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?