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Peripheral Neuropathy

03 Dec

Onset of type 1 diabetes

Back in the winter of 2003, one very cold night in a tin shed in Donnybrook, Western Australia, I suddenly awoke with a dry mouth and a terrible urge to drink water. This happened about three times that very night, with a very pressing trip to the toilet before another large drink of water. I didn’t know what was happening to me.

This pattern continued, night after night and throughout the day. My initial conclusion was that I felt thirsty because I had a dry mouth, and that all this water was making me go to the toilet all the time. I thought I had a dry mouth because my nose was always blocked, and I breathed through my mouth.

I lost weight rapidly, from about 90 Kgs to 75 in a few months. I was ecstatic! I had always struggled to lose weight, and all of a sudden it all came off without any effort on my part. In fact, I continued to have a very unbalanced diet, very unconcerned about nutrition or diets: no matter what I ate, my weight remained constant at 75 Kgs.

A few times I worried that this constant thirst and need to urinate were abnormal (I drunk and eliminated up to 5 litres a day!), but it never occurred to me that I had diabetes, and that I had it bad. I felt great!

Diagnosis

In July 2006, while working at home as a computer programmer, I started to get Repetitive Strain Injury in my fourth finger of the right hand (the finger that pushes left against the mouse). The second knuckle was extremely swollen and painful, and I decided to go see a doctor, something I hadn’t done for about 4 years. While I was at it, I chose to check my cholesterol, my blood glucose and a few other things that should be checked periodically.

As soon as the lab results were in, I received a call from the doctor, who expressed concerns that I may have diabetes, since my fasting blood glucose was abnormally high. I did the usual analysis to confirm such a diagnostic: HbA1c, the average concentration of glucose in the blood over the last 3 months. I can’t remember how high mine was, but it was way too high.

So the diagnosis was confirmed: I had diabetes, and it was of the type that requires insulin injections, constant monitoring and a drastic change of lifestyle.

I received the news with mixed feelings, but shock, horror, anger or bitterness were certainly not among them. I have an outlook on life, mainly due to my religious convictions, that helps me to look any new challenge as an opportunity for growth. I knew I had an unhealthy attitude and relationship towards food and health in general. I thought that this was a chance to educate myself and take control.

The new symptoms

Soon after the start of the insulin therapy, a series of very disturbing and painful symptoms appeared:

  • Excruciating, sharp lancing pain in the parotid glands whenever I salivated
  • Cold sweats and interminable shivers
  • Continuous bruise-type pain in the arms, shoulders, thighs, back, belly and hips
  • Sparodic sharp pains in the same areas
  • Hyper-sensitivity to the slightest changes in temperature
  • Difficulty in concentration
  • Affective symptoms: irritability, mild depression
  • Asthma-like symptoms, with very little relief given by Ventolin

This was very disturbing, especially since the nurses and doctors who were available to me, and who “trained” me to my newly found condition, expected me to feel a lot better after my blood glucose was brought back to normal. Their eyes sort of glazed over when I said I felt much worse, and they would generally ignore what I said and tell me to keep at it and I would feel a lot better.

None of them knew what I had. Even a diabetologist in Bunbury had no idea, and apparently didn’t even consider the possibility of diabetic neuropathy. Of course, I had no idea either, and nothing the doctors prescribed had ANY effect!

It was becoming difficult to eat, difficult to work, difficult to do anything. I felt helpless, completely unable to determine what was wrong with me, and unable to find help. I think that the affective symptoms were mostly a result of this helplessness.

First diagnosis of neuropathy

After about 5 months of agonizing uncertainty and helplessness, I finally found a medication which, strangely, completely erased ALL of the symptoms I described above: tramadol. This solution came after doctors tried a number of different pain-killers, and this was almost their last resort.

The relief was only partial though, because I was now completely dependent on a new medication, and I still didn’t know why I had these symptoms. I ventured into the obscure world of Internet self-diagnosis, and mislabelled my condition as “Sarcoidosis”, but I was completely off the mark.

About a month later I managed to see a neurologist in Perth, West Australia. He performed a clinical examination and announced that I had diabetic neuropathy. He was shocked that my diabetologist hadn’t even considered it, since it was rather common. To her defense, I have to say that neuropathy usually develops after many years of untreated diabetes (20-30 years). The damage to the nerves is very slow and gradual. However there can be additional factors which combine with the elevated blood glucose to damage the nervous system much more extensively in a much shorter period of time.

