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Angel Oliver
06-13-2011, 04:22 PM
As you know ive been going to the eye hospital to remove via operations the cholestrol on the outside of my eyes.Well the last one seems to have removed them the best,but you can see them a little,but makeup can hide that.At the same time they were checking on the 'blind spots' i developed for no reason.Turns out im blind in both eyes on the perifaral and the consultant told me today i have had a mini stroke.
Now hahahahahaaha can you imagine me telling my own doctor this lol.He didnt believe id had a blood clot on the lung so this should be fun.Pleurisy at christmas and all the times i told him i couldnt see and i was numb.....nothing.
Thing is,at some point he is going to have to actually LISTEN and take me serious.How much more do i have to go through before he realises im actually telling the truth and NOT making these symptoms up. From you have lupus ...to you dont have lupus...to i think you always thought you had lupus when you didnt....erm nope.....the rheumi said i had that.
Doctors hey....god complex comes to mind! Only if they would sit and just listen then join the dots together.Wuld help me a whole lot....instead of the stress thta goes with all what im going through.Ahhhhhhhhhh there...feel better already hahahahaha.

Also,John said to thank you all for caring for him and your prayers during the loss of his Mum.Its been a sad time. Also,my friends mum was told by 4 doctors she needed physio as she was having problems walking.Turns out she has lung and brain cancer.She had a massive fit yesterday and was rushed to hospital,so many prayers are again needed.Not looking good and is a massive shock....shes so active usually. Lets hope though she gets out of hospital.Thank you.xx

love
Amanda:)xxxx

Peridot20_Gem
06-13-2011, 04:29 PM
Hello Amanda,

I've had strokes and they're linked to Lupus sometimes mine was and never knew it, your doctor needs it putting in writing from the specialist who looked at your eyes.
I mean by what your saying he's taking the P, he should be taking your more seriously and to have clots and pleurisy how much more evidence does he need.

Oh i hope the stroke as'nt affected you to badly and keep we updated please mate as you am going through the wars and back.

((Hugs & Kisses your way Amanda)) xxxxxxxxx

Angel Oliver
06-13-2011, 04:32 PM
Yes i may need to do that actually and ask him for a letter.I may call tmrw and ask for one. No im alright.But makes me mad when it happens ive told him and i was fobbed off...go away little hypo...hahahahaha...what goes round and all that lol.I just want some peace..or be sick with people believing me.I tell you ive so much better things to do than make up an illness lol.You take care.xxxxxx

Peridot20_Gem
06-13-2011, 04:46 PM
Amanda,

Sometimes doctor's talk to you like your thick in the head been there mate but get a letter off that specialist and tell him the reasons why as your own doctor does'nt believe you and if he's true to his word with his diagnosis then he should do one straight away.

I'm glad the strokes no hit you to bad then mate but you don't need all this boat load of rubbish ontop.

You takecare mate. xxxxxx

Nonna
06-13-2011, 04:48 PM
Hey Amanda, welcome to the club of mini strokes. I've had about a dozen sofar. No discernable damage. Mine is organic not lupus related. Hope John is doing well; give him a hug for me.

Watch yourself through, mini's lead to major; at least that's what they tell me

hugs Toni

tgal
06-13-2011, 04:50 PM
Oh Amanda I am so sorry for all that you are going through now. I wish there was something that I could do to make things better for you. Those doctors can be so irritating and you have gone through too much! I am here if you ever need a place to vent!

steve.b
06-13-2011, 06:05 PM
hi amanda, thinking of you, john and mum.

kim,l
06-13-2011, 07:22 PM
dear amanda i am sorry you are going through this stephen my husband had stroke 2 years ago luckily it only affected one of his arms and he has limp please take care wish you and family all my love kim l

Gizmo
06-13-2011, 07:39 PM
Amanda,
It sounds like the UK's national healthcare system doesn't connect your medical records by computer? That's crazy! SO sorry you are going through all of this. Hopefully the new diagnosis will force your GP to pay attention. If not, can you change doctors?

BonusMom
06-13-2011, 09:25 PM
Oh Amanda, I'm so sorry to hear this. You've had such a difficult time with inadequate doctors. For once, I'd like to see you get a competent doctor who diagnosis and treats you well.

Please take good care of yourself, love John well and remember to stop and smell the roses.

