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Hi I'm Claire and after a bit of advice pls :)


ClaireyCro
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Hi everyone

Thanks Macca and Mary for your replies, I've printed the letter and I think I'm going to just hand it to him and get him to read it as I know I always miss things out when I'm trying to tell people... my brain never seems to want to work when I'm trying to tell somebody everything that has happened. I'm kind of hoping I will hear from the Immunology Consultant that I've actually sent the letter to before next Tuesday fingers crossed... miracles sometimes happen eh lol!!

There are just so many things that don't stack up right.... for the last 12 months I have been convinced that all of my symptoms have been ms or somthing similar I haven't even thought about what happened in 2010, obviously why the Immunology Consultant has come up with fibromyalgia as this MRI was clear. It wasn't until I started going back through all of my letters from 2010 and looking into aneurysms and calcification that I realised that when I was admitted in 2010 I had hallmark symptoms of a small bleed, yet when they realised it wasn't meningitis they just kind of left me. I then called my mum and asked her about the lumbar puncture and why they kept redoing it... her response... blood, I then remembered about them not doing an MRI after the consultant asked me if it had been done and I knew nothing about it. I have to wonder if the MRI had of been done in hospital like it should have been rather than 5 weeks after I was first admitted then this whole outcome would be completely different. I then ended up here, and I have to thank all of you for all of your responses... you have all been a big help to me and have helped raise my awareness in order for me to piece everything together and raise questions that until now I didn't even realise were there. I truly hope that I am over reacting and that all this turns out to be nothing however with so many misdiagnosises out there I don't think I can rest until I know for definate what was wrong in 2010 and wether it is relevant to all of the symptoms I have had since.

I really wish you all well in your recovery journeys and once again thank you for all of your help, advice and support.

Lots of love

Claire xxxxx

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Claire

Good luck for Tuesday. Make lots of notes when you are there, so that you don't have to try to remember what was said afterwards. If you do have someone going with you, ask them to note everything down for you.

Hope you get some more answers

Take care

kel x

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Hi Claire

I'm sorry you're having to go through this and for all the worry it's causing you.

I had a SAH in February 2009. My CT was clear (the aneurysm showed up on an angiogram) but I was diagnosed with a lumbar puncture. They look for blood particles within the spinal fluid but if it's not performed properly, there can be no spinal fluid, only blood from the surrounding tissue. There's a process that goes on, sorry I can't remember what it's called, within this fluid that can tell them when the SAH occured, if there are blood particles. My lumbar puncture showed the process at 4 different stages. That's why they knew that I had sentinel bleeds in December 2008, January 2009, February 2009 and then the SAH. The doctor showed me the fluid, it was sort of the colour of dark urine and it was the lab that said it was full of blood but the blood wasn't visible to the naked eye.

Maybe you should ask them to clarify that there was no blood within the fluid they eventually managed to withdraw. This at least might ease your worry over the lumbar puncture.

As for giving you a paper bag, is that not an 'old wives tale' and does nothing to slow down breathing when hyperventilating!

I hope it goes well for you on Tuesday and that you get the answers you need and deserve.

Take care.

Edited by Liz D
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Claire,

On a MRI W/WO Contrast 1 of the 4 IMPRESSIONS reads

: "Nonspecific T2 hyperintense foci ( an indication of a bright region of scan) within the periventricular ( old age, stroke, age related disorder) white matter; these are most likely the result of a chronic microvascular ischemic ( sub type of stroke decreased blood supply) changes. Demyelinating ( multiple sclerosis) process could appear simiarly, and and clinicial correlation is needed in this regard".

So when I read my reports I have to break down all the words and think......was this going on when I was ill several years ago and I went on gabepentin and then cymbalta? MS has always been on the list of diseases to rule out with my health. It makes me wonder. I do not think they want to share everything with us for a reason. We want everything explained, as they would as well. I am not sure but I think most of maybe have several things going on? It woud be interesting to know if that is true. Sorry I forgot what my point was for writing this........ be back when I remember.

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Morning everyone

Thanks for all your well wishes and good luck messages, just hope he's more productive this time rather than just offering me the paper bag for comfort lol!!

Liz - Thanks for that info its really helpful, I didn't realise they could tell with spinal fluid that there has been a previous bleed, definately somthing I'm going to get them to look at I think.... I've now requested my medical records from when I was admitted in 2010 and also a copy of the MRI images... think its going to cost me about £30 but hoping it may help get me some answers and this should then have all of the lumbar puncture results on it so hoping I should be able to see what they tested it for.

