VoxVenti ::

I’m generation boomer and for years I have been told that my cholesterol and blood sugar levels has been a bit high. I did not experienced any problems and exercised frequently so, no problem not an issue. A few years ago I got cardiac arrest when being on long haul bike ride. A scary moment but it ended well. I got an acute stent operation, medication and insight diet coaching. Life went on and cholesterol and blood sugar levels became within the acceptable boundaries.

20 month ago a was a longer walk in the neighborhood, started to feel a bit tired and just a couple of hundred meters from home I tripped when going down for a short stair. I sprain the left foot quite badly but made it home. Felt that I need to rest so I laid down on the bed for a couple of hours and started to fell a pain in my left thigh.
The pain did not go away and I discovered that I could not control my thigh muscles in the left leg. If trying to lean on the left leg when being slightly bent the leg collapse, resulting in several falls. When laying on the floor I could not lift the left leg of the floor for more that a couple seconds. I also had significant numbness in my left thigh.

I contacted the my house doctor and got in contact with few institutions looking at various possible reasons, stroke, back issue, nerve issue, etc.
Yes, it could be established that nerve signals to the left leg was not going through as they should.

After some weeks I got in contact with an engagerad nerve clinic. They came up with the qualified guess; you have diabetes and you is like to experienced a mononeuropath complication or more precise, diabetes amyotrophy.

Glad that someone could put a finger on the problem. Started to google on the topic.

One of the first articles on the topic that I found was a short crispy description on WebMD written by Hope Cristol.

Spot On.

• Diabetes type 2 (or type 1)
• Men +50 years are more like to get it.
• Intense pain in your hip and thigh or buttock.
• Asymmetrical neuropathy, with acute to subacute onset.
• Diagnosis for this condition is usually done through a process of elimination.

Outlook

Felt a bit relieved to know what it was, but did not reflect too much over the implications.

• The condition frequently will improve with time and the body will heal itself.
• It may take a year to start getting better, and 2 years until you recover. But…it can linger for up to 3 years.
• Pain recovered first, typically within 1 year, followed by improved strength and, to a lesser extent, recovery of the knee reflex.

Unluck?

• Diabetic amyotrophy affects just 1% of adults with diabetes. So given the statistics odds was in my favor, so I consider myself to be unlucky. Luck is when you beat the odds.
• Deaths per 100,000 population: 31.0 caused by diabetes.
• Life calculator says that I have 75 % chance to live beyond 78. Lifetime expectancy 85. I can live with these odds.

Takeaway

• - The first weeks was tumbling. Toke a while for the brain to learn that leaning on the left leg going downwards was a no-no, it resulted in many falls.
• - In the beginning the left leg was strong and I could walk on flat ground fairly ok, but quite quickly that also became a bit of struggle.
• - Over the next 10 month things became worse. The leg got weaker, the muscle control did not improve. Had a very hard time doing recommended physo exercises.
• - The pain in the thigh and around the knee was tangible! It was a sort of numb feeling in the thigh. For the first 5 month it affected the sleep, and also the mood, considerably . I got gabapentin to
  dull the pain. Most of the time the feeling was that it did not helped very much.
• - After 12 month I stopped taking gabapentin and started to to pick up physo exercises, occasionally. But if doing anything other than very light training, the pain was there the day after. At about this time I was also able to get back on my bike (indoors) could just sit and not riding standing.
• - Now after 20 month I do not have any pain. I still have a numb feeling in the left thigh, but it is gradual getting better. The muscle control is much better but still it is not fully recovered. I can ride my bike indoors and outdoors fairly unhindered, even if I have lost a lot of my previous strength.

Diabetic Amyotrophy should not be taken lightly. For me it has been a challenging time for sure. Dealing with the physical disability, not been able to hike, bicycle etc has been hardest for me. Also the recovery time 2-3 years are is not life-affirming! But knowing the condition frequently will improve with time gives hope.