Hardened arteries

[Greensleeves]

Hi all

I had a TIA in September, temporarily lost vision in one eye.

It has taken going private to get some answers. Twice I was put off from having an MRI with the NHS.

I had an MRI/MRA of the head and neck with contrast 10 days ago.

A letter arrived from the neurologist this morning, all vessels and arteries clear, but white matter areas indicating hardening of the arteries .

Im going to now request some heart tests as nobody else will.

The neurologist recommends optimising vascular risk ( blood pressure, cholesterol,anti platelets therapy, lipid lowering, antihypertensive therapy).

I’m taking Aspirin and Famatodine , hoping to try another statin that doesn’t cause side effects.

We really do have to advocate for our own health and question everything.

The Neurologist has offered to see me again , I will have to do that as my only “vice” , has been stress , I have to understand everything.

My blood pressure is always high from white coat syndrome, but because of the anxiety of everything it goes up at home too .

The only thing I can improve is stress management, exercise ( hellish while trying to taper) blood pressure meds.

I seem to have a problem with anything vascular related even though they’re completely different issues .

xx

[PMRpro Ambassador]

I can recommend ezetimibe and bempedoic acid if you can't take statins!!! They are approved for use in the NHS.

By our ages most people have areas of white matter - did the report say it was excessive?

And amaurosis fugax (temporary loss of vision) can be due to GCA too. So beware that aspect of it.

[Greensleeves in reply to PMRpro]

Thank you PMRpro, they’re doing everything possible not to prescribe Ezetimimibe. I’m going to insist now, or ask the Neurologist to step in if needs be .

It doesn’t say excessive, only that white matter was the cause for Amaurosis Fugax . I was hoping for evidence of a lesion .

When the event happened I was sure it was GCA , but they’re certain it wasn’t ……due to my low inflammation markers . I did tell them nothing on earth would raise my ESR or CRP . Also no jaw claudification or scalp tenderness, although I haven’t been without a background headache since.

Thank you for your knowledge and support. I did read most people our age have areas of white matter , I want to check if there’s anything cardiac related going on . I realise there’s little I can do apart from slow any progression.

Something I noticed when my mother was ill was all the different diagnoses from neurologists . I’ve experienced the same , from Retinol migraine now this .

The neurologist has offered to see me again, I’ll do so and request cardiac tests in the new year.

Thank you xx

[PMRpro Ambassador in reply to Greensleeves]

I'm sure they are - costs more!!!

You have a LONG history of PMR, consistently low markers, amaurosis fugax and they ignore the elephant in the room. None so blind as those who do not wish to see!!

Sigh.

[Greensleeves in reply to PMRpro]

Exactly PMRpro , they won’t listen and have suddenly become experts on PMR and GCA . It’s frustrating to say the least , I only want to know what’s wrong .

Thank you xx

[Angelsmummy]

Stress is a killer isn’t it,you sound a worrier like me,Your need to put everything into boxes metaphorically isn’t a bad thing,knowledge is key when it comes to health.Too much of people telling us things and not explaining them properly is a nightmare isn’t it.,As PRO,said,be vigilant with that eye issue,maybe go and see a good ophthalmologist,go with your gut feeling on things eh?Hope all goes well for you.xx😜🎄🎄

[Greensleeves in reply to Angelsmummy]

Thank you, yes I am a worrier , I wasn’t until experiencing certain events and now think of every possible scenario, usually the worst.

It drives me up the wall , this is our body and health but nothing is explained . If you answer back you’re in danger of treating them without respect.

I will keep trying until I know. thank you for your kindness and understanding. xx 😜 🎄 🎄

I’ve never used that emoji before but it’s my current face 😘

[Angelsmummy in reply to Greensleeves]

Bless your heart,we are what we are,some are strong,take everything in their stride,others like us are worriers and have to dissect everything and still come up with the wrong answers.Regarding answering them back,up until I joined the forum I accepted everything that I was told,I knew nothing so put up with it,not anymore zi can’t tell you,I have learnt a hell of a lot from THE WISE ONES on here and now fight my corner,and do you know what,the “ experts” are now listening to me and can actually hold a 2 way conversation with me.Please keep going on the forum,that is what it is here for,As I keep saying to others,you will get all the help,advice you need and a sympathetic ear if needed,and if you are a really good girl you might get a taste of my warped sense of humour!😱Dont bottle anything up,it only festers and magnifies,unload on here,plenty of good people to help ok..Hugs to you.xxx🌼😜🎄

[Greensleeves in reply to Angelsmummy]

Thanks so much for your lovely, empathetic and caring words.

Everything you’ve said is true . I read this forum almost daily and trust the wisdom and knowledge of the wise one’s , PMRpro and DL is absolute for me.

I read rather than post , only posting if I’m worried or need further advice.

I’m so glad the experts listen to you now,about time too .