Peridot20_Gem
06-14-2011, 03:51 AM
Amanda,
It sounds like the UK's national healthcare system doesn't connect your medical records by computer? That's crazy! SO sorry you are going through all of this. Hopefully the new diagnosis will force your GP to pay attention. If not, can you change doctors?Gizmo,

The uk national healthcare does connect your medical records for the hospital's only but refering GP'S which is madness they don't, they have to have specialist letters, get your head around that one mate because it's pure madness to me.

magistramarla
06-14-2011, 10:12 AM
Amanda,
It is a shame that your doc has ignored what seems obvious to others for so long. I hope that he actually pays attention to this diagnosis. Will he see the report about your mini-stroke? Hopefully, he'll believe what the other docs report.
Here in the US, it's hit or miss for the docs to talk or listen to each other. Some are great about it, like the ones that I used to have. The rheumy that I have now seems to ignore any information that I bring her from another doc. I don't think that she believes anything that she doesn't diagnose herself.
Arrogant docs are everywhere.
Take good care of yourself, Amanda, and demand that they pay attention to those strokes!
Hugs,
Marla

SandyR
06-14-2011, 11:59 AM
thank God you are ok! Was the specialist able to say if this was a recent event? I hope your PCP starts listening and acting on your best health before he kills you with neglect. (((prayers))) (((hugs)))

Peridot20_Gem
06-14-2011, 12:19 PM
Hi Amanda,

How you feeling today mate and did you manage to speak to the specialist about a letter? xxx

Angel Oliver
06-15-2011, 06:03 AM
Wow do you know you all help me so much..just by replying,so thank you so much. Ive left 2 messages so far for the specialists secretary so i can ask her to get him to call me. Because he said it like i already knew i was processing what he said and yet again didnt ask the questions what i now want answering lol. So i didnt ask when it happened.But ive had so many episodes of numbness and that was my face an left leg which i was dragging around like a lead weight.But back then the doctor said i was depressed HAHAHAHAHAHAHA idiot! That same doctor shouted at me saying STOP CALLING IT M.E YOU DONT HAVE BRAIN INVOLVEMENT! Erm well you never checked you Nimrod....i do!!
Ive made an appointment with my gp for the 27th so hopefully i get a letter mentioning the blindspots in my eyes and the words MINI STROKE! Like you all say when are they ever going to take me serious.I worry that it'll be too late,it scares me ...being parylsed by a stroke.Lets hope they sort me out.They'll probably say well its only a MINI hahahahaha.You have to laugh...so incompetant with me. Please let them hear me..But if anything ever happens to me pls make sure you all write to the doctor for me and tell him what a NIMROD he's been. So many people taking the p*** and so they think im one of them.Only if they'd join all the dots like we all are.
Once again.....thanks all for your replies and i hope you all have a good day.Thanks for caring about me.
Lots of love
Amanda.xxxxx

Angel Oliver
06-15-2011, 06:10 AM
P.s yes i do stop n smell the roses.What we have done is ,where Johns mum sat at the table,we have put a vase with roses and beautiful flowers in.John is going to keep fresh flowers there everyday in memory of her. But i know im lucky compared to some...i do smell the roses.xxxxx

Peridot20_Gem
06-15-2011, 08:02 AM
Amanda,

Thanks for letting we all know that you've left messages, it just ah good enough. You know i've had two major strokes ones where i was completely paralised and what i can't understand is with a mini stroke as they call them you only feel numb in one place but it's in your face and leg.

You joined way before me, have you got Sjogren's disease because that makes you face numb like a stroke and works it's way through the body as i told the sister up the hospital and she said it's the Sjogren's it does that. (i was just wondering mate that's all)

You takecare Amanda and rest well.

Luv Terri xxx

Peridot20_Gem
06-15-2011, 08:07 AM
P.s yes i do stop n smell the roses.What we have done is ,where Johns mum sat at the table,we have put a vase with roses and beautiful flowers in.John is going to keep fresh flowers there everyday in memory of her. But i know im lucky compared to some...i do smell the roses.xxxxxAmanda,

What a beautiful thought and it will help John also with his grieving...i adore roses and there's nothing better in your home especially with a good meaning to them.

((Hugs to you both)) xxxxxxxxx

Angel Oliver
06-15-2011, 01:08 PM
She rang me back the secretary so i told her what i wanted and she was understanding.She said she ll get the consultant to send the letter before the 27th so im prepared for my gp. Im not telling him till i see it in writing,as in my experience they always go back on what was said.Ive asked the question again...have i deffinately had a mini stroke....so its clear!
Yes i get numb face,leg,hands and arms and feet,so its hard to know.Especially when you have doctors with the ''god'' complex.Oh the fun i'll have with the cocky doctor who shouted at me for saying i dont have brain involvement...i'll make sure he gets a copy of the letter hahaha.xxxx

