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Diabetic Amyotrophy

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.

Anna42

New Member
Relationship to Diabetes
Type 2
The search box on site didn't come up with anything for Diabetic Amyotrophy, so I thought I'd let you know what it is and my experience so far in having it! The symptoms are weight loss, muscle wasting, weakness, and extreme pain.

In August I woke with a pain in my hip. It wasn't too bad and I thought I'd pulled a muscle pushing the grandchildren on the swings. Over the following fortnight it got worse and went down my leg to my knee and foot. Classic signs of sciatica which I'd had before - so I went to an osteophath. There wasn't anything that needed manipulation, and I was given a massage and a list of exercises. However, the pain increased and was really bad. I couldn't sleep because of it and was only getting 2/3 hours a night - I spent the rest of the time walking around the house clutching a hot water bottle to my back. I contacted the GP again who prescribed anti depressants which are used extensively for nerve pain. These didn't work, and I was given Tramadol which did help but you can't take for long periods.

The pain was only just bearable. I also noticed that I'd started to lose weight; a couple of pounds a week. The GP still thought I had sciatica and referred me to physiotherapy who eventually sent me for an xray and MRI. The results showed slight disc degeneration but didn't account for the amount of pain, weight loss or the fact that I was now beginning to lose muscle in my legs. My quadricepes began to disappear.

I started to limp and found I couldn't lift my leg or bear weight so couldn't climb stairs properly. My knee started to give way and I began to fall over without warning. I felt sick all the time and couldn't eat; sometimes I'd throw up after a few mouthfulls. The pain was now truly awful especially in my knee, and I was reduced to moaning and tears quite often. The GP prescribed Pregabalin. This is a drug used for lots of things but especially neuropothy or nerve pain.

It was like a switch being turned on and within hours the sickness had gone and I could eat normally. I had lost 3 stone in 8 months and hoped this would now stop. The pain was reduced by about 80%.

To be honest, the GP was stumped for a diagnosis and although he knew I had neuropathy he didn't know which kind, so referred me to a neurologist who recognised my problem immediately and diagnosed Diabetic Amyotrophy. This is different from other neuropothies and is quite rare. They think it happened to me because I had untreated type 2 diabetes, which caused the nerves in my leg to become inflamed. It's a reaction to high blood sugar levels. (A number of blood tests in December, some 5 months later, included one for diabetes and showed a blood sugar level of 30, so I guess I'd been living with syrup in my veins for some time).

Weight loss, extreme pain, wasting of muscles, and weakness are the main characteristics of amyotrophy. However, the rather brilliant news which I found out only last week, is that it is recoverable from. It may take a couple of years and a lot of physio, but there's hope on the horizon and apparently the first thing to go will be the pain. Hooray.

I just wanted to let you know about amyotrophy and my experience of having it.
 
Oh my goodness... that sounds absolutely horrible for you! So glad it is something you can recover from. I must say I had never heard of it before, so you learn something every day. Thank you for sharing.
 
wow Anna that BG was really high, glad they found out what was wrong but sorry it happened and took so long you must of been in absolute agony.
 
Hi and welcome

That is rather a shocking story but fingers crossed it has a happy ending for you.

I am surprised a search of the forum didn't turn up any hits because I seem to remember a new member about a year ago going through a similar experience and came to the forum looking to compare notes with others suffering the same complication but as it is pretty rare it was a question of us learning a little from his experience rather than the other way around. I seem to remember he was trying to locate a neurologist who had specialist knowledge of the condition. I don't think he remained active on the forum after his initial post. Will see if I can find it.
 
Oh my goodness... that sounds absolutely horrible for you! So glad it is something you can recover from. I must say I had never heard of it before, so you learn something every day. Thank you for sharing.
Thanks Pattidevans! It is pretty awful if I'm honest, but I'm sure all will be well in the end!
 
wow Anna that BG was really high, glad they found out what was wrong but sorry it happened and took so long you must of been in absolute agony.
Still am if I'm honest! Hoping for better things though.
 
Hi and welcome

That is rather a shocking story but fingers crossed it has a happy ending for you.

I am surprised a search of the forum didn't turn up any hits because I seem to remember a new member about a year ago going through a similar experience and came to the forum looking to compare notes with others suffering the same complication but as it is pretty rare it was a question of us learning a little from his experience rather than the other way around. I seem to remember he was trying to locate a neurologist who had specialist knowledge of the condition. I don't think he remained active on the forum after his initial post. Will see if I can find it.
Thank you for looking. It is quite rare thankfully. I came here looking to see if anyone else had a shared experience too, but it's obviously a much rarer condition than I thought!!
 
Hello and welcome @Anna42

That sounds a really frightening and distressing experience for you to go through. Thank goodness you have some positive news about things improving.

