““What we are waiting for is not as important as what happens to us while we are waiting. Trust the process.”

Mandy Hale.

Back in March, I had my first appointment with a new neurologist since autumn 2019. That 2019 appointment had been with three neurologists! (My former neurologist sadly retired earlier in 2019 and that was a huge shame for me, although well deserved). I’ve since started to realise that neurologists are like buses; you either get three turn up or you wait ages because none arrive at all! Well, it was certainly the case that between October 2019 and March 2021, I was without the support of a neurologist.

When I finally got to see another new neurologist, in March, she stunned me by informing me that I was too young for her Parkinson’s caseload, as she usually works with the elderly end-stage cases, and she advised me that she would be referring me to a general neurologist because the general neurologist sees more young people. She then advised me of a plan to offer me a change to my medications regimen; to apomorphine injections several times per day.

Here’s a video about Parkinson’s:

She suggested that I would be re-assessed from scratch, for some of my symptoms appear not to be covered by the Parkinson’s definition. This neurologist suggested that I may either have Ideopathic Parkinson’s, as currently diagnosed, or that I have that plus a Parkinsonism or that I have a Parkinsonism instead of Ideopathic Parkinson’s. This has left me rather concerned, to say the least and since there is no neurologist to speak with (I was informed my next neurologist would see me within 3 months – two years; subject to availability!) it has left me rather frustrated that I now just have to sit with a considerable level of uncertainty.

Of course, having first seriously approached a doctor about the beginnings of what was clearly a neurological illness, back in the 1990’s, in my early twenties, I had the following twenty years prior to my diagnosis of Ideopathic (Young Onset) Parkinson’s to learn about all of the possibilities of what illness I may have. The closest other conditions that might have explained my symptoms, in 2017, were Multiple Sclerosis (MS) or Multiple System Atrophy (MSA). These two diseases would certainly be a worse option than Parkinson’s, even though Parkinson’s is a hideous disease. Both MS and MSA can develop very much faster than Ideopathic Parkinson’s.

Having had brain scans, MS was ruled out previously but, unpleasant as the idea is, it is not uncommon for people diagnosed with Ideopathic Parkinson’s to later face a re-diagnosis to a Parkinsonism such as MSA. Over the past few weeks, MSA has been on my mind for I have increasingly recognised that my symptoms might actually fit that diagnosis. Yet, there is much to support the diagnosis of Ideopathic Parkinson’s, too.

Here’s a video about MSA:

Are you in a situation in which your diagnosis is under reconsideration? Have you ever been mis-diagnosed? I had actually been mis-diagnosed with Fibromyalgia in 2015, even though I knew well that my illness was in the Parkinson’s family, so to speak. It was in 2017 that this was corrected and Ideopathic Parkinson’s was diagnosed. So, now I find myself in limbo as I await for a neurologist to be sourced, then for me to be referred to him/her/them . Then, it seems I will face a diagnostic review to either affirm my existing diagnosis or to add a Parkinsonism or change to a Parkinsonism.

To me, the only valid Parkinsonism diseases that would fit my symptoms would be either Lewy Body Dementia (LBD) or MSA. The prospect of dementia is something I really do not want to consider and the prospect for my disease to be MSA is really challenging. The progression of that particular disease is quite rapid and so my life expectancy would change. In 2017, with my Parkinson’s diagnosis came a life expectancy of 7 – 30 years. If my diagnosis is changed to MSA, that drops to 7 – 15 years; four of which have already elapsed.

I am calm and philosophical. The only thing that ever frustrates me is not knowing. I’m a person who can deal with anything, positive or negative, as long as I am fully furnished with all of the information. Being in this pace of limbo and uncertainty is where I meet my frustration and annoyance. Yes….’ Bah Humbug’! 🙂

For now, I can do nothing and so my waiting will continue. At some point, I will be allocated a neurologist and then the process of testing will begin. Again. At least this time I know it is possible, depending on the outcome, that they won’t actually have the luxury of twenty years to put me through tests, for I might not have even close to twenty years left! 🙂 (I can laugh, it’s ok. It’s good to find humnour in dark places).

My husband and I see far more that evidences my current diagnosis, however. I am less worried than this post may suggest but I wanted to share this, for many people face re-diagnosis or additional diagnosis as they progress along the journey of a degenerative neurological disease. This is an experience that should be more widely discussed.

If you find yourself in a similar situation, please feel free to comment below.