Diabetic amyotrophy

[Lynk62]

Hi

I have Diabetic Amyotrophy - it took 10 months to diagnose in my left leg and 14 months in just as my left was starting to recover it started in my right.

Neuropathy have signed me back to my GP who has no experience of it, I recently saw a diabetic consultant who has only seen 3 cases, despite being ready to retire and he thinks I should be back at the neurology department - my GP has written to them, but don't hold your breath.

I tried alsorts, but now realise that most of the "experts" switch off once they hear the word diabetic and don't pick up the amyotrophy part or have never heard of it.

Has anyone out there been done a similar path? Any words of wisdom gratefully received, after 18 months or so and quick becoming house bound I'm beginning to tear my hair out - still got a sense of humour though - just.

 

[Flower]

Hello and welcome @Lynk62 , glad you've joined us 🙂

I'm sorry you are having problems with amyotrophy and being sent between a neurologist and your gp. I haven't any experience of that but if you type amyotrophy into the search box at the top right of the page there are a number of threads about it. https://forum.diabetes.org.uk/boards/search/30829386/?q=amyotrophy&o=relevance&c[node]=2

 

[Lynk62]

Thank you - I'm new to the boards and I'm only just finding my way around - there are a fair few out there - I'll start following them up.

Thanks again

Lyn

 

[KARNAK]

Welcome to the forum @Lynk62, keep in touch and let us know how you are doing.🙂

 

[Lynk62]

Hi Ted,

Thanks for your support.

Can I ask you about the Gabapentin?

I keep seeing it mentioned, but more as an alternative to either amytriptilnie or Tramadol, but my GP just changes the subject - does it have bad side effects - I have people asking why I'm not on it, but it's not being prescribed.

I appreciate that the answer is to go to the GP again, but it takes a couple of weeks to get an appointment so I'd like to do my research before hand and be prepared.

Thanks

Lyn

 

[mikeyB]

I've taken Gabapentin in the past, though not for amyotrophy. I didn't get any serious side effects, slight dopiness that soon passed. Same with Tramodol, which I hardly ever use. I dropped Gabapentin when I discovered CBD oil 15 or 20%. usually only available online. No side effects at all.

It's probably not safe to take in combination with Tramadol, you may well get very sleepy.

 

[KARNAK]

Hello Lyn sorry its late getting back to you, as @mikeyB says I have had no serious side effects. I have very painful Neuropathy in both feet 24/7, if I forget to take them my lower legs and feet soon let me know. I take them in conjunction with Duloxetine which also helps. My feet are checked every six weeks at the Podiatric dept. of the hospital.

 

[Lynk62]

Thanks for your replies - the occupational therapist I saw the other day asked about medication and was surprised I was not on Gabapentin so I'm going to ask again next time I'm at the GPs and won't let them change the subject this time.

Still going down hill with my right leg I'm just waiting on a wheelchair so I can get on with the excersizes Physio gave me without then being too weak to get anywhere for the next hour.

My friend liken me to a rechargeable battery limited power and you have to be careful to use it on the right thing!

How is everyone else doing - more good days than bad - on the up or still so variable that you feel at the bottom of the dip and waiting for the upturn?

When I do get to see the neurologist again I will quiz them on the information they have and suggest they handout at least a sheet of "useful" information to anyone they diagnose with amyotrophy.

Thanks again everyone I don't feel as if I quite as alone in all this now

 

[Lynk62]

Good news - not - still a very disconnected affair.

My GP reffered me back to neurology saying my symptoms had spread and were not getting any better - my appointment is 26th March!

I've now been prescribed Pregabalin I got a printout of my prescription, as you do, and noticed it was on there so I've ordered it and hopefully will have it next week and I've booked a phonecall with my GP to findout how it might react with the Tramadol and over the counter pain killers.

I applied for PIP arrived in a wheelchair at the assessment as I knew I couldn't do the long hospital corridors - about a bus length at the moment and my battery is on empty and the shakes start. It's been refused as apparently I can walk between 50 and 200 meters if aided - yep 2 people carrying me either side.

Onwards and upwards, or at least sideways, backwards not an option.

 

[Lynk62]

Mikey B - I've just sent off for some CBD oil 20% so fingers crossed when that arrives.

Karnak - I've not heard of duloxetine, but thanks for the info on the sleepy side effects - I'm sleepy 12 hours a day at the moment as it is, with toilet breaks , any more and my hedgehog side would kick in and hibernation would start!

Got lots of good information from DarrenType2 too.

Many thanks guys