Gizmo
06-15-2011, 01:32 PM
She rang me back the secretary so i told her what i wanted and she was understanding.She said she ll get the consultant to send the letter before the 27th so im prepared for my gp. Im not telling him till i see it in writing,as in my experience they always go back on what was said.Ive asked the question again...have i deffinately had a mini stroke....so its clear!
Yes i get numb face,leg,hands and arms and feet,so its hard to know.Especially when you have doctors with the ''god'' complex.Oh the fun i'll have with the cocky doctor who shouted at me for saying i dont have brain involvement...i'll make sure he gets a copy of the letter hahaha.xxxx

While you might want to rub the doctor's face in the report, may I suggest some restraint. This guy already sounds like he has a problem admitting when he is wrong, and it may totally blind him to the facts. As painful as it may be, if you go in humbly and politely ask him what he thinks about the change in your health since your last visit (so he's not threatened) you will probably get a more reasonable response. It doesn't mean you meekly sit there and let him yell at you - but at least give him a chance to save face and do the right thing. If he's still an a$$ then you can challenge him. If getting a different doctor isn't an option, you are somehow going to have to make this relationship work, so don't make an enemy of him. Just my humble opinion, after dealing with lots of inflated egos.

Peridot20_Gem
06-16-2011, 11:57 AM
Hello Amanda,

I do suggest what Gizmo as said, sometimes you have to play with these Doctor's to get the results you want mate and i wish you all the best on the 27th and your letter in hand.

Angel Oliver
06-17-2011, 11:08 AM
Yes Gizmo fingers crossed i will do thanks.xxxxxx

tgal
06-17-2011, 11:28 AM
Mine are crossed with you!

Peridot20_Gem
06-17-2011, 03:46 PM
Hello Amanda,

How you been feeling today in yourself mate...is the numbness the same or eased abit? xxx

kim,l
06-18-2011, 08:31 PM
hello amanda hope you are feeling little better today and hope doctors sort things out. about you motherinlaw my fatherinlaw loved roses so when he passed away we planted a rose bush with a plaque underneath in the garden this helped hugs kim l

Linda From Australia
06-18-2011, 11:04 PM
Amanda I have only realised I haven't posted a reply, I am thinking of you during this difficult time

Nonna
06-18-2011, 11:38 PM
Have just reread thisthread, hoping you are doing ok. Hugs and good thoughts, Toni

lovedbyHim
06-19-2011, 04:50 AM
Hi Amanda, thinking of you and hoping you are holding up. I planted butterfly bushes in memory of my good friend who passed away. Every time I look at them I smile. Bless you.

Bonita
06-19-2011, 05:29 AM
My prayers are with you and your husband and i hope you soon get some body who will listen and be a good doctor with compassion and not blow you off. Bonita

tiggerlishus - Heidi
06-24-2011, 05:49 AM
oh angel sorry i have been awol recently on here nad have only noticed your thread today! i had a year of mini strokes before they took me serious and actually gave me brain scan i just wanted to sned you my love before i read on and see what other have said! hoping to find something is being done for you xxx

Peridot20_Gem
06-24-2011, 08:23 AM
Hi Amanda,

When it's possible it would be lovely for us all just to know how you are and if your ok.

Hugzzzzz you way Terry xxxx

Nonna
06-24-2011, 05:26 PM
I was going to ask about you. Amanda let us know how it's going.

Hugs and good thoughts to you

Angel Oliver
06-24-2011, 05:51 PM
Terri,Nonna,Heidi,Bonita,LbH,Linda,Kim & tgal,

You are all so kind in replying and caring for me.Thanks so much. Ive just been resting still wake with the numb arms and hands,one is usually better than the other so i reach over with the 'working; arm and lift the cold lifeless limb to get the circulation going again.Isnt it scarey as now i worry i may have a big one.Thats my worst ever fear,to be locked away yet the brain working fine.
Ive not been online much as worrying about things,my tribunal,the gp on monday,oh the hospital never sent me the letter from the eye consultant so i dont know whether not to mention it monday to my gp about the mini stroke.But then i thought,well perfifral vision loss is caused by a mini stroke,it says on the internet,so maybe i should just tell him n hope for the best.
Also, my friends mum had a stroke,the one who just found out she has brain n lung cancer,so its not looking good at all now,matter of time.Then my friend lost her son aged 3 months he fell asleep...didnt wake.My mum been ill....just every worst thing going on n worrying me.
Today i got my chair and sat and made Daisy a new plot at the bottom of the garden.It looks nice with new plants and angels on it.Ive placed some candles so i light them and think of loved ones gone.Also my thoughts are with our own Oluwa who is preparing to hold a service for her dear Bola who passed a few months ago.
I so hope you all have many good days and manage to rest or relax. John is planting a rose bush and raspberry bush in memory of his mum...he misses her dearly but is doing best he can.
I am alright,just a worrier....so want that lottery win hehehehe. Think of you all always and thank you for being the best of friends.Let me know how you are too.
Lots of love
Amanda.xxxx

