Though I am known on some forums for my 'walls of text', I will try to keep this as short as possible!
I would like to talk about progression regarding my diagnosis and invite you all to share your experience of progression on your own 'cases'. Obviously, there is no pressure or requirement for anyone to actually share progress experiences but I do hope that in sharing, we may be able to help others - especially those new to ataxia and LWA.
Some of you will know that I have been having my 'condition' assessed for around four years now. I have had many MRI scans, bloods tested for genetic / heredity reasons and sessions with my GP, physiotherapists and neurologists. I found out about my ataxia by accident when a doctor wrote 'ataxia' on a medical certificate I was submitting to the 'authorities' regarding my health. In general, my ataxia is getting worse and I have been told (neurologist) that my ataxia will not get better - it is progressive and degenerative.
Over the last four years, I have progressed from having a medical problem (or group of problems) that where initially unexplained to now knowing I have (a form of) ataxia, I have been assessed for and had discounted multiple sclerosis (MS) and I have been told that my ataxia is not hereditary or genetically passed on - even though it seems I have the same condition as my father (he was just recently told he has a form of ataxia) and my grandfather had very similar problems as my father and me!
Further to all this, I have found out a lot about ataxia(s) from online sources. Mainly this site (LWA) and Ataxia UK have helped with good information, genuinely helpful articles and questions and answers and a good social 'vibe'. I have no specific links regarding medical opinions or research regarding ataxia but have read lots online about such. I would say though that any looking online for answers to be careful about what is read / seen online as there are some misleading articles out there!
Most recently, I have had some news that has a possible bearing on my condition and although it can be seen as negative, I am taking it as a possible positive! My father went for a neurology session and was told that the neurology team has looked at my records in comparison with his and other family records we provided and other family members medical records that were made available (with permissions such as I granted for sharing my records). Now, I cannot draw any facts relating directly to me from this, but dad has been told that his condition is suspected (almost definite) 'cerebella ataxia' and he should say this is the condition he has. Further to that my father was told that my grandfather likely had the same condition - though there were no means to diagnose this in his lifetime. Also, I have to mention these findings to my neurologist when I see him in January. My neurologist is part of the same team helping my father and I used to see the neurologist my father sees now. Bad news? Good news? Progress at least and that is good.
So! I have got some progress in knowing about my condition from various sources. The thing is, it has been a long journey so far. It can seem frustrating when diagnosis or information seem to be far off or when it seems that getting information about or making progress with ataxia seems to be drawn out or hitting 'dead ends'. It can take a long time to get any solid advice or help or make progress regarding ataxia - whether you have ataxia or are related to or care for someone with ataxia. I think it is always important to remember though that help is available and progress can be made.
I hope that by sharing our experiences about progress that we can show that, as much as it can sometimes seem that the future for people with ataxia (ataxians?) is bleak, there is help and advice 'out there' and positive progress to be made. Yes there are times of negativity but we should not lose hope or sight of the positive.
Thank you for reading this. I hope you can all find positive progression.