I was so ecstatic to finally know what was wrong with me (or so I thought) that I didn’t realise that this neurologist had only performed a very superficial examination (pricking my toes and fingers, testing reflexes with a hammer etc…) and hadn’t offered any suggestions for a cure other than: “The body doesn’t like sharp rises and drops in blood glucose. If you keep your glucose level stable, your nerves may heal over time and these symptoms may disappear.”

Second diagnosis

About a year later, this time in France, one of the doctors I saw was surprised that I was taking tramadol, and first suggested that I lower the amount I was taking, to reduce the risks of long-term dependence. I lowered it from 300mg a day to 200mg, without any noticeable problems. Just in case you’re wondering what happens if I stop taking it altogether, it’s quite simple: the symptoms all come back, one after the other!

A few weeks later I finally saw a neurologist who seems to know his field. After the initial clinical examination, he went on to perform some nerve conduction speed tests using electrodes, and an electromyography (EMG). It was far from comfortable (especially the large jolts!), but he obtained some results which he interpreted easily: he declared that I had a specific form of neuropathy. I don’t remember the exact diagnosis, but I will ask him next time I see him.

He told me to stop taking tramadol, which was not specific enough for my condition and could lead to dependence. Instead, he prescribed Lyrica. He also prescribed a number of blood tests, which I am yet to organise. They mostly explore different anti-bodies which may be attacking my nervous sytem. If nothing is found in these results, he said he would likely prescribe a lumbar puncture. Here’s a link to a video if you’re feeling brave.

After looking at these horrible websites, I wasn’t overly excited about the thought of having a huge needle inserted into my spine, but I knew it could be the answer to so many questions. Accordingly, I went to the hospital, and Dr Hinault himself performed the procedure. It was done in 5 minutes. The sensation was like a constant electric discharge in my lower back. Quite unpleasant, but not painful. I later learned that this was very similar in sensation to an epidural, so now I have at least some empathy for mothers giving birth 🙂

Unfortunately or not, the tests revealed nothing in my spinal fluid, so to this day I still don’t know what caused my neuropathy. The good news, however, is that after slowly taking less and less Lyrica, I have now stopped taking it entirely. I have nearly none of the symptoms I described above, except some light tremors in stressful situations. I often wonder if I have the condition at all anymore, I guess my nervous system must have slowly fixed itself. Isn’t the human body incredible?

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4 Comments

Posted by on December 3, 2009 in Life

 

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4 responses to “Peripheral Neuropathy

  1. Melissa Markham

    January 27, 2010 at 12:53 pm

    I have been perusing the web looking at stories regarding peripheral neuropathy and diabetes. I found your post very interesting. It certainly seems like they went around the barn and back again with you. I am glad you finally found a neurologist who knows what he is doing. Diabetes runs in my family and I worry about ending up with it.

     
  2. Nicolas Connault

    January 29, 2010 at 12:03 pm

    If you are worried about type 2 diabetes, it is mostly associated with lifestyle, so you can mostly prevent it by being active, avoiding saturated fats and keeping your blood pressure in check. If you’re worried about type 1, however, there’s not a lot you can do to avoid its onset, although it usually appears in childhood or early adulthood, and rarely later.

     
  3. Morningstar

    February 12, 2011 at 3:36 pm

    Having a lumbar puncture is why I never had an epidural. I had the lumbar puncture when I was 14. They stuck me over and over for over 30 minutes and it caused horrible, shooting pain. The doctor sounded alarmed and said, “It’s not in your legs, is it?” “YES!!!!” I decided no needles would enter my spine again ever.

    That is awesome that your got your neuropathy under control! Do you get cold after you eat, by chance? Happens to a friend of mine all the time.

     
  4. Nicolas Connault

    February 12, 2011 at 6:20 pm

    I was really blessed to have one of the top neurologists in France perform the procedure, he certainly acted as if he did this every day.

    I don’t have any neuropathy symptoms anymore. I don’t think I used to get cold after meals, but from what I understand neuropathy can manifest itself in many, many different ways, depending on which nerves are affected.

     

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