Mary - Thanks also for your info, it certainly does make you wonder, I'm still yet to receive the MRI report for this latest MRI, he said he would post it but haven't got it yet so will be interesting to read it. The only report I have is the one from the first MRI in 2010 which is the one that mentions the calcification or the aneurysm, I've requested the hospital notes and the MRI images, think I'm going to request the CT scan images and report aswell.

Just one quick question... last night I went to the downstairs loo, our bulb has gone and yet to be changed therefore its very dim in there as we are currently just putting the hall light on. When I was washing my hands I looked up in the mirror and noticed my right pupil was significantly larger than my left... its my right eye that I keep having probs with, when I went back in the front room I turned the main light on (the light was off as we were watching a film) and looked in the mirror and it was fine... it seems to be ok in normal light but not in dim light. Is this anything I should be concerned about?

Thanks so much again

Claire xxxxxx

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Claire if your pupil on one side is significantly bigger than the other in daylight please go to A&E. this indicates pressure behind your eye & was the only sign of my anni other than the severe pain. As time went on my pupil got bigger & bigger & everyone kept saying it looked like a bleed, it wasn't but there was a 6mm anni pressing on the 3rd nerve.

Please please go & get checked out now xxx

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Hi Claire,

Welcome to BTG, sorry, don't think I've said hello to you yet!

I work in Optics and have just got advice that if you haven't already gone to A&E or an Eye Hospital then it's strongly advised that you do, given your previous history. At the very least call NHS Direct.

Please let us know how things go.

Take care,

SarahLou Xx

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Hi Claire

I think it depends on what tests the lab is able to do. My local hospital was limited in what tests they could carry out and I was told if there was no blood in the sample then they would have to send it to another lab for further testing.

I had symptoms of having previous bleeds. In December 2008 I had been on a night out with colleagues and they thought I was a bit too tipsy (I'd only had a couple of drinks)! My husband actually thought my drink had been spiked because when I came home I was slurring my words and couldn't remember where I had been. I also was very sick during the night and had a headache.

Similar in January 2009. Out with the girls and this time I'd only had one drink and had to leave early because I didn't feel well. I woke up in the middle of the night being sick and had a headache, I was sure it was the curry I'd eaten! The next afternoon in work I noticed that there was blood in my eye but just put it down to bursting a blood vessel because of how violently I was being sick. Never did I even think to connect these two!

Then in February the aneurysm ruptured, refilled and ruptured 4 days later. It was the fact that I'd survived all of this amazed the docs, they always referred to me to as their miracle! But my aneurysm was on the left vertebral artery, so a lot of the blood went down my spine. This was why they sent my sample to a university lab for further testing.

I hope it goes well today and you get some answers to your questions.

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Hi everyone

Thanks for all of your responses, sorry I haven't replied I didn't see any of them until yesterday and then I got slightly concerned but decided to wait to see what the appointment brings!!

Surprise surprise he didn't want to listen. I took the letter that I have written to the Immunologist and he didn't even want to read it and didn't read it... he barely let me get out everything that I wanted to say that I had written down. I told him about my eye and he wasn't interested just said some people have abnormal pupil sizes, when I quizzed him about my deteriorating vision combined with it he didn't really respond. I have even managed to record the pulsating sound in my head on my iphone... it was particularly bad last night when I was led down, I played it to him and he wasn't interested just said that lots of people can hear a pulse in their head if they move their head in a certain way.... I said its not when I move my head but once again not interested, funny that because I've read that only 3% of tinnitus for example is actually pulsatile!! He wasn't even phased when I told him that my arms keep going dead like when you have slept on them all night... but its happening when I'm just sat on the sofa watching tv!!

No neuro examination, no checking my eyes... other than he got me to sit on the bed and he tried to dim the room as much as possible and that's when he just went hmmm some people just have abnormal pupil sizes you know so obviously he saw it too, no using a stethoscope to try to listen to the pulsating in my head. I played him the recording on my phone and thats when he said about moving the head in a particular way can cause you to hear a pulse in your head!!

I just give up, get the impression they all think I'm a raging hypochondriac... he just told me to 'get on with my life'!!!! How can I when I know/can feel something is wrong and they have failed on numerous occasions to properly investigate it fully!! I don't think I can take much more of this, I can't afford to pay for an MRA or CTA scan privately, initially I thought it would only be around £250 but I've since found out it will cost me around £500.

Any suggestions anyone??

Lots of love

Claire xxxx

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Is there anyway to see a different Dr.? I am not sure how your medical community works but that guy is a jerk. I however complained all last summer to no avail about not feeling well and extreme fatigue, confusion etc......and I live in the States where I can choose a Doctor. It is just not right. Sorry for your waste of time but there has to be a way to get in the system and be seen by someone else.