Since losing my mum , although respecting the training the medics have done, I don’t respect many of them. It’s quite a privilege to come across a good one. I do tell them too I’m very angry with how my mum was treated.

I’m looking forward to your warped sense of humour, I do laugh at inappropriate time and love a dry sense of humour.

You are absolutely right in all you’ve said and I thank you for that.

Big hugs and best wishes to you .

Take care 😊🎄🎄💃🏽 xxx

[Angelsmummy in reply to Greensleeves]

I use the one eye emoji because I lost one eye to GCA,just a bit of fun!xx🤣🤣🎄🎄😜

[Greensleeves in reply to Angelsmummy]

Oh my goodness I’m so sorry I had no idea . You can be funny about your eye , but I wouldn’t have responded like that had I known.

These doctors don’t understand the chances they take even dismissing GCA ,

How long ago did that happen to you,

Bless you, lovely brave and funny soul . 😘❤️🎄🎄 xxx

[Angelsmummy in reply to Greensleeves]

Please don’t feel bad ,I like DL just get on with it now.Yeh,it was hard in the beginning,just shrugged off by a pig of a consultant when I was rushed into hospital with the sight loss through GCA.I won’t tell you what I called him,a four letter word that no lady( not that I have ever been that) or man should ever use!I made him feel an absolute …..in front of a trainee he was trying to impress.The RNIB reported him,have never seen him since!🤣🤣🤣I don’t mind funniness,got to take the humour where we can eh?It happened 2 years ago on the sixth of this month,but ill for nearly a year before it finally got diagnosed.Never mind,got to get on with it like many others,always somebody worse off,just want to meet the bugxxx!!love to you,xxx😜🎄

[Greensleeves in reply to Angelsmummy]

It’s an absolute disgusting and disgraceful travesty they let it go untreated. Im glad you showed him up in front of his underlings and he got reported. It’s the arrogance of them.

I’m so sorry i would have called him that too . I called the consultant who started EOL on my mum an arrogant **** and would have punched him if my heart wasn’t broken . I haven’t finished with him yet.

I remember my nan saying she knew women did use that dreadful word as she’d seen it written on the wall in a women’s public toilet 🤭.

This isn’t a great time for memories for you. You’re handling it with humour and dignity but must feel different inside. It’s a life changing experience. I’ve always been in total awe with DL , she’s quite wonderful . Been through so much but works her way through,

I wish I had a magic wand, I so do .

I’m sure you’re still beautiful you certainly have a beautiful soul .

Sending you love and joy and hope something special happens on the 6th to make the memory of that horrible day a good day . 😘❤️🎄🎄 xxx

[Angelsmummy in reply to Greensleeves]

Aaaaw,such lovely words ,Thankyou.So sorry to hear about your dear mum,awful for you and the bad memories never leave do they?Never been beautiful,but always had the boys chasing me( probably because I pick pocketed their coats!) Only joking!🤣🤣The sixth won’t upset me,just another day,too many good things to think about as Xmas looms nearer.Just got back from having hair trimmed and eye brows waxed.Couldn’t have had them waxed when on high doses of Pred,would have had no skin left but glad to say no trips to A and E so skin must be getting tougher now I am on a lower dose!Life goes on,cannot change the past,just got to get on as best we can and count our blessings I guess.You stay as well as you can As for the consultant who upset you do your stuff if he deserves it,people on pedestals CAN be pushed off!xxx🎄🎄🎄🤬🤬😜

[Greensleeves in reply to Angelsmummy]

You’re so welcome, I bet the boys would still be chasing you even without your pick pocketing habits.

I’m glad your skin is toughening up now as you’re reducing the Pred .

Having eyebrows waxed successfully is a good sign and helps you feel better too .

My dear mum had undiagnosed PMR and GCA , I can’t be sure she wasn’t blind at the end,

We certainly do have to count our blessings, it’s hard not to feel bitter sometimes, it’s human nature. I haven’t got the same strength my mum had.

As far as pushing people off pedestals when it’s deserved, it feels good.

You look after yourself too, know you’re amazing and a beautiful soul,

Sending love and hugs 🤗 🎄🎄 xxx

[Angelsmummy in reply to Greensleeves]

Oh,your poor mum,how awful,life can be cruel sometimes,guess these life experiences make or break us.Please don’t think I am always positive,I get a fair few bad days ,wallow in a bit of self pity then up I go again.Nice to have a chat on here with our family as I call it.Support each other and a bit of light handed banter goes a long way to lift the mood on bad days.As for the eyebrows,was beginning to look like Dennis Healey!SO glad to have them done and pleased to say the Elvis sideburns,and little goatish beard is vanishing because of lower pred.PMRprogives me a chuckle when she refers to the luxurious black beard she developed.In fact I was telling my hairdresser today ( sorry PMRpro!) and they said how wonderful that we can laugh about the idiosyncrasies of Pred.Was hoping my beard would stay until Xmas so I could get a part time job as Santa!🤶 Look after yourself eh,and remember we are all in the same boat and need each other!xxx🎄🎄🤶🎄🎄😜

[Greensleeves]

You’re right life can be very unfair and cruel , we have to grab the good times with both hands. You really wouldn’t be human if you didn’t feel days of bitterness and anger, I feel very angry for you. I think you’re marvellous for picking yourself back up again, some people can’t do that, go into the black hole of depression,

I hope you’ve claimed against that incompetent doctor.

