A few days ago I went to see the neurologist handling my 'case' and the visit was very short but somewhat productive - as was borne out in a letter I received from the neurologist today!
I must say that when I left the consultation the other day, I felt good about the visit - even though I got the usual 'you will not get better' and 'there is no cure or treatment for your condition'.
In the letter I got today, the neurologist writes about my in-co-ordination in general, variable shakiness in my hands and 'broad gait'.
The best part of the letter, for me, was the part at the very start that states (in bold) 'Diagnosis: Gait ataxia'.
Now! I know that at first glance that heading 'Diagnosis: Gait ataxia' may seem inconsequential or may even translate to some as an insignificance. However, to me, the diagnosis (although somewhat negative) is a great and wondrous thing. At last, after somewhere in the order of five years, I have a definite diagnosis. Previously the only description I had of my ataxia(s) was 'undiagnosed'.
It still remains that there is little that I can do other than medicate against my daily pains and exercise to help combat my ataxia(s). It is also still true that I have no solid cause regarding the the 'Gait ataxia' and my other coordination issues. Thing is, I now have a solid diagnoses for a large part of my health problems - and that makes me feel good!
Congrats! I understand how you must feel getting that diagnosis! I don't think Dr's quite know it won't get better! I think psychologically I think if we give in to the thought that we can't get better that it can hinder us allot. I'm glad that you don't! :0) Me either!!! :0) Even though it's really challenging at times! :0)
The fact that I have been given a more 'solid' diagnosis has been a great lift to me!
Although I have been told over the last five years or so that my condition is progressive and degenerative and that it is likely to not get better, I have not given in to any of that. Sure! My live and the way I live it has changed somewhat and I have had to adapt. Though, realistically speaking, who in this world does not ever have to change and adapt?
Hi Michael, getting a diagnosis does help. My daughters type of SCA is not diagnosed since there are only tests available for a few of the conditions that come under the SCA umbrella and she doesn't fit into any of them. The doctors say there's no point in knowing as it doesn't make any difference to the progression etc. but I would like to know whether it is hereditary from us and what type it is. It's a good thing that your doctor has given you a diagnosis. It sometimes feels more contained to have one even though you know it wont change anything.
Congrats Michael, on your diagnosis, especially if it makes you feel better! There's an innate human trait that makes us want to know about what's going on, even if there's no cure. My best to you... ;o)
There is, indeed, an innate human trait that makes us want to know all we can about what is going on - especially if it is something about ourselves! Luckily, 'no treatment' and 'no cure' do not equate to 'no hope'.
A GP once said to me "You know that we (professionals in the practice) are only GP's meaning General Practitioners." and that, I agreed, is true. The long and short of it is that a GP deals with general health. When faced with something more specialized, a GP will refer the patient to a specialist. That is not me making a bad comment about any GP though!
What can be frustrating for the patient (and the GP(s) dealing with that person) is when not even the specialists can or are willing to make something of a definite diagnosis. This, in my experience, happens when the specialist has got to gather more information about the patient and monitor the patient over time to make a better assessment. So! When the patient eventually gets a definite diagnosis it seems that a lot of the angst or frustration is removed.
A note on 'hereditary'; I have been told that 'technically' and from a medical definition of hereditary, my ataxia is not hereditary. However, my father has cerebellar ataxia and his father (my granddad) was bed ridden from around his mid 40's with something then undiagnosed but now thought to have been a form of ataxia. My dad started having balance and coordination issues in his mid 40's and my problems started to be really noticeable when I turned 40. The mind boggles at this not hereditary condition that just happens to show in Grandfather (seemingly), Farther and Son. Oh, well! Life goes on. :)
Thanks again for the replies, it always makes me feel good knowing how supportive and understanding folk on LWA are. Best wishes to all.