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


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Hi Everyone

I've been reading some of the posts on the forum after doing a bit of research on my own situation and admire how you all cope with everything you have been through.

I'll apologise in advance as I think this post may be quite long but I'm really unsure as to what is going on and needed a bit of advice... they suspected an aneurysm in 2010 but am worrying things have been misdiagnosed.

In August 2010 I suddenly became unwell on the last evening of a holiday in France, sudden onset of headache it felt like my head was going to explode, I took 2 painkillers hoping it would go away. They helped slightly but it was still there. We flew home the following day and still had headache and feeling very dizzy and lethargic so I went to my GP on the Monday morning, she thought it could be some sort of viral infection and told me to come back and see her the next day if no better. Went back the following day as I was still feeling awful and developed an extremely stiff neck so she sent me into hospital with suspected meningitis, I had no fever or rash just the headache, lethargy and stiff neck. They carried out a lumbar puncture at about 11pm however the doctor attempted it numerous times and remember her saying she couldn't get spinal fluid just blood so they would reattempt it in the morning. The doctor saw me in the morning and said he would do the lumbar puncture about 11.30am, it still hadn't been done by 2pm therefore I asked him and he said 'oh I forgot all about that' and eventually did it again about 4pm. Different doctor to the one who attempted the night before however he had the same problem with drawing blood so they sent me down to theatre about 8pm for the anaesthetist to do it who as far as I know managed to draw spinal fluid. As far as I remember no neurological examinations were carried out the whole time I was in hospital.

The next day the doctor said it wasn't meningitis and they weren't sure what it was so just kept dosing me up with Cocodamol. I remember him asking me that same day 'have you had your mri yet' to which I replied 'what mri' as I knew nothing about it, he said oh I'll check on it and then nothing more was said or done nor did I receive a scan. I was discharged on the Friday. I saw the doctor again 2 weeks after as an outpatient and as I was still getting headaches they decided to send me for an MRI. I had the MRI done approximately 2 weeks after that appointment and when the results came through a month later it stated that there was an area of high signal on T1 and FLAIR which was unable to identify on T2 in my left cerebellum which they thought represented either an area of calcification or a blood containing lesion such as an aneurysm and requested a CT both with and without contrast to distinguish between the two.

In the meantime I had moved from England to Wales so the CT was carried out on a different healthboard however when the CT was done (I only realised this the other day when going back over my letters) it wasn't done with contrast only without. The neurologist wrote to me stating that they thought it was an incidental finding of a lipoma and no further follow up required.

In May 2011 I started to get on/off numbness on the right side of my body, fingers and toes initially then progressed to hands, feet, arm, face. Then pins and needles and dizziness started therefore I was referred to a neurologist again as my GP suspected MS. I saw the neurologist and he basically completely wrote me off trying to put it down to stress... although I'm not a stressful or anxious person and I told him that, he wouldn't re-MRI me as he said the NHS simply don't have the resources to continually MRI people and just sent me for nerve conduction studies to check for peripheral nerve damage which came back normal and suggested I be referred to an immunologist. Following that the symptoms subsided a bit however I forgot to mention earlier in this message that I have had permanent headaches since November 2009.

I then had a period of approx 5 weeks in Jan/Feb this year of blurry vision issues. I saw the immunologist in Feb and he referred me for another MRI and put me on pregabalin for neuropathic pain. Since that appt I have been off work again for the last 4 weeks due to sharp pains at the back of my head, drunk like feelings, prickling on my skin and so on. I've been into hospital and sent home on the same day with a brown paper bag to breathe in and out of after them doing only a few of the usual neurological tests i.e. push away, pull towards etc. What has alarmed me again is that for the past few days I have once again had an awful headache different to the norm dullness that is sharp at the back of my head again and the rest of my head feels like its in a vice and my neck has been stiff, also feeling drunk again. Last night I thought I'd take 2 ibuprofen and have a bath to see if that made me feel better... if anything it made it worse, the pulsing sensation on the left side of my head became more intense and when I started to walk into the bedroom I had cramp like burning pain in my feet, ankles, right hip and spine. I woke this morning and the headache isn't as bad but still got pain in my hip and right leg. I haven't been to A&E because I don't really know what I should be doing as I'm under consultants and waiting for the results of my MRI that I had done last Friday.

