Results of MRI Scan

Margaret W

Registered User
Apr 28, 2007
3,720
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North Derbyshire
Hi all

Some of you may recall that my mum died in November, of pneumonia, but had suffered from Alzeimers for a few years.

I also suffered a stroke (TIA - very minor, no further symptoms since), 4 days before she died. I had various tests, and the MRI scan has come back that I have some brain deterioration. The consultant's letter says it is "non-specific" and no change is needed in my medication, but he is referring me to a Neurologist.

You can imagine that I am frightened to death. My husband read the letter and said "Oh, he obviously isn't worried" and went to bed. I am here sweating and scared. Quite obviously I am thinking "dementia". Maybe I am over-reacting. But I start to think about changes in my actions. I have been a lecturer for 40 years. Yes, I have started to be less dynamic in my speech, sometimes have to pause to think of what I am wanting to say. Also noticed that my usually impeccable touch-typing needs a quick check (Terry Pratchett said that was the first thing he noticed - his ability to touch type faltered).

Oh well, if I succumb to Alzheimer's disease I know where to come for help. I suppose I won't be alone in having a parent with Alzheimers and getting it myself. It is just a bit scary at age 57. I am over-reacting I hope.

Love to all

Margaret
 

Margarita

Registered User
Feb 17, 2006
10,824
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london
It is just a bit scary at age 57. I am over-reacting I hope

So sorry to read that . You must be in shock after reading that . May be your husband reacted like that , because its just a way of coping emotional.
 

jenniferpa

Registered User
Jun 27, 2006
39,446
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Dear Margaret

Well no one will blame you for "over reacting" if that's what it is. I don't think any of us would be happy to hear the words "deterioration" even if it is "non specific". How long will it take for you to see the neurologist do you think ?
 

Bookworm

Registered User
Jan 30, 2009
2,581
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Co. Derry
Trying to reassure

Hello Margaret - I guess nothing will settle you until you get more information from the doctors. However i found some good information on the internet - that when someone has a TIA their MRI may be completely normal or may show some changes - some deterioration. The whole brain attack service is geared up to keep the MRI as normal as possible i.e. prevent further damage. The changes you mentioned e.g. with typing may have come from the TIA?

Being referred to a neurologist isn't the usual next thing for dementia...?

You are on medication to decrease chance of further TIA - maybe antocoagulants - letter says no need to change.....

I think the letter is all packed up with "medic speak" and should not have been sent - but I think what you wrote of it can be taken as reassurance that the deterioration found sometime over the last 4 months is not marked or significant - just "some" and not enough to warrant change in medications......

Does this help a little Margaret - is this something you can hang on to until you get to see a doctor. If you are going to be upset all weekend, see an out of hours GP with the report in hand - i hope s/he would say similar things to help you settle over this.

I totally understand why you would feel alarmed at first reading - but as you re-read it - can you see some of my alternative perceptions? I hope so, xox
 

Tender Face

Account Closed
Mar 14, 2006
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NW England
Dear Margaret ..... who could blame you for an over-reaction? Your TIA aside, you have been under tremendous stress, are trying to cope with your grief, tired, anxious, not sleeping well .... shall I go on? You know enough from here these could all be reasons for not being quite as 'sharp' as you might like .... although I will confess I read far too much into symptoms these days either for myself or for people around me....(perhaps an anxiety state in itself as part of loss/grief etc?)

You are bound to be desperately worried, and that in itself won't be helping ..... I very much endorse Sue's wise words ...... and add to that my love and thoughts, Karen, x
 

Margaret W

Registered User
Apr 28, 2007
3,720
0
North Derbyshire
Hi all

Yes, thanks for your reassurance. I suppose I am being over-sensitive. I have no idea Jennifer how long the appointment will take. I have private insurance, but to be honest have been so impressed with the NHS treatment so far, am happy to be in their hands. After all, it doesn't sound as if I am likely to drop dead in the next few months, so I will wait.

I just feel the last 2 years have been such **** - and much worse for others - and I find the only people who understand are here on a website, people I have never met. My "best friend's" retort to anything I say is "yeah, tell me about it" as if she has experienced the same. Not helpful.

Sorry, folks, but you ain't got rid of me yet!

Love and thanks

Margaret
 

Grannie G

Volunteer Moderator
Apr 3, 2006
72,394
0
Kent
Dear Margaret

So it wasn`t a very severe migraine after all.

I`m sorry the consultant decided to tell you the news in a letter. That in itself is unusual, results are normally given during an appointment. Perhaps there is some logic in thinking, because it was sent by letter, the news may not be as bad as it sounds.

I hope you get the neurologist`s appointment as quickly as possible so you can ask your questions. I also hope you see a sympathetic neurologist who will understand your fears.

Till then, try not to test yourself too much. You know tension and anxiety will make it worse.

We will all be rooting for you. Please keep posting. There is nearly always someone here.

Love xx
 

Vonny

Registered User
Feb 3, 2009
4,577
0
Telford
Dear Margaret, Have only just seen this thread and can only reiterate what others have said.

I'd be in panic, it's a terrifying thought after all and when you become so immersed in the disease it's only natural to identify symptoms in your own behaviour, symptoms which are actually nothing to do with the disease but through stress, worry, grief etc.