OMG! How could i forget....next week i may be fostering a puppy yaaaaaaaay i'll let you know if i get one.Jess will be so caring and very jealous lol.xxxxx

Peridot20_Gem
06-25-2011, 03:48 AM
Hello Amanda,

Well with situations with what you've gone through it can be worrying and how your trying to work your limbs, if your able to get a walking frame you'd be surprised at how much that can help you plus it makes you fight it more mentally to get some usage back properly, been there mate and it was an hard struggle.

Amanda you have been busy mate but refering your appointment for your eyes mention it to your GP and usually they get the receptionists to chase it up, well mine does and yours should be the same and definitely mention your min stroke because i hope to god nothing furthur happens but they do need to know don't get sitting in silence Amanda incase you need help refering physio etc.

My god your in the devil of the big blue sea with what's going on around you and i'm so sorry to hear what's going on with family and friends and worry won't hhelp you one bit, it's more strain.

That must have made you feel good inside doing that plot in the garden...what a lovely thought.

Lovely thought of what John's doing for his mom, when my dad passed away i was so close to him and still miss him dearly now...i brought a plant and put it in the middle of the garden and come father's day/birthday and xmas a bunch of flowers was placed there and i was living in a flat on my own at the time, i bet the neighbours thought i was off my head but he was the love of my life...so i do know what john's going through it's terrible to lose someone so close to you.

Oh amanda how lovely mate and so thoughtful giving a pup a home it derserves good on ya mate.

P.S I'm still the same and still recovering from my op and i'm drained out and my liver is playing up like mad and just got my appointment for the specialist 23rd August..i just can't wait mate to get it sorted.

Hugzzzzzzz & Kisses to you both and look after yourselves Terry xxxxxxxxxxx

tiggerlishus - Heidi
06-25-2011, 04:01 AM
your brain and body must feel like its gonig throu a washing maching right now!! i know its easier said than done because people are al ways telling me not to worry but try worrying as really doesn't combine well with good health!!

i really hope you get a puppy i really found that getting bolt really helped me ( admitly a week later i got dan too! lol ) i fine when i'm on my own when dan is at work bolt is just the best company comforst when i am low and spurs me on when spirits are lifting!!

as far as me i don't know other than i am here still alive and kicking! plodding along! still very much in love with my dan managed to walk the race for life the other day which was very inspiring and still trying to lose weight and have a baby ( found out recently got a hormonal inbalance ) so its another ting not worknig properly needing help! hmm i think thats it i'm a very bit foggy head right now!

much love to you hunnie i'm determined one day we're meet some how by train or car!! lol

Nonna
06-25-2011, 04:06 AM
As always I send hugs and good thoughts your way. Wishing there was more I could do.
My new saying is:

Live for today and don't worry about tomorrow.
Live today to the best and fullest of you ability.


Frak dumb stubborn doctors who don't understand
Hugs
Toni

tgal
06-25-2011, 09:19 AM
Oh Amanda my heart hurts for you! The stress level that you are under can't be healthy for you. Please know that you are in my thoughts and my hope for you is that the new puppy brings you to a place where you can find some peace and solice

Angel Oliver
06-28-2011, 08:11 AM
Thanks so much everyone.You are the best for comfort!! Terry thats a great idea and its nice for somewhere close to go to say a few words in your mind to your dad,in my case little Daisy my dog.
Me and my brother stayed in the garden in the tent lol...i didnt sleep but he slept like a baby lol.I sneaked in and had 45 mins oh i felt rough then wentt to see the gp.He was actually quite nice,so i'll wait n see.Remember when i asked the consultant secretary t write to me about the mini stroke.I laughed so loud when she told me,the consultant says you have not had a stroke.Well its too late now.Ive told the gp and yet again i look stupid! He deffinately said perifaral visio loss is due to a mini stroke!! So im left looking a fool.No wonder my gp thinks im weird n looking for attention.Thats why i wanted the letter 2 weeks ago to confirm what he said.Its just like the lupus dx...taken back in a letter.I swear i know i heard him right and didnt pick it out of the air on my own...but my gp will now think it.Ahhhhh the joys of doctor appts....NOT!! I am just leaving it now,let em think what they like...they change their minds so fast i can not keep up.
Not heard yet about the puppy so will let you know.Hope you all have better luck with doctors than i have and hope you all are coping today and your pain is easing.
Lots of love
The maker up of illness's hahahahahahahahahahaha NOT! x

