Person with ME


My relationship with ME is a long one, it goes back to 1982, when I first became ill with a 'flu-like' illness, but I wasn't diagnosed with ME until 1987.

My story is similar to that of most ME sufferers I've met over the years: lack of interest shown by doctors, ridiculed by so-called 'specialists', told it's 'all in my head' etc etc.  Eventually I decided seeking help from the medical profession was a waste of time and steered clear of doctors for a number of years.

By the early-mid 90's the illness had progressed to the point where I was housebound. Then, for some inexplicable reason, my health improved slightly and I was able to become more 'active': i.e. totter around the garden occasionally. 

Because my story is so long I want to concentrate on the last 5 years or so.

I had suffered neurological symptoms for a number of years but by 2003 they had reached the point where I couldn't ignore them any longer. I decided to go to the doctor. By great good fortune I took the first appointment available and saw a GP new to the practice.

I told her my story, we discussed ME and she said she neither believed nor disbelieved in the illness. She was more interested in the patient than a 'tag', she said. But for the first time since my diagnosis I had found a doctor who actually listened to me.

The end result of that appointment was a quick check of various reflexes which resulted in a referral to a neurologist. And the end result of that referral was an MRI and a lumbar puncture.

The MRI showed plaques in my brain of the type caused by MS but the lumbar puncture was negative for MS. The neurologist decided I had 'mild migraine' and discharged me. The GP, however, decided the MRI findings were significant and suspected I had MS.

I was stuck in that position for a couple of years, with a diagnosis of suspected MS. I knew I didn't have MS. Then the same GP referred me to another neuro for more tests.

The second neuro disagreed with the GP regarding the suspected MS, did more tests, noticed something on my skin below my tight eye and suggested I see my GP to have my cholesterol checked. This I did.

While taking blood for my cholesterol level she decided to also check my sugar levels. And that changed everything for me. It was discovered I had type 2 Diabetes. Suddenly I had a 'real' illness and the docs stopped treating me as a 'nutter'. It was as though they suddenly thought, "we missed the diabetes, what else have we missed?" So more tests.

My neurological symptoms continued to worsen but still no answer could be found, then one day, my hands went into spasm and my legs stopped working. Couldn't move them. This lasted for 20 minutes then function returned to my hands and legs.

Another  trip to the GP, who by this time was becoming increasingly frustrated by the lack of answers, and, almost in desperation, she did more tests and decided, at the last second, to test my calcium levels. Bingo.

I got a phone call at home a couple of days after the blood was taken. I was told to get to the local surgery asap: my calcium and magnesium levels were dangerously low. Magnesium regulates our heartbeat, our muscles need it in order to function correctly as does our CNS and PNS. If magnesium levels fall low enough it disrupts the heartbeat to the point where  it can be fatal. Prior to the discovery of my low magnesium levels, I had been hospitalised a number of times for erratic heartbeat, chest pains etc.

I was rapidly referred to an endocrinologist, he saw me in a matter of days as an outpatient, and more test followed. That was 2 years ago.

My current situation is this. I have been tested for every illness that causes low magnesium and calcium, all  the test came back negative. They have no idea why my magnesium, calcium, vitamin D, potassium and now a host of other vitamin and mineral levels are also consistently low.

I have attempted to put forward ME as a possible cause for these low levels but, basically, the docs don't want to know.

For them, there has to be a 'real illness' for my test results. However, because of my test results, they no longer tell me my illness is in my head, they just won't accept ME as the cause. So, for now, the docs just say they don't know what's wrong. One doc went so far as to say "You have a syndrome we don't understand."

On the plus side, I'm getting treatment now, the first time I've had any treatment for my symptoms since I was diagnosed in 1987. Life has improved.

I'm not 'cured' by any means but I am better than I was. My magnesium levels etc haven't improved as they  should have with the medication, they're still low but not dangerously so. But all of my symptoms are less severe than they were and providing I manage my illness properly, I can be more active.

The point of all this? Just to say, in case someone reading this really needs to hear it, there can be light at the end of the tunnel.

I've been dismissed, ridiculed, had so called medical professional try to humiliate me. I've had friends and family turn away from me. I've felt alone, been alone. I've felt depression, frustration, despair and anger at the way I've been treated over many years. And I've seen how the attitude of the medical profession changes completely when one of their hallowed tests comes back with a 'positive' result.

All it took for me was the great good fortune of finding one doctor who listened to her instincts, that I was genuinely physically ill, and who persevered in trying to find the cause of that illness regardless of how elusive.

To repeat, I'm not cured. I'm just not as ill as I was.

This is a very abridged version of my 26 years since first falling ill and the 21 years since I was given the ME diagnosis. Writing this, I'm simply trying to say I've gone from despair and depression to finally having some hope again for a meaningful future. And all because one doctor decided to listen to me.