Diabetic Plexopathy (Type 2) - anyone else have this?

[Haricot]

Hi - I was diagnosed with Diabetic Plexopathy 8 months ago (also known as diabetic amyotrophy, diabetic lumbosacral radiculoplexus neuropathy, Bruns-Garland Syndrome) despite my diabetic control being "excellent" according to my GP. None of the usual diabetes sites appear to address this particular neuropathy in any detail, if at all. I would love to share experiences with/chat to anyone else who has this condition. All of the information I have learned about this condition comes from my own research on the internet (the neurologist only saw me once at the beginning of the diagnosis process and my GP has offered no real information). I am aware that there is no treatment and that only a percentage of people regain any muscle strength over a period of 18-24 months. I fear that I am not in that percentage as I have seen no improvement despite physio and now going to the gym. So - anyone out there?

 

[Northerner]

Hi Haricot, welcome to the forum 🙂 Sorry to hear about this, it's something I hadn't encountered before. Hopefully, even if we don't currently have other members with the same condition, someone will google it and find your post so you have someone to discuss it with.

Have you been diagnosed long?

 

[Haricot]

Hi Northener - I was finally diagnosed in May 2013. I have had Type 2 diabetes for around 7 years and my control has been excellent for around 4 to 5 years at least. In fact, having finally managed to lose a lot of weight, I no longer take Gliclazide and may be taken off Metformin later this year ie no longer considered to be diabetic.

 

[NJW]

Hi

Hi,

I am also new to the forum.

I would be interested in learning anything I can about neuropathy and other folks experiences. There seems to be little understanding of the condition and the NHS is not very interested once your glycaemic control is good.

I was diagnose about 8-months ago. I am type 2 with elevated GAD antibody levels. Until very recently I suffered with debilitating neuropathy pain in the: shoulders; hips; thighs; abdomen; and had chronic weakness, which kept me from working for 6-months. Then I discovered Pregabalin.

I am still very weak, but improving slowly and have also been going to the gym. This does seem to be starting to help me with the weakness.

I am also afraid that If I am not back to normal after 12-18 months that, might be as good as it gets. A frightening thought.

 

[Northerner]

Hi NJW, welcome to the forum 🙂 I hope that you continue to make good progress and that things improve for you 🙂

 

[Copepod]

Welcome to the forum, NJW.

You might like to start a thread in Newbies section, so that you will be welcomed by many more members.

I hope that Pregabalin and gym continue to work for you 🙂

 

[pondita]

Hi

Hi,

I am also new to the forum.

I would be interested in learning anything I can about neuropathy and other folks experiences. There seems to be little understanding of the condition and the NHS is not very interested once your glycaemic control is good.

I was diagnose about 8-months ago. I am type 2 with elevated GAD antibody levels. Until very recently I suffered with debilitating neuropathy pain in the: shoulders; hips; thighs; abdomen; and had chronic weakness, which kept me from working for 6-months. Then I discovered Pregabalin.

I am still very weak, but improving slowly and have also been going to the gym. This does seem to be starting to help me with the weakness.

I am also afraid that If I am not back to normal after 12-18 months that, might be as good as it gets. A frightening thought.

HI NJW. i was wondering how things are going for you, and if you've received any recovery. I am having lots of hip and lower back pain, and the only thing I've been able to think it might be is Bruns Garland syndrome. I was diagnosed with IDDM one year ago, and have continually had this pain, waxing and waning, but never disappearing. So I'm doing online research to try to see if my symptoms fit. I would love to hear more from you.

 

[pondita]

Hi - I was diagnosed with Diabetic Plexopathy 8 months ago (also known as diabetic amyotrophy, diabetic lumbosacral radiculoplexus neuropathy, Bruns-Garland Syndrome) despite my diabetic control being "excellent" according to my GP. None of the usual diabetes sites appear to address this particular neuropathy in any detail, if at all. I would love to share experiences with/chat to anyone else who has this condition. All of the information I have learned about this condition comes from my own research on the internet (the neurologist only saw me once at the beginning of the diagnosis process and my GP has offered no real information). I am aware that there is no treatment and that only a percentage of people regain any muscle strength over a period of 18-24 months. I fear that I am not in that percentage as I have seen no improvement despite physio and now going to the gym. So - anyone out there?

Hi Haricot. i was wondering how things are going for you, and if you've received any recovery. I am having lots of hip and lower back pain, and the only thing I've been able to think it might be is Bruns Garland syndrome. I was diagnosed with Type I one year ago, and have continually had this pain, waxing and waning, but never disappearing. Before my diagnosis, I have always been very fit. So I'm doing online research to try to see if my symptoms fit because I would love to get some relief! I would love to hear more from you.

 

[grovesy]

Both the posters on this thread who you have addressed, have nit visited the forum since 2014, so you may jot get a response.

 

[pondita]

Both the posters on this thread who you have addressed, have nit visited the forum since 2014, so you may jot get a response.

Thank you. Yes I saw date that but it’s the only forum on the topic I’m interested in. So I thought I’d take the chance of a response.