald had her legs amputated after years of suffering, a very sobering thought !

This simply isn't true. I had diabetic neuropathy and it was eminently reversible once I brought my BG down. It went in about four months.

While it is true that Ella Fitzgerald had a double amputation, I have never found anything to connect it with neuropathy. Given that she was in the last couple of years of her life and had numerous other diabetic-related conditions, I am not sure anyone could be quite so specific as to cause.

 

[NicholasSayer]

I am sorry my attempt to assist has caused a debate. I am relating what a leading specialist in Endocrine and Diabetes from Addenbrook hospital told me.
I have had type 3c Diabetes since 2010 when my Pancreas broke down and no longer works in any shape or form. After two years of struggling to keep my glucose levels stable and many visits to the Neuropathic departments I was told after connecting electrodes to the legs that the nerves had been damage and that damaged was irreversible. I now have very little feeling in my feet or my lower legs. The specialist quoted EF as an example of what can happen.

I will have a word with him next month when I go for my check up and quote what you have stated. Sorry I wasn’t any help here but wishing you and all that suffer from this very nasty disease all the very best for the future.

 

[KennyA]

I am sorry my attempt to assist has caused a debate. I am relating what a leading specialist in Endocrine and Diabetes from Addenbrook hospital told me.
I have had type 3c Diabetes since 2010 when my Pancreas broke down and no longer works in any shape or form. After two years of struggling to keep my glucose levels stable and many visits to the Neuropathic departments I was told after connecting electrodes to the legs that the nerves had been damage and that damaged was irreversible. I now have very little feeling in my feet or my lower legs. The specialist quoted EF as an example of what can happen.

I will have a word with him next month when I go for my check up and quote what you have stated. Sorry I wasn’t any help here but wishing you and all that suffer from this very nasty disease all the very best for the future.

I am quite willing to accept that your neuropathy is not reversible. But you didn't say that. You said "...a thing called diabetic neuropathy which is caused by High Blood Glucose levels damaging the nerve ends. Unfortunately not reversible...". There are many people on this forum who have got rid of neiropathy.

And Ella F did have a huge number of advanced diabetic complications - including respiratory problems and congestive heart failure, according to Wikipedia, in addition to the eventual amputations. All of these might have been avoided had she reduced her blood glucose levels.

 

[Caprock94]

This simply isn't true. I had diabetic neuropathy and it was eminently reversible once I brought my BG down. It went in about four months.

While it is true that Ella Fitzgerald had a double amputation, I have never found anything to connect it with neuropathy. Given that she was in the last couple of years of her life and had numerous other diabetic-related conditions, I am not sure anyone could be quite so specific as to cause.

Other than keeping blood sugar down, what else did you do to reverse yours? Mine came on immediately after lowering blood sugar back to normal range after diagnosis. Probably TIND. Its been 5 years now. Each year it slowly got better. Had pretty much gotten to the point to where I hardly noticed it until a few weeks ago. It has flared up in a big way lately, and not sure why. Blood sugar levels still good.

 

[KennyA]

Nothing else. Mine started around 2014 and became very painful very quickly. I had a combination of the pins and needles and stabbing pains, plus "burning feet" particularly at night. I was told it wasn't diabetes. Analgesia of various kinds had no effect.

Eventually diagnosed in December 2019, cut carb to 20g/day immediately. By April 2020 BG was normal (36) and in those months the neuropathy pain had gone. I didn't do anything else other than cut carb.

 

[ianf0ster]

Type 2 diabetes is reversable for some/many, but not for all (as can be seen in this forum). The same applies to diabetic neuropathy.

 

[Carole03]

A new one to me and a quick Google says it is caused by soem sort of injury (may have been a long time ago) so not caused by diabetes (as far as I can tell)
So usual advice to keep sugars and weight low to alleviate symptoms and in case surgery is needed.
Obviously limits your ability to exercise but you might want to check out chair based exercise classes on line to keep the rest of you as mobile as possible.

Someone maybe along with rela experience but I don't think its ever been mentioned on here, yet.
You are a trail blazer!

HaHa Dont feel like a trailblazer. Yes its diabetes related - used to be called Bruns Garland syndrome and effects circa 1% apparently.

 

[Carole03]

I am sorry my attempt to assist has caused a debate. I am relating what a leading specialist in Endocrine and Diabetes from Addenbrook hospital told me.
I have had type 3c Diabetes since 2010 when my Pancreas broke down and no longer works in any shape or form. After two years of struggling to keep my glucose levels stable and many visits to the Neuropathic departments I was told after connecting electrodes to the legs that the nerves had been damage and that damaged was irreversible. I now have very little feeling in my feet or my lower legs. The specialist quoted EF as an example of what can happen.

I will have a word with him next month when I go for my check up and quote what you have stated. Sorry I wasn’t any help here but wishing you and all that suffer from this very nasty disease all the very best for the future.

Many thanks.
There seem to be many forms of Diabetes neuropathy as I'm learning.