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Amyotrophy - hard to diagnose, harder to treat.

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D

DSmiles

New Member
Relationship to Diabetes
Type 1.5 LADA
Hello

This is my first foray into forums; but I’m hoping that there are other out there in this community who are battling Amyotrophy. There is a huge lack of awareness and understanding of this diabetes complication amongst the nhs and in particular GP network.

Despite best endeavours we (that is my diabetic nurse, dietician, physio, GP and myself) have been unable to find and resources within the nhs who can provide relevant experience and support. We did find one retired neurological consultant in Hull who had seen this condition before and was sympathetic but couldn’t provide any new input.

So, in short - is there anyone out there who has found any tangible support?

look forward to hearing your stories.
 
Hi and welcome.

I am so sorry to hear that you are suffering this worrying complication of diabetes. Unfortunately I know nothing about it other than what I just learned from searching the internet. I would imagine as with anything diabetes related, good BG control is the best starting point for improving or reducing the impact. I see that you are LADA. How long have you been diagnosed and which insulins do they have you on? Hopefully a basal/bolus system? How good is your control? Do you have any tech like Freestyle Libre to help you improve it.

Not sure if I know of any members with this complication but hopefully someone will come along with some helpful info.
 
Hi welcome to the forums.

Unfortunately there are many complications that we don't find out about until we suffer with them. The immediate response from consultants is to blame us for having poor BG control. This may be true but even with good control over a lot of years all those 1 day a year control disasters mount up and our bodies seem to remember those bad days.

Having suffered a heart attack I was amused as the consultant blamed me for smoking too much (I never have smoked),drinking too much (I am tee-total) etc. and then final said he had no idea why I had a heart attack! Life just bites you sometimes.

I hope someone will see your post and be able to give some insight to your complication.

Best wishes
 
Hi @DSmiles Sorry to hear about your complication. It must be hard if you can’t find an active neurologist who has experience of treating it. Have you been given any medication to try to help you?

If you use the Search facility here, top right, you can see there has been mention of amyotrophy here before but I don’t know how many of the respondents are active members. You could also try a more general search for proximal neuropathy or similar while you’re waiting for more replies here.
 
You could also try sending private messages to those people who posted about it in the threads above and see if you get any replies. If they are no longer active on the forum then they may not respond, but might be worth a go. If you are unable to access the private messaging facility @everydayupsanddowns should be able to sort it as I think new members have to be ratified by an administrator for that function.
 
Sorry to hear of your diagnosis with Amyotrophy @DSmiles

I’m sure you will have come across this already, but this 2016 article (intended for HCPs) has some detail, links for further reading/research, and also contacts for the author, which may give you a person to ask who may know of some UK-based specialists?

patient.info

Diabetic amyotrophy

Diabetic amyotrophy manifests as a rare disorder where individuals experience intense, throbbing, or scorching discomfort in their hip and thigh regions.
patient.info patient.info
 
adrian can you remember any point in your life where something affected your immune system? also information does suggest that the condition could improve but you will need to keep tight control of diabetes. finally if you are in pain then you need to discuss your options with your doctors.
like with anything it is a waiting game as to what improvements you will get so all you can do is take one day at a time.
 
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