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Gosport Nancy

No Longer Seeking a Diagnosis

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Busy
Gosport Nancy

Hi Everyone

 

I first asked a GP about my symptoms back in the late 80s and he told me he suspected a central nervous system disorder after doing the usual neurological tests GPs can do. He referred me to a neurologist.

 

The neurology appointment and consultation arrived early 1991 and he repeated the same tests the GP had done then said he was all for sending me for further investigations. He then asked me to wait in his side room while he took a look at my medical notes in case he missed something.

 

After 10 minutes or so he told me that after reading my notes he had decided that since all my symptoms were most likely due to mental health issues (anxiety because I was mum to 2 children with special needs),he felt further investigations weren't needed. I would no doubt get the same response now as I am currently caring for my husband who is terminally ill.

 

In the 30+years since, all of those symptoms have got a lot more noticeable and others have been added.My current GP knows about the new symptoms but I'm still know nearer getting a diagnosis than I was 30 years ago. 

 

I have had friends accuse me of malingering as I have no diagnosis (dumped friends now) and when I was in a coma following a cardiac arrest four years ago, hospital staff told my husband and my son on different occasions that they thought I was a hypochondriac. I can only assume that this is on my medical records as I hadn't talked to any staff at that point.

 

I am currently working from home as a writer and also run a bunch of on-line stores so it's not like I am just a lazy so and so.

I'm really posting to say that acceptance without fighting for a diagnosis has simplified my life so much and I am a much calmer and happier person for doing this. 

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Nick

Nancy,

 

That sounds OK,  Labels are just that, they don't really tell you what to do. 

An old piece I wrote on here might help

 

  • Love 1

Just another Warrior...........

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Busy
Gosport Nancy

@Nick This actually confirmed a lot about the stages of MS grief if you like.My journey really only ended up tripping me up when I got caught up in what other people were saying to me.

 

I remember back to times I looked at possible conventional treatments, read the longlist of reported effects.I decided early on to take the gentler route of acceptance for what is and to work with it.

 

My current issue is I am on a mental decline that is so frustrating.made even more poignant when thinking that my lovely man might have to watch me deteriorate while his health fails. 

 

Try as I might to live in the moment and not worry overmuch, I need to make plans for a future, whatever that might be.

 

 

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Procrastinating
Stumbler

@Gosport Nancy , we have to plan for the worst, whilst hoping for the best. 😉

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Busy
Gosport Nancy

@Stumbler Exactly that.My husband gets upset when I talk about likely futures (both my parents have/had early onset dementia in their 60s and I am now also in my 60s). He refuses to accept that at some point he could end up with being my carer as my current down turn in cognitive functioning becomes trickier to handle. I was assessed for dementia in my late 30's and my cognitive functioning was already starting to deteriorate back then.The cardiac arrest and coma in 2016 didn't exactly help matters either.

 

What I want for my husband is for him to get some help for himself so we can stay together but he just ignores the whole situation so my forward planning is becoming an impossible feat as I need him to engage with all of this.

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Procrastinating
Stumbler

@Gosport Nancy , I can empathise with your husband. "Live for the day, tomorrow will look after itself"!

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Busy
Gosport Nancy

@Stumbler Clearly tomorrow doesn't look after itself as I can't make plans since at some point it's likely I will know longer know who my husband is (my mother hasn't know any of her family members for at least a decade)

 

I actually know a lot about how dementia works and that there is lack of support out there without a diagnosis. I can't have the brain scan not appointment at the memory clinic my dementia nurse wants me to have as I am now too confused to travel alone

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