Although it's awkward that you've received the results through the post because you can't ask the questions you want to, it does make it look more hopeful. Despite my misgivings about the medical profession I find it hard to believe they use the post to deliver bad news. This sounds more like belt and braces to me, they've found something which they'd like to follow up just to be sure.

Hope that appointment for the neurologist comes through very soon.

Hugs and best wishes

Vonny xxx
 

KenC

Registered User
Mar 24, 2006
913
0
Co Durham
Dear Margaret

Many people have been devastated when they thought that they had an illness like this. But it is worth remembering that there are times when a consultant can not find an answer or give one until they are completely sure.
I was told originally by my consultant, that a diagnosis can not be confirmed until the post mortem. That did not help matters, but I was then told to go out and enjoy myself while I could, and try to hold on to the fact that it may be something else. I turned to the Society and I have not looked back as they gave use all the help and support that they could. These are true friends.

That was the only way that I managed to cope with the diagnosis in the end, because I had a consultant who was caring and understanding. Perhaps she was too caring, but I felt that the advise was coming from a friend and not a consultant.

Good luck and I hope that you do not have to wait too long for an appointment.

Best Wishes

Ken
 

living in hope

Registered User
Dec 14, 2008
552
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yorkshire
Hi Margaret
Can understand why you would worry, hopefully you will get reasurrance from the neurologist. Try to stay positive, would send a hug, but I'm not good on computers and dont know how to do it.
Lorraine
 

Margaret W

Registered User
Apr 28, 2007
3,720
0
North Derbyshire
Letter today tells me that they are unable to book me an appointment with said consultant at the moment because there is a backlog, so they will get back to me.

Had an interesting experience Thursday and Friday. Phone went, and an automated message said they were from the hospital booking system and would I please confirm my date of birth. I put the phone down. It happened again a couple of hours later, and I put the phone down again. Friday an actual person rang asking for my date of birth, and I said I was not happy to give such personal information over the phone. He pointed out that he was from the private company employed by the hospital to carry out this reminder of appointments. I said that would be fine if the hospital had told me I would be getting such a phone call, but they didn't, and I did not recognise his telephone number as being connected to the hospital (or even connected to the automated service that had rung me the previous day), so I was not giving my date of birth to him or anything else. I asked what he wanted it for, and he said to confirm that he was speaking to the right person, so I said Do you have anything more to say to me other than to remind me of my appointment on Monday? and he said no, so I said that is fine then, I will be there.

If genuine, the service is great. The appointment was made 3 months ago and I bet lots of patients forget. But I am not giving out any details to someone I have no knowledge of.

Do people agree? Have you experienced this yourselves?

Margaret
 

Tender Face

Account Closed
Mar 14, 2006
5,379
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NW England
I am 1000000% behind you, Margaret ... it may well have been genuine, but why chance it? Hospitals have the most ridiclous systems these days designed to eliminate all hope of human contact and caring (imagine my mother or yours even 5 years ago coping with a 'touch screen' check-in!!!!:eek:) and out-sourcing basic administration is just one of them.

But in a world that is concerned about identity theft some practises are bizarre? I trust as an alternative to refusing to give your date of birth you weren't asked for the three-digit security code on the back of your Chip n' Pin? :rolleyes:

It's frightening that in health and social care environments these systems and practices are so ill-thought out for the people who need them, rather than for the (cost) benefit of those that run them ...... :mad:

Karen, x
 

Cl13

Registered User
Feb 19, 2009
775
0
Cumbria uk
Hi Margaret, years ago my aunt used to laugh at her self all the time, at her own memory, if she said your name it would always be, "mary jane silvi margaret diane oh for crying out loud you know I mean Lynn", for years every one in our family who has forgoten a name or lost track in conversation has always be called " Auntie Winnie "
In our family five people had dementia before they died and my great uncle had Parkinsons as well as dementia, all of them Auntie Winnie's sibling's, guess what, Aunti Winnie wasn't one of them, she had a terrible memory for donkeys years but lived a long and happy life, she did finish her life in a care home because that was what she wanted, she had nursed her husband and father in law for years and refused to be "a burden on any of you young ones" and in her own wise words, " never worry till you've got somthing to worry about" I sincerly hope you wont have anything seriously wrong with you, by4now Love Lynn (((Hugs)))
 

BeckyJan

Registered User
Nov 28, 2005
18,972
0
Derbyshire
Hello Margaret:

Sorry to hear you need to see the consultant at all but at least it should ease your mind a little. Although there is no urgency, you will be relieved to get it done.

Whenever I have had these doubtful calls I usually ask for the number to ring back with a short explanation for the caution.

I agree about NHS especially for a neurologist - the one who saw David privately years ago was pretty useless.

Good luck. Jan
 

Margarita

Registered User
Feb 17, 2006
10,824
0
london
I would also agree that you did the right thing in not giving your date of birth.

I have had some dodgy phone calls from people asking my date of birth, I have not made any hospital appointment. I do not even ring the number back, because I have been told that some places want you to ring back, because somehow you end up paying for a very high rate call.
Only number I trust is the 0845 numbers .

Wishing you all the with appointment on Monday , let us know how it all went .