Peridot20_Gem
06-28-2011, 08:26 AM
Hello Amanda,

Lovely to hear off you, it was a way of coping with my dads death and 3yrs of councilling to help me get right more or less but i am sorry about Daisy.
Sounds like your brother had a lovely time even though you could'nt sleep, i've never been in a tent in all my life nore camping.lol
Well the symptoms you had sounded like a stroke and dow worry you ah a fool mate or feel like you've been left looking that way, the amount of things which can happen with us is so unbelieveable at times.
Amanda after i recovered from my strokes i had to go into hospital refering my seizures and on some things they check and i was told by the doctor you've never had any only because it was'nt in those records but as been stated since, all because i was back to normal i said i bloody did layed up in bed for 4yrs check my records and dow worry his attitude soon changed but what i hate is they love to make the patient look a fool but come them not one word of SORRY comes out their mouths, it does my head in mate.
Best of luck with your puppy when you do have it and that will lift your spirits mate and you takecare.

All my love Terry xxxxxxxx

Gizmo
06-28-2011, 09:19 AM
Remember when i asked the consultant secretary t write to me about the mini stroke.I laughed so loud when she told me,the consultant says you have not had a stroke.Well its too late now.Ive told the gp and yet again i look stupid! He deffinately said perifaral visio loss is due to a mini stroke!! So im left looking a fool.No wonder my gp thinks im weird n looking for attention.Thats why i wanted the letter 2 weeks ago to confirm what he said.Its just like the lupus dx...taken back in a letter.I swear i know i heard him right and didnt pick it out of the air on my own...but my gp will now think it.Ahhhhh the joys of doctor appts....NOT!!

OMG YES!!! I can't tell you how many times I have had that happen - they tell you one thing and then chart something different. It does make you look crazy. This just happened to us last month. Flew all the way to Washington DC to see specialists. One specializes in autonomic nervous system problems. I asked him point blank "can we say she has dysautonomia when we talk to other doctors?" and he said "yes". Weeks later we get copies of the records and it says the diagnosis isn't firm. Why do they do that??? I guess I need to take a taperecorder and then when the records are wrong, send a copy to the doctor and ask them to fix it.

Amanda, I am so sorry for all that you are going through. I hope your puppy arrives soon and makes you laugh and smell like puppy breath.

Saysusie
06-28-2011, 12:42 PM
Angel;
Oh my gosh, I cannot believe that you are having to go round with nurses and doctors again. Mini strokes are, unfortunately, all too common in auto-immune diseases (especially Lupus). In fact, people with Lupus are likely to suffer from recurrent mini strokes, especially if they have high blood pressure. So, once again, it just floors me that your nurses and doctors will not believe you and continue to deny you.
You are not a fool and do not let them make you think that you look like one. In my opinion..THEY ARE THE FOOLS!! Do continue to insist that they give you the letter confirming the mini stroke, especially given you current symptoms.
You are such a lovely and loving person and I am so sorry that you continue to suffer so. You are in my thoughts and, always, in my prayers.

Peace and Blessings
Namaste
Saysusie

wrightrs
06-28-2011, 05:06 PM
I had to go the my doctor today. I had My appointment on Monday. They called to change it till today. I never get anywhere with my doctors either. It's a total waste of time.

Angel Oliver
06-29-2011, 03:24 PM
Rebecca just hang in there i am sure one day each of us will get to the bottom of it all,we have each other for support and i hope the appt comes through quick.
Oh its good to know ,well not good, but good to know that im not the only one this is happening to. If you put into the laptop loss of periferal vision,it clearly says caused by T.I.A.....so if ive not had one what else could have caused it? But im going to leave it with the lupus word hehehehehehe you know what happened to that hehehehe.
I decided not to call the doctors and tell him i hadnt had one,let him find out by the letter and let him think what he likes.....i know what was said to me.
I must say,he did seem over nice to me,convinced me he really cared....or was that another ploy to get rid of me for a few weeks hehehehehe oh the joys of medical staff....not!
Also....hehehehehe i already have the dog and puppy breath....how funny.I used to have a nice breath smell....now my dog even turns away n smells her bum hehehehe but its my breath.....death breath in the morning.I brush my teeth,must be the meds and rubbish i eat...rotting...oh im so sexy hahahaha.
Thanks so much for your comment means allot.Take care.
lots of love
Amanda.xxxxx

Peridot20_Gem
06-30-2011, 05:57 AM
Hello Amanda,

I hope your feeling abit better today mate and John's also coping better in himself now.

Love Terry xxx