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Hiya Mary

I've just called the Immunologist's secretary and she is going to tell him about the pulsating and vision issues, she said he has also dictated a response to my letter which she has got to type up today so wether that will shed any light I'm not sure.

Over here basically we have GP's who we primarily see if something is wrong, they then refer you to Consultants at the hospital if they feel something needs further investigation.... well my GP's I think have had enough of me and won't really do anything with me already being under Consultants, they just say its all neurolgical symptoms and the Consultants are the ones who aren't investigating anything fully or properly. What makes me laugh is apparantly (so the radiographer told me when I went for the MRI) the reason my CT scan in 2010 and the MRI scan the other week hasn't been done with contrast even though they have been requested with contrast is because 'shes too good for contrast, she doesn't need it'. Well everything I've read and everything you have all told me on here completely contradicts that, it doesn't seem that rare that issues with the blood vessels in the brain are NOT picked up on regular MRI or CT which is why they should be doing an MRA or CTA I think. The other problem is the Consultants put the request for a scan in, the request is then sent to the radiologist to look at and then the radiologist has the final say on the scan. So even though it was a radiologist who requested the CT scan both with and without contrast in 2010 after the first MRI, because I moved from England to Wales in the meantime therefore moving to a different healthboard it was the radiologist here that made the final decision on what scan I would have.... its a joke!!

There's no other way round it other than to pay to go private which I can't afford to do and even then the majority of the NHS Consultants round here are also the Private ones anyway so chances are I'll see the same people. The only other option I have is to drive 40 miles to my parents house and pay the A&E department there a visit to see if they do anything but to be honest I'm just at the end of my patience with it all and just feel like no matter what I do they just think I'm nuts!!

Lots of love

Claire xxx

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Hello Claire,

Omg it's not often that I'm lost for words but seriously you need to get a second opinion.

This simply isn't acceptable.

I know that you shouldn't need to but could you take someone else with you to your appointments? It's good to have someone there to back you up if needed and take note of what's being said.

Perhaps you should think about making a complaint if you don't feel that you're being taken seriously.

It's worth having a chat with the practice manager.

I also have tinnitus and the pulsating tinnitus too. They gave me another MRI of my head and neck, that was 16 mths after my surgery.

Please feel free to PM me anytime.

Keep fighting, this must get sorted out!

Take care and keep smiling,

SarahLou Xx

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Hi SarahLou

Thanks for ur msg!! I know it's ridiculous and I just don't know where to turn I've always been a healthy happy go lucky person and never really been unwell until all this kicked off in 2010, it's just been ****** up after ****** up and just end up getting passed from pillar to post, usually I do take my partner with me but he couldn't come today!!

I had 2 and a half hours sleep last note because of the pulsing in my head and to be honest it actually makes me scared to go to sleep but nobody will listen!! I've got to go back to gp tommorrow to see if I can go back to work I've been off for nearly 7wks now and it's driving me nuts but at the same time I don't know if I should go back as still far from feeling right!! Guna see what he says (it's the practice manager I usually see anyway) and if no joy I'm going to drive up to mums and go into a&e... It's under the same health board as I was first admitted to in 2010 but atleast they are guna be different doctors to here who can hopefully take another look!!

I just want to scream!!

Lots of love

Claire xxxx

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You go ahead and scream Claire, you've every right and this is a place where you can be open and honest about how you feel.

I'm on medication to help with my sleep, or I wouldn't sleep. I've been on them for over a year.

I've also been to hearing therapy at the hospital which I found really helpful.I was referred to ENT very early on about the tinnitus.

Which part of the country are you from? Reading others experiences I realise how lucky I am to get all the support I've had. Must say my gp is fantastic, I'm very lucky.

Keep us updated on how things go.

Take care,

SL Xx

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Hi Claire,

Your nightmare seems to be going from bad to worse. Just wondered if PALS (the NHS patient and advice liaison service) would be of any use to you. I've no experience of them, but I understand you can complain/get advice through them if you are not satisfied with any aspect of your care. Again, it's more hassle, but it might take some of the unwanted, undeserved pressure off you. Good luck,

Sarah

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Hi everyone

I'm in Monmouthshire in Wales live with my partner, my parents are in England but only about 45 mins away which is where I'm from!!

I'm just about to ring and book an appt with gp just hope he listens!! Ive tried making a complaint before because a referal wasn't done which was supposed to be and ended up going backwards and forwards between the hospital and gp for 6 weeks to try and sort it out being told different things by different people and the complaint people didn't bother calling me back its all just one big joke!!

If I get nowhere this morning I'm going to try calling the complaints team again!!