Some days when the sun shines life can feel exhilarating despite our pains and experiences. We must remember that when we have down days.

The side effects from Pred can be trying, but I’m thankful for it, it’s a bittersweet wonder ,

I fortunately didn’t get a black beard or sideburns but when I had my eye brows waxed , the girl asked me if I wanted my face doing too .

I asked why? She showed me in a magnified mirror, it was covered in downy hair,

I said yes please then asked my kids why they hadn’t told me. 😂.

So you can’t be Santa or Elvis now , instead you’ll be one of Santa’s little helpers .

Yep we do all need each other and how would we ever manage without this group and the fantastic people here .

Take care and keep in touch.

Love and hugs clean shaven one .

😊🎄🎄 xxx

[Angelsmummy in reply to Greensleeves]

Oh how I laughed when I read” love and hugs clean shaven one!🤣🤣🤣🤣Nearly as much asPMRpros beard!( sorry again)So you had a furry face??Good for keeping the face warm in winter!There was no way I could have claimed at the Drs surgery,I saw FOUR doctors even went private and the optician and no bugxxx picked it up!If only one of them had suggested a blood test MAYBE I would still have my eye,but it’s gone,even if I sued and won,and no doubt I wouldn’t,what good is money and would I have needed all the stress of litigation?Have enough worry with my husbands health .But guess who does not get Xmas cards from me any more?I miss driving terribly,especially being rural,having to rely on daughter or taxis.Only getting out once a week,,not good but we have a 3/4 acre plot of garden so I lose myself out there ,though not as much as I would like to.My animals are a source of joy,as is my great grandson.He makes my life worth living.Having a tired out day today,finished wrapping up gifts,so am going to chill until dinner time.Hope you are well,and as you say,the Pred is a double edged sword.Its a bit like my daughter,can’t live with it,but can’t do without it!xx🤬🤬🎄🤣😜 Hugs to you G.x

[Greensleeves in reply to Angelsmummy]

Ah I’ve only just seen your response . Bless you , they were all negligent and can’t make it right but it’s unforgivable . I am so sad and sorry. 😔.

I’m sorry your husband isn’t well too .

Can’t you drive now, it’s a huge shame you can’t.

Your garden sounds magnificent and the love of your great grandson.

Children bring us so much joy , I love my grandchildren and my adult children. I’ve been watching my son flying home from America during the night, it’ll be lovely when he’s home .

Id have a menagerie of animals if I could, I used to spend more time in the stables with my horses than I did at home when I was a youngster . Now it’s dogs , loyal and lovely .

I am debating whether to go to the hairdressers or not before Christmas but think I’d better check my face doesn’t need waxing first 🤣.

It’s a strange time for many of us . I’m seeing the neurologist next week so will arrange further tests for the new year .

I was going to comment to the lady who has a uti but PMRpro has covered it . I love her and DL .

I know exactly what you mean about double edged sword 😆.

I do love your humour it certainly makes me smile. 🤭

Hugs and love to you 🥰😍 xxx

[Angelsmummy in reply to Greensleeves]

Hi Greensleeves,hope you are well?Lovely that you are tracking your son coming home for Xmas.2 weeks today,where has the year gone?Shouldn’t worry about your face needing waxing,leave it until the spring ,it will keep your face warm!😂😂😂🧔‍♀️🧔‍♀️Finished the Xmas shopping now,all gifts wrapped and nearly finished the food side.Another 5 hours shopping yesterday,am paying for it now and will for about 3 days.Got pains where I never thought pain could get.Treating myself to a couple of quiet hours on sofa with one of my dogs,OH gone out with son in law ,so PEACE!.,Hope your neurologist appointment goes ok?Nothing serious I hope..My great grandson is such a joy in reply to your saying how much love you have for your family,I think I am a better grandparent than I was a mother,probably more chilled,plus the bonus of giving them back!Or maybe wiser?…….So you have dogs?Such a comfort aren’t they?My GSD picks up on every one of my emotions,and if I am sad,he looks sad.Anyway,I really hope you have a wonderful Xmas with your family ,and hope that maybe we will all be able to enjoy it relatively pain free eh?love and hugs,xxx🎁🧚🏼‍♀️🐕‍🦺🦃🤶🎄😜🎁🎁