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Type 2 journey update

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Type2darren

Active Member
Relationship to Diabetes
Type 2
hi guys

Diagnosed January
14 stone
Hab1c 971000 mg metformin x1 per day
High blood pressure Ramapril
High cholesterol statin
Weak left leg and stinging thigh pregabalin and various
Feeling soooo unwell

Totally changed the diet
High protein
Loads veg and salad
Good fats
Zero bad stuff.. alcohol sweets stuff take a ways etc
Reduced carbs... learning more about the balance of amounts from the forum

April
12 stone
Hab1c 75
Blood pressure dropping
Cholesterol dropping
Feeling bit better
Diagnosed diabetic amyoptrophy .. lower back legs etc
Neuropathy consultant told me to google it!
Doctor did not know much about it.. I asked to see a specialist .. told no need.. drop BG etc
Diabetic nurse knew more about love island than neuropathy!

But..

3 weeks ago my feet and hands started feeling iffy.. buzzing tingling etc bit of aches n pains in my calves..
peripheral neuropathy? I thought I would have this at the start not as my BG was dropping?

Still feeling drained but focused on the diet 100%

September for blood tests

This journey is longer than I thought!

Advice on the forum is amazing

Thank you
 
Well done on your weight loss and lowering your Hba1c. Totally agree this forum is a very valuable resource.
 
Yes, well done. 🙂
 
Thank you

But

It’s difficult when the work put in has not sorted me out!

This amyoptrophy thing is weird.. my lower body seems to be suffering not getting better

I’m seeing musculoskeletal fellow next week to see if I can get more information as to what it is and how it heals
Not much concrete data from the NHS about it and the web seems to be very vague

High BG .. damaged nerves etc I need more help

Ideas?

Darren
 
Geebus - bad luck with the amyoptrophy, but Dr Google says it gets better over time with good BG control. I guess it will take some time. Your April HbA1c of 75 was getting a lot better but still pretty high - you want to get it below say 50, at any rate, and you're probably on the way to that, so stick with it!

Are you self-testing BG? I'd really recommend it, whatever yr doc says. At your early stage of the D-journey and particularly while you're trying to get BG down quickly to resolve the amyoptrophy, I wouldn't want to have to wait months for an HbA1c test to see how I'm doing, and self-testing will let you work out what foods are doing exactly what to yr BG.

Also, if you're getting some new neuropathy symptoms now, I'd say go see yr doc about them. But I think sometimes these can be a transient thing which happens when yr BG is falling, so fingers crossed!

All the best.
 
Yes
I have sensation in my feet
It comes and goes
Worse at night
This proximal amyotrophy thing.. I’m considering paying to see a neurologist or the guy who tested me..he diagnosed me.. and may as well said..crack on lad all yours..google it..

When BG drops I understand the body goes through changes and feelings etc but nobody has advised me on anything I’m getting knowledge from the forum

It’s time to exercise too..
Next steps for helping with rehabilitation
I feel so weak though
 
To be honest it’s been a poor show from the NHS
I paid for my own mri scan
I paid for my own consultation of the mri scan results
I was going to pay for my own nerve conductor tests as recommended by the mri consultant but the NHS fellow was embarrassed so much he pushed it through
Now I have a diagnosis but no real plan.. NHS next to discuss findings.. I’m betting he Google’s it!
 
Type2darren said:
To be honest it’s been a poor show from the NHS
I paid for my own mri scan
I paid for my own consultation of the mri scan results
I was going to pay for my own nerve conductor tests as recommended by the mri consultant but the NHS fellow was embarrassed so much he pushed it through
Now I have a diagnosis but no real plan.. NHS next to discuss findings.. I’m betting he Google’s it!
Click to expand...

This amyotrophy seems to have a zillion different name. FWIW, this is the best thing I find on a quick dig: https://emedicine.medscape.com/article/1935459-overview

According to that, the general prognosis is for it to get better over 12-24 months:

Good functional recovery within 12-24 months is expected in 60% of patients with diabetic lumbosacral plexopathy [one of the zillion names], although mild weakness, discomfort, and stiffness often persist for years. Occasional relapses can occur.

That sounds like a *long* time, no doubt. It sounds like you really should be getting more support than just being told to Google it:

The patient should be educated in the importance of good glycemic control in conjunction with proper diet and exercise. [25] During rehabilitation, in order to improve functional recovery, the patient should be taught exercises to regain strength in the affected muscle groups.

Neurologic recovery is slow for patients with diabetic lumbosacral plexopathy. A physical therapist (PT) can assist in improving a patient's functional mobility (eg, transfers, ambulation). The PT instructs the patient in the use of assistive devices when necessary. A therapeutic exercise and range-of-motion program supervised by the PT is helpful in maintaining and improving lower extremity prime-mover muscle function and avoiding major lower extremity joint contractures.

These patients may derive further benefit from a course of outpatient physical therapy, achieving their maximum potential in terms of functional mobility and lower extremity strength.

The article talks about a bunch of different medication possibilities, mostly for symptom relief and some which I recognise as things I've seen prescribed for more common forms of neuropathy.

Anyway, it looks to me like you really should be banging on the table to get some expert help with this. I guess a problem is that it's a pretty rare condition.

Good luck!
 
Can I add that when you damage nerves whether from diabetic neuropathy or dropping a paving slab on your fingers, if you haven't actually 'killed' the nerve(s) and you treat it so they start recovering - that hurts as much and randomly as when you start killing em. It's therefore important when you have pain from em to try and continue keeping that bit of you moving.
 
Oh..
Forgot to mention

Muscle twitches in mainly my calves?
Like ripples under the skin!
Come and go..
Is this the healing nerves as BG drops?
Weird
 
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