My worry is after doing a bit of online research (know I shouldn't really research the internet), what they originally though was an aneurysm was misdiagnosed as a lipoma and actually what happened in 2010 when I was admitted was a sentinel bleed and could that be what is happening now.

I've tried ringing the consultants secretary again today as yesterday morning she told me he would ring with my mri results and he didn't. My docs surgery have been told that they are not allowed to tell me the result that it has to be the consultant although the consultants secretary faxed them the report yesterday and really don't know what to do.

Thanks for listening.

Many Thanks

Claire xx

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Hi Claire

Warm welcome to the site, glad you found us.

My you've been through it, on the contrast thing I think thats only if you've had clips or coils.

can only suggest you keep on at the consultants secretary till you get an answer.

hopt you find the site useful...

take care

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Althought MRI's are great they don't always give a full picture. I had a CT which was clear & then 17 days later an MRI. I was told they suspected an anni but they could only see it on part of the MRI, it wasn't confirmed until I had the angio.

If you have concerns I would def be back at the GP asking for more tests & to see a neuro cons, don't let up until you are happy with what has been explored & found. i was fobbed off by the first Cons I saw & was undiagnosed for 6 weeks so please keep hassling them until you are sorted out properly.

Wishing you all the best xxx

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Hi Claire,

you need soome proper answers. You need to be a bit more assertive to the point of being angry. You can always apologise afterwards if need be. You can't solve your problems if you don't know exactly what they are. Demand to see this consultant and do a bit of straight talking.. yes he's qualified and probably has more letters after his name than the Post Office, but he is still a human being and they can make mistakes. Doctors are not infallible, so don't be embarrassed, just go for it.

They 're playing with your life Claire, so don't be fobbed .

Good luck and let us know how you get on

Macca

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Hi Claire,

What an awful time you've had with all this. I would certainly try the consultants secretary again in the morning, but if you get too worried before then, then A&E maybe an alternative, there is obviously something causing all these symptoms and you could really do with getting some firm answers. Many of us were misdiagnosed with sah, so I would hate you to be another.

Hope all goes well,

take care,

Sarah

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Hi Claire

I would be inclined to go straight to A&E. You will just get stressed keep phoning and waiting to try to find out results, which is exactly what you don't want to do.

From everything you have written it certainly sounds like a few people have forgotten to do certain things that could have greatly helped your situation, rather than jeopardising it (like it sounds as though they have).

Maybe take along a copy of what you have written here, as well as any other copies of documents/letters you may have that could help them diagnose you properly?

I do hope you get some answers soon, you certainly deserve to know what it wrong, what can be done, and when!

Good luck

Kel x

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I always got headaches in the past.......if you are at all worried.,.which you obviously are....and you have every right !!!

Being fobbed off isn't fun when you are worried.....Go to Docs and explain to him.... Better to be safe than sorry....

Try and keep calm though as stress is not good for anyone...easier said than done !!

Sort it out with Doc. and..Good Luck Claire xx Chin up xx

Best Wishes

Love

WinB143 xx

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Hi everyone

Thanks so much for all of your kind messages it really means alot.

As my headache is not as bad as it was on Wednesday night I decided to leave it until this morning however I've tried contacting the consultants secretary again this morning and its going straight to a voicemail which you can't leave a message on again!! Going to wait for the post to arrive to see if they have sent me any letters or anything and if not get back on the phone to the GP surgery to see if I can squeeze anything out of them.

I noticed a couple of you said that you had sah misdiagnosed, bless you and I admire how you have all pulled through what you have been through, I was wondering what your experiences were... i.e what happened, what the docs said it was and so on? Just thinking if it was a sentinel bleed that I suffered in August 2010 would it really of held out until now or could I actually experience sentinel bleeds for a while before something else happening? Sorry to ask so many questions I'm just trying to knowledge myself so when I do eventually get to speak to the consultant I may be a bit more prepared.

