Does anyone on this forum suffer from Diabetic Amyotrophy?

[Carole Reilly]

I have recently been diagnosed after going through almost a year of extreme pain and muscle wastage and weakness in both legs.
I’m not using this forum as a complaining platform, but would be interested to hear from anybody else who has suffered this debilitating rare complication of diabetes.

 

[KARNAK]

Hello Carole, welcome to the forum 🙂. Diabetic amyotrophy or proximal diabetic neuropathy, it presents with abrupt onset, often unilateral severe pain in the anterior thigh, buttock or lower back followed by weakness and wasting in the thigh. I`m sorry you have this condition and would like to know what medication you are on, if you so wish to divulge. You can complain all you want we are here to help as much as we can a friendlier bunch you will not find. Blood glucose levels (BGL) are crucial in controlling this condition, you do not say what type of diabetes if any you have and how you come to be diagnosed with this problem. Look forward to hearing from you soon, kindest regards.

 

[Carole Reilly]

Hello Carole, welcome to the forum 🙂. Diabetic amyotrophy or proximal diabetic neuropathy, it presents with abrupt onset, often unilateral severe pain in the anterior thigh, buttock or lower back followed by weakness and wasting in the thigh. I`m sorry you have this condition and would like to know what medication you are on, if you so wish to divulge. You can complain all you want we are here to help as much as we can a friendlier bunch you will not find. Blood glucose levels (BGL) are crucial in controlling this condition, you do not say what type of diabetes if any you have and how you come to be diagnosed with this problem. Look forward to hearing from you soon, kindest regards.

Hi there, and thanks for your reply.
I am a post renal transplant of 23 years, and developed diabetes immediately following my transplant ( steroid induced) . I was on insulin for around 12 years, and following a 4 stone weight loss ( thanks to the suppprt of Slinming World) I managed to get off insulin, and now taken a variety of glucose lowering drugs. My current HBA1c is 68.
It has taken me a year to get diagnosed, during which I finally had to pay privately to see a neurologist ( the current nhs waiting list in my area, is 9 months). Following nerve conduction tests and a whole stream of MRI’s and blood works, diabetic amyotrophy appears to be the diagnosis.
I am on Butec patches 10mg, 200mg Pregabalin daily, and oxycodon 2.5mg/5mls for breakthrough pain.( amongst a large number of other meds for other complex medical conditions) The pain has been very difficult to control, and I still suffer pain constantly.
I am now unable to walk upstairs due to weakness in my legs, have difficulty rising to standing and suffer from regular falls. I am also unable to work due to this disabling condition ( I am a nurse). I have been told that the prognosis is very good, but will need vigorous physio therapy in order to walk properly again .
Does anyone else on here suffer from this condition?

 

[KARNAK]

Hi Carole, how are you today? Not very well I assume with the medication you are on. There are several members with a similar condition but most of them have posted many years ago. If you go to the search box and put in your condition it will show who has posted and when. Its all part of the Neuropathy syndrome but can be treated/relieved with good care from your Doctor and physio team. My own team comes under the heading of Community Neuro & Rehabilitation Team and I was referred to by my GP. and I am treated at home 3 days a week. This is mostly physio and slowly getting there, as far as I`m aware I do not suffer from Amyotrophy but quite severe DPN (Diabetic Peripheral Neuropathy) and went down hill quite rapidly over the last year but with medication and physio getting there gradually. I cannot emphasize how crucial it is to maintain proper BGL you need to test every day several times, treat it as an ambition in life, good control reaps good benefits. There is no easy way forward for you but with good advice and constant care you can beat 90% of your problem, the next step is to speak with your GP get a referral to physio who will then put you in the right direction for Neuro Rehab. This is not the same as seeing a Neurologist but a step up from physio, I think you need more advice and care and if you take control you will always be the winner. Take care you have the full support of this forum, keep us informed.