Exploring Options

It is almost the end of April 2013 and I went to see my GP with my list of symptoms all affecting the left hand side of my body. I told her I thought I had Parkinson’s disease (PD). She did not agree. Although she was reluctant I insisted she told me her opinion. She suspected multiple sclerosis (MS). I boldly told her she was wrong (*see below) - my symptoms simply don’t fit (I have done my research) but we both agreed that I needed to see a neurologist.

(*since having a child with down syndrome I have learned to question and query everything the medical professionals tell me and be as informed as I can be so that I can argue my case and fight for what we need.)

Sharing my fears

I told my husband my fears. He was dumbstruck and hoped I was wrong. I didn’t say anything to my children at this stage. I told my sisters and sister-in-law and brothers but got the impression they think I am presuming the worst (glass half empty person) and over-reacting. Besides absolutely no one in our family has ever had Parkinson’s so they think it’s unlikely.

The appointment came through for June 18th - record quick time. In the meantime I also had an appointment for a brain scan due to the initial concern it might be a tumour. I know from what I have read that Parkinson’s doesn’t show up on a standard scan – only something called a DAT scan.

The day of the appointment

The day of the appointment with the neurologist arrived. My husband asked if I wanted him to come with me. I decided against that for several reasons:

• My husband hates hospitals and from the moment he sets foot in one he is on edge – that isn’t going to help me.
• I am likely to be far more emotional if he is with me and I want to remain as in control as possible and glean as much information as can.

So off I trotted to meet Dr X (for the purposes of this blog!) I produced my excel spreadsheet (that surprised him) showing my symptoms and the order in which they appeared and the timeframe.

He asked if I had lost my sense of smell recently (I had not**) and asked me whether I had vivid dreams – I replied that I have always dreamed vividly since being a young child.

(**Loss of sense of smell is often quoted as one of the first symptoms of Parkinson's but this is not my experience. Likewise it is thought that if a person has vivid dreams they may be pre-disposed to getting Parkinson’s. As with all things these issues do not apply to everyone and diagnosis is achieved by looking at the presence of a number of symptoms and factors attributable to Parkinson’s disease.)

Confirming the diagnosis

Dr X asked me to walk up and down the room a few times. Then to tap first one foot on the floor as fast as I could, then the other. It was noticeable that my left foot could not tap as rapidly as my right. He asked me to tap my middle finger and thumb together on both hands as fast as I could and again it was obvious that my left hand was slower. He asked if I had any thoughts as to what was wrong with me. I told him that my GP thought I had MS but I believe I have PD. He announced that I was correct (oh whoopee do I get a prize??!!)

He added "if you had to make a choice of which one to have you would choose PD" - that was presumably meant to make me feel better – but it didn’t. I cynically wondered if, when he is diagnosing MS – he says to the MS patient "you are better off having MS than PD." Frankly nothing would surprise me.

I asked him how sure he is of his diagnosis and he replied "100 percent." He added that he can identify a person with PD at 40 paces (weird thing to boast about). I asked him If I should have a DAT scan - he responded that this would be an absolute waste of time and money since there was no doubt in his mind that I had PD. I later discovered that this was not the best answer as a lot of information can be gleaned from a DAT scan besides confirming a diagnosis.

Prescribed levodopa

Dr X then started writing out a prescription for levodopa. I risked annoying him and mentioned that my understanding - from what I had read - is that once you start taking levodopa you have about 10 years before the disease catches up and overtakes and the medication becomes ineffective. Hence there is a school of thought which says that the longer you can defer taking the strong meds, the longer you defer the 10 year countdown.

He told me not to spend my time worrying about what may or may not happen in 10 years time. He added that there may be a cure for PD in 10 years and conversely, I may go out from here and get run over by a bus! And on that cheery note, I left his office, clutching my prescription and quietly wondering if I could change my consultant! I came away from that meeting with some interesting new facts:

• By the time symptoms start to show, you have probably had PD for 10 years or more
• It is not an old person’s disease, diagnosis in the younger population is significantly increasing
• No one knows what causes the disease, but statistics show that if you are a smoker you are unlikely to get Parkinson's! (gosh an upside to smoking, who’d have thought!)
• There is no cure
• The medication only masks the symptoms of the loss of dopamine, it does not replace the dopamine

I collected the medication but decided not to take them, not just yet ...