1998 was a year that felt like a decade to me. What did I learn?
1. Exploratory medical tests are often painful, uncomfortable and undignified.
I am injected with dye, hung from my feet, poked and prodded, turned and basted and scanned by every type of scanner – several times! I have an MRI scan under general anaesthetic, several lumbar punctures, endless nerve conduction tests (ouch!), more scans. I am relieved of enough blood to stock a blood bank, invaded and examined in every orifice, undergo muscle and facial biopsy, tests for all cancers, infections, HIV.
Why do you get counselling on how you would feel if you have HIV but not for any other diagnosis? Are other terminal / deteriorating / distressing illnesses less psychologically disturbing?
2. Neurology is a somewhat undeveloped science where a negative result does not necessarily mean a negative is proven and a clear diagnosis may not be apparent.
Stunningly, all the results of my tests come back negative or clear, though they did confirm blockages in nerve conduction and severe muscle weakness in my legs. I have no diagnosis despite being unable to stand and permanently confined to wheelchair. They say that this hardly ever happens – peachy!
3. My immune system is attacking me and causing my neurological problems.
My Consultant’s diagnosis by default is chronic inflamed poly-radiculopathy, being an inflammation of the nerve roots affecting my spine and head, cause unknown. They call this type of illness an autoimmune disorder.
4. Most autoimmune conditions are not curable but may be treatable.
Treatments for many such conditions are broadly the same and few in number. Complete recovery is not, generally, expected as an outcome of treatment; progressive deterioration is always expected. Relapses and remissions are commonplace. Burnout of the illness is possible but rare and may leave residual disability.
Treatments include (in order of toxic severity): IVIG (intra-venous immunoglobulin), plasma exchange, IV steroids and stronger immune suppressive drugs such as those used for cancer.
Essentially, all of these suppress your own immune system to stop it attacking itself in the hope that you will make some sort of recovery or at least slow down, or stop, the progression of symptoms.
It is impossible to predict what will happen to me. With no diagnosis, any treatment given is just an educated guess. Doctors hate guessing and hate giving treatment on the off chance that it will help. This does not leave me in a good place.
Despite causing horrible physical sickness, it seems that IVIG is starting to shape up as the drug of choice – it is cumulative and escalative, with no long-term side effects and can be repeated with frequency. Bring it on. And, they do.
5. All treatment options have unpalatable side effects.
Susceptibility to infection, allergic reaction, weight gain, acne rosacea, osteoporosis, constipation, diarrhoea, skin thinning, skin cancer, gut irritation, liver and kidney dysfunction, hair loss, hair growth, increased risk of other cancers…and on and on and on…
With no treatment: full body paralysis, blindness, retention of full mental faculty. Choice, or no choice?
6. Private health care gives you access to privacy, higher grade medical personnel, and speed of treatment. Providers of private health care do not like to cover serious long-term illness.
Dr W refers me to Prof. T who is a world expert on peripheral nerve illnesses. Prof T no longer works in the NHS – too old! Nurses in the luxurious private wing assure me that I would have received all the same treatment within the NHS – just not so quickly. I am in and out of hospital all year. My private health provider makes each admittance as difficult as possible.
7. Long term chronic illness can destroy the quality of the rest of your life and that of those who love you, if they can bear to stay with you.
Early in 1998, following treatment, I get a lot better. I am able to walk with crutches and I go back to work. Within two weeks, I deteriorate. I give up work again, thankfully not knowing that I would not go back.
I enter a whole new phase of my life where I constantly believe that things cannot get any worse… and, they do!
By the end of 1998, just before Christmas, I lost the use of my left hand and arm and, more alarmingly, also lost most of my vision. Prof T (aka God – my consultant) had flown off for a four week holiday, leaving no cover. After much hassle, I was admitted back to hospital for more treatment over Christmas.
EaZyD had a very merry “Yohji” Christmas on the wards and found time to get me a few nice pressies too! I was let out on Boxing Day but felt like I was living in a black hole – could not read, watch TV or use a computer. Then, I deteriorated further…