All I want is to feel normal again and get back to being the happy go lucky girl I was!! Xxxxx

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Well been to see gp and I think they may finally be taking me seriously!! He listened to the recording and also used a thingy inside me ear and he heard it... He said he could hear it and it's definitely blood pumping through my head there's nothing else it could be as if it was something else he wouldn't hear it, he's also noticed the issue with my eye and is concerned about my arms going dead!!

He's writing an urgent letter to the neurologist that I saw last year and he said that was all he could do!! This neurologist is the same one who told me last year that he wouldn't re MRI me as the nhs simply don't have the resources to continually MRI people so not holding out much hope to be honest but hey ho!!

So now I see myself with 2 options I wait around for the immunologist and neurologist to contact me or I just drive down to my parents house and get myself into a&e there to get a different opinion!!

What would u guys do?

Thanks so much as always.

Claire xxxxxx

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Hi everyone

Just thought I'd give u an update!! Went to my mums leg went dead for a few mins on Thursday, pulsating was still bad and vision in my right eye still not sorted itself out so my sister took me to a&e!!

I was assessed immediately by the sister who listened my blood pressure was 147/84 and my resting pulse rate was going between 94 and 106!! She took bloods put a catheter in my arm told me she had booked a bed and was organising a cta with contrast which would be done in the morning!!

A doctor then came down to assess me... He listened to my history and as soon as he got wind that I've not yet been discharged from the immunology consultant the catheter was out of my arm and I was out the door and home quicker than u could imagine he just said I think it's best that they continue looking into it!!

So now I really don't know where to turn the pulsing in my head is horrific last nite my lower right arm went dead again for a few mins and the immunology consultant still hasn't responded to my letter or returned my call from Monday!! I don't know where to turn or what to do!!xxxxxx

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clareycro

i have sent you a pm i would go to the hospital again and ask to go to the eye dept if it has an eye casulty and get them to check your eyes may i ask why you are under the immunology dept is it because of your sah i dont understand why they are treating this way if one person says you need to stay who in their right mind would counter that choice i hope you have his name

one other thing someone brought up the paper bag does work for hyperventilaion if its held over the nose and mouth and help by the person suffering from hyperventilation i have used the paper bag many times in my career

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Hi Sandi and Paul

Thank you both for your messages.

When I went into A&E last Thursday the Nurse Sister was obviously told what to do by the Doctor before he came down so I don't understand either how they can do all that and then just send me home without examining me just saying that he thinks its best my current Consultant looks into it. My sister works in the NHS looking after children with terminal illnesses and she said unfortunately she also sees it with the kids and its a case of Consultant politics, she was with me at A&E so saw exactly how I was handled.

Paul, thanks for your PM bless you I haven't had time to properly read everything yet as went back to work yesterday (although I really don't feel well or ready but had to as going to stop receiving sick pay soon) but as soon as I have I will pop you a response. I haven't had an SAH or atleast not as far as I know. I was admitted with suspected meningitis in 2010 which turned out not to be however they didn't do an MRI until 6 weeks after discharge at which point they thought they saw an aneurysm or calcification and requested that my new GP in Wales organise a CT with and without contrast however they never did one with contrast only without and decided it was a lipoma... in a different area of my brain and a different size to what the MRI said!! Since then I've had a few different neurological issues however now I have objective pulsatile tinnitus and my arms and right leg keep going dead which is why I paid A&E a visit. I'm under Immunology as the Neurologist I saw last year who wouldn't re MRI me because apparantly the NHS simply don't have the resources to continually MRI me referred me to Immunology after my nerve conduction studies came back normal.

To be honest I think any new consultant I see in the NHS now can smell a ****** up because of the lack of care and that's why they don't want to treat me... I may be wrong however this is the only conclusion I can come to. The Immunologist still hasn't responded... I'm going to try calling again today and then I'm going private I think. I hope and pray that there is nothiing wrong however I don't think I can put all this to bed or get a decent nights sleep until I do.

Hope you are all doing ok.

Lots of love

Claire xxxxxxxx

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Claire,

I read your story with increasing dismay. It just isn't acceptable that these people keep sending you away. Keep plugging away at them - in the best case scenario it's nothing, the worst case doesn't bear thinking about. It sounds as though everyone is trying to discharge their own liability here - isn't that so British? - instead of tackling the issue head on and dealing with it. Do the people you are seeing have the right skill level to do this - are they even skilled enough to be able to tell you what they currently are? Sometimes what you realise doctors don't know is more frightening than what they do know!

You keep at them girl until you get some satisfactory answers. I hope you are keeping a diary of events as they unfold.

Keep going lass, we're right with you (and keep posting)

Good luck

Macca

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