MRI Brain Scan - What Next?

[WaltzingMathilda]

Hello everyone, this is my first post in this forum. Four years ago, as an extremely fit and strong woman of 58, I suddenly became seriously ill with a mystery illness which affected my whole body. I was extremely stiff and had nerve pains throughout my body. Several tests were done by neurologists and rheumatologists, but apart from some slow nerve test results in my legs nothing else showed up in tests. I'm periodically ill every so often with severe numbness, headaches and other weird symptoms. This prompted an immunologist to refer me to the National Amyloidosis Centre to exclude Periodic Fever Syndrome. Over the last two years, I've noticed a loss of mental clarity, particularly when I'm very ill. I requested an MRI brain scan and recently had the results. The radiologist compared a scan from 2012 and noted my parietal gyri had shrunk. He suggested this was indicative of degenerative disease. I have not yet had anyone discuss the results with me and so thought I'd ask some basic questions here. I am NOT asking anyone to suggest what I may have caused the brain shrinkage in my case. I have asked to be referred to a neurologist to investigate the possibility of a degenerative brain disease.

Is there a standard procedure for investigating results that indicate there may be a degenerative brain disease present in a patient with brain shrinkage?
What sorts of time limits are involved in waiting for investigations to exclude/confirm a diagnosis?

Thank you. Any insights into current procedures of investigation are appreciated.

 

[karaokePete]

Hello @WaltzingMathilda, welcome to the forum.

I'm sure waiting times vary around the country. My wife took a couple of years to get a final diagnosis but you seem to have already moved part way through the system and I hope you get an answer quickly as the waiting must cause stress.

There is an AS Factsheet about the diagnosis and in the hope that it may be of some help you can read it if you click on this link https://www.alzheimers.org.uk/media/966

 

[WaltzingMathilda]

Thank you karaokePete. I found the information useful in that it was vague - it prompted me to answer the questions it raised in the absence of more detailed information. It seems that many medical conditions are difficult to diagnose and rely on clinical evaluation, and that the early stages of dementia must be equally difficult to determine because someone's symptoms could be related to another condition. I'm taking it then that forms of dementia cannot be decided with certainty until the effects on the individual are clearly obvious...

I'm in the position where I live alone and will have to rely on myself to notice an further decline in mental functions. At this stage I only have an indication of a 'likely' degenerative disease. I think I can only make plans to deal with a possible situation that may occur sometime in the next few years. I found the information (on this site) about the progression of dementia useful. I'll be making changes in lifestyle and should the recent shrinkage in my brain be caused by a condition other than dementia, I shall not have lost out.