These are the previous threads on the forum about amyotrophy, it doesn't come up very often but hopefully they will be of help to you. Best Wishes on your recovery.

 
Thank you Flower! That's very kind of you to go to all that trouble and I appreciate it. I'll follow the link and see if there's anything out there that might help.
 
The search box on site didn't come up with anything for Diabetic Amyotrophy, so I thought I'd let you know what it is and my experience so far in having it! The symptoms are weight loss, muscle wasting, weakness, and extreme pain.

In August I woke with a pain in my hip. It wasn't too bad and I thought I'd pulled a muscle pushing the grandchildren on the swings. Over the following fortnight it got worse and went down my leg to my knee and foot. Classic signs of sciatica which I'd had before - so I went to an osteophath. There wasn't anything that needed manipulation, and I was given a massage and a list of exercises. However, the pain increased and was really bad. I couldn't sleep because of it and was only getting 2/3 hours a night - I spent the rest of the time walking around the house clutching a hot water bottle to my back. I contacted the GP again who prescribed anti depressants which are used extensively for nerve pain. These didn't work, and I was given Tramadol which did help but you can't take for long periods.

The pain was only just bearable. I also noticed that I'd started to lose weight; a couple of pounds a week. The GP still thought I had sciatica and referred me to physiotherapy who eventually sent me for an xray and MRI. The results showed slight disc degeneration but didn't account for the amount of pain, weight loss or the fact that I was now beginning to lose muscle in my legs. My quadricepes began to disappear.

I started to limp and found I couldn't lift my leg or bear weight so couldn't climb stairs properly. My knee started to give way and I began to fall over without warning. I felt sick all the time and couldn't eat; sometimes I'd throw up after a few mouthfulls. The pain was now truly awful especially in my knee, and I was reduced to moaning and tears quite often. The GP prescribed Pregabalin. This is a drug used for lots of things but especially neuropothy or nerve pain.

It was like a switch being turned on and within hours the sickness had gone and I could eat normally. I had lost 3 stone in 8 months and hoped this would now stop. The pain was reduced by about 80%.

To be honest, the GP was stumped for a diagnosis and although he knew I had neuropathy he didn't know which kind, so referred me to a neurologist who recognised my problem immediately and diagnosed Diabetic Amyotrophy. This is different from other neuropothies and is quite rare. They think it happened to me because I had untreated type 2 diabetes, which caused the nerves in my leg to become inflamed. It's a reaction to high blood sugar levels. (A number of blood tests in December, some 5 months later, included one for diabetes and showed a blood sugar level of 30, so I guess I'd been living with syrup in my veins for some time).

Weight loss, extreme pain, wasting of muscles, and weakness are the main characteristics of amyotrophy. However, the rather brilliant news which I found out only last week, is that it is recoverable from. It may take a couple of years and a lot of physio, but there's hope on the horizon and apparently the first thing to go will be the pain. Hooray.

I just wanted to let you know about amyotrophy and my experience of having it.
lost two stone in weight in last few months from 12stone 4 to ten stone 5 diabetes possibly type 1 as my pancreas has stopped producing any insulin. fatigue, muscle wastage right leg wont work average sugar reading 27 to over 30. thank you great to put a name to it
 
lost two stone in weight in last few months from 12stone 4 to ten stone 5 diabetes possibly type 1 as my pancreas has stopped producing any insulin. fatigue, muscle wastage right leg wont work average sugar reading 27 to over 30. thank you great to put a name to it

Weight loss is one of the symptoms of undiagnosed T1, as is fatigue. Are you seeing your Dr about it?

Were you given other tests or checks to confirm the amyotrophy @Anna42 ?
 
Weight loss is one of the symptoms of undiagnosed T1, as is fatigue. Are you seeing your Dr about it?

Were you given other tests or checks to confirm the amyotrophy @Anna42 ?
diabetes at hospital still taking no notice of hi sugar -won't test me, won't give me an appointment, keep promising to write, never got in touch for telephone appointment, tired 24/7, using libra free style now they are trying to stop it. expect to die soon from this, feel so poorly.
 
diabetes at hospital still taking no notice of hi sugar -won't test me, won't give me an appointment, keep promising to write, never got in touch for telephone appointment, tired 24/7, using libra free style now they are trying to stop it. expect to die soon from this, feel so poorly.
So you're way over what our meters can read with any degree of accuracy and you feel like you're near death.

Get to A&E! They can at least measure some obvious things (like ketones) and (likely from just looking at you) prod the diabetes doctors to pay attention. Or some other department (if it's something else).
 
Keep us informed @crystalangels

If nothing else please do call NHS111, to ask their advice. But it does sound like you should be going to A&E to get checked.
 
I hope that you have been able to get some urgent help @crystalangels
Do let us know what progress you have made.
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
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