Difficulties of diagnosis…of anything!!

I know its been a while since I last wrote but it has been a very strange year… What I am focussing on today is how difficult is to diagnose any type of Dementia and/or cognitive dis-abilities, and how the GP/Doctors system of not being able to discussing co-morbidities in the same consultation may have a negative impact in diagnoses. As always these are my rambling thoughts only.

Of course COVID-19 has impacted on all of us, and I am no exception.  Fortunate enough not to have had it, obviously all of the hospital appointments surrounding whatever I have been living with has come to a complete standstill. Maybe though, that’s not a bad thing because you can get caught up in a cycle of appointments to Doctors and you somehow become a ‘patient’ with a diagnosis. With a ‘dis-ability’ a condition suddenly becomes a focus in your life, and how to live normal,  when you should be just living and ignoring the dis-ability, but that can seem impossible.  You seem to become accustomed to waiting till the next appointment comes along…

How hard is it though to totally ignore cognitive difficulties; short term memory problems, not being able to understand what is being said, not being able to focus on one person speaking in a room with even the slightest extraneous noise?  Are you able to ignore those things absolutely?  I think not.  Unfortunately there is always someone or something there to highlight them without realising it.  So it’s hard to ignore them and live without even a hint of any internal attention to them, to live without any distraction of a ‘dis-ability’.   I think of Dementia as a kind of shelf life which is dependent on a whole host of internal and external parameters the end result always not being happy ending.  

Where I left off when hospitals shut for everything other than emergencies and COVID-19 was having had appointments for this and that seemingly going round in circles, nobody quite understanding what was going on with me medically.  

The Eye Hospital: I have been going back and forth a year, having this test, then that test  at different hospitals resulting in a complete and utter mystery as to why I was having trouble with blank spots in my vision.  

The Memory Clinic:. Unfortunately, this service in my area is in complete disarray!  Staff leaving, no provision for younger people at all.  The premises unsuitable for anything other than being an old Vicarage that it used to be.  I have felt for a long time that my Alzheimers diagnosis needed to be looked at again, but was told by the psychiatric nurse “Once someone has a diagnosis there is no point in looking at it again”.

My GP: Constant appointments to my Doctor about my;

  • Fibromyalgia pain and decreased mobility is seen just as that, Fibromyalgia and decreased mobility. It’s recorded that I have Fibromyalgia so there is nothing they can do apart from listen.
  • Problem with swallowing and choking occasionally and was referred to a Neurologist.
  • Intermittent urinary incontinence – now that’s something that we often feel ashamed to talk about.  Urge incontinence for women appears to be acceptable because – ‘as you age, it’s normal‘.  Let me tell you it’s not normal! There is a difference in leaking a little, and leaking a bit more at random times, and unable to get to the toilet quick enough.  This dis-ability is not dismissed but sign posted to the Incontinance Nurse who can support me. No answers to why is this happening now?
  • My vision becoming a real problem but I’m already seeing a consultant at the Eye hospital.  
  • The exhaustion and constantly falling asleep
  • Being unbalanced and falling over, in fact becoming worried that your balance is so unstable it is a problem.  

Finally, I say to my Doctor “None of this makes sense, none of this is normal.  Why haven’t I progressed in eight years of Alzheimer’s disease (AD) diagnosis (however thankful I am for that), what is going on in my brain?”, and this is where it get’s interesting…

I don’t know if you have read before where I said that I felt it was wrong that Doctors can only focus on one symptom at a time, and not talk about co-morbidities?  Well, this is where it shows how important it is that ALL of what a person has been diagnosed with should be taken into account at some point during a consultation.  So instead of a Doctor telling you that if you have several different things going on that you want to talk about, to focus on one (or two) and make further appointments for the others, maybe they should listen to all, then say they would like to focus on one particular issue at a time.

My Ophthalmic Eye Consultant questioned my diagnosis of Dementia, and wanted to get in touch with the memory clinic.  My Doctor referred me to a Neurologist because of the mild problem I was having with swallowing and choking – she felt it was possibly neurological and referred me to get some tests done on this at the hospital, but then that has been on hold because of COVID-19, she also discussed my concerns about my Alzheimer’s diagnosis and was willing to refer me to a Professor of Neurology at the major teaching hospital who focuses on rare and hard to diagnose cognitive problems.   At the same time she organised for me to have an MRI scan of my brain.  Meanwhile the Psychiatrist at the memory clinic left but wrote to me saying ‘they would not follow up to discuss the results, until another person was in place but tentatively decided that I may have FTD – Frontotemporal Dementia’…..  You could not make this up!!!  They couldn’t be arsed to see me so just wrote to me with that.   I get an appointment with the Professor of Neurology but cannot go and see him because of the current situation, so, he phones me and I do a phone consultation which lasts half an hour and he is thorough.   Finally I get a letter from him with an appointment for September and also what it says is a complete shock.

I ‘may’ have a new diagnosis.  No dementia.  The thing that has progressed the most with me is the physical disability and pain.  The thing that I was diagnosed with at the same time, eight years ago when I was diagnosed with AD was fibromyalgia.  I was living on a narrowboat at the time and was in pain all over, my legs, arms, joints, and was more than once afraid of becoming more unstable as I walked along the narrow gunwale of my boat.  Climbing along lock gates was also beginning to worry me, I was feeling less agile than I had been but put it down to age.  I’ve had biomechanical physiotherapy and hydrotherapy for the pain and lack of mobility. Now, I shuffle a bit, I walk all over the place like I’m drunk.  I can barely walk round a supermarket without having to sit down.  I have pins and needles in my legs all the time and sometimes arms, and the pain…..  Ive always lived with some pain so just put up with it.  I won’t, or rarely take medication for it because I am happier with 24 hours of pain I can bear, rather than having less pain for a few hours followed by a horrendous ‘come down’ of it coming back.  I am not one for taking pills if I can help it and never have been.  So the letter following the phone consultation contains what he thinks it might be which is Extrapyramidal Disorder. Basically the definition is: A movement disorder caused by defects in the basal ganglia. The clinical manifestations include changes in the muscle tone, dyskinesia, and akinesia. Causes include vascular disorders, degenerative disorders, and antipsychotic drugs. Its similar to Parkinsons Disease. Definitely not drugs because I was not on any drugs when I was first diagnosed with Fibromyalgia or AD.  Soooo, again I’m not sure what to feel yet.  I know there is a cognitive disfunction element to it but am so desperate to get to the appointment to discuss everything in more depth.  However, at the point of writing the letter he had not seen my elusive MRI brain scan, so who knows what’ll happen when I get to see him.

I guess, it just goes to show that cognitive disabilities and are not cut and dried as to shunting them into a Dementia diagnosis.  I have always said I have felt a bit of a fraud when it comes to my Alzheimer’s because it wasn’t progressing as it should.  

Thanks for reading.