Thanks again, its really appreciated.

Lots of love

Claire xxxxx

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Clarey I was told so many different things in the 6 weeks between anni & diagnosis. As my anni didn't rupture I didn't show the signs of a bleed for almost 2 weeks. The pain in my head (behind my eye) was excrutiating & I thought my eye was going to burst. At the hossie they gave me paracetamol but it didn't touch the pain. I had a migraine while i was there & thats what it was initially dismissed as.

I went back to my GP several times & was told a trapped nerve, cluster headaches & was firmly told it wasn't life threatening, I hardly slept which made the pain in my head worse, I was given amytriptaline which helped some but didn't get rid of it entirely. I started to get double vision about 2 weeks after the pain in my eye & my pupil started to dilate, a ct was done but was clear. It was then a 17 day wait for the MRI during which my pupil was fully dilated & by the MRI I couldn't open my eye at all (3rd nerve palsy). Both my own GP & a GP friend said it looked like a bleed but nothing was done until 8 days after the MRI when I was told it was suspected I had an anni. I never really knew how dangerous my situation was until after the clipping.

Some of your symptoms could be those of a migraine (the blurred vision, the pressure headache, the pins & needles) but for them to happen suddenly def needs further investigation in my opinion.

xxx

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Hi Claire

A brief summary of events for me;

My SAH happened Fri 18.20pm 11/12/09

Phoned NHS Direct Sun 5am 13/12/09

Got call back from NHS Direct 9am 13/12/09

Went to walk-in-clinic Sunday midday 13/12/09 - was told I had a virus, go home, rest and take paracetamol; argued with the Dr who then made and appointment with emergency Dr 7pm 13/12/09 - was told I had a virus, go home, rest and take paracetamol; argued with him to no avail

Went to own Dr Tues 11am 15/12/09 saw nurse practitioner who wanted to rule out a bleed. Sent to local hospital.

1pm 15/12/09 admitted to A&E - CT scan done, CT scan with dye done, Aneurysm located but no bleed. 8pm lumbar puncture performed (took an hour) no bleed found.

Weds 16/12/09 - Another hospital located bleed on CT scan, (Local hospital had detailed my SAH as 15/12/09 rather than 11/12/09) coiling op arranged for Friday 18/12/09

Thurs 17/12/09 - blue-lighted to other hospital

Fri 18/12/09 - op due at 8am but more urgent case admitted. Op at midday till 3pm.

Discharged with nothing more than a 4week sick note Thurs 24/12/09.

My story is a fairly long one... if you're up for a read please see this link ;)

I hope you get some answers very soon!

Take care

Kel x

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Hi Claire,

So frustrating for you that you can't get through to the consultants secretary:roll:

I think quite a common misdiagnosis by members on here is being told it is a migraine. I personally wasn't given any suggestion as to what it was, despite me telling the 999 operator that I thought I was having a stroke, the paramedic did the push/pull tests that you mentioned along with blood pressure etc and then left me home alone. I then saw a doctor twice, an optician, spoke to NHS direct yet none of these professionals picked up on it. I got to hospital a week later by my parents insistance. Which makes me think you will really need to push these guys when you do get to speak to someone, if just for your own peace of mind. I don't recall having any other symptoms you mention, but my vision nearly disappeared at the time and over a year later I was sent into hospital again following an episode of double vision (by this time you mention sah and they whizz you in).

Hope you get to speak to someone soon and let us know how you get on when you can,

best wishes,

Sarah

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Thanks for coming back to me Gill.

Gosh bless you you really did go through it, are you all ok now hun?

I'm on amitryptline, they put me on it when my symptoms flared up again 4 weeks ago, basically what happened was on the sunday morning I had a really sharp pain on the back left of my head, I've had it before but this was more intense and lasted slightly longer approx 5mins, the prickling down my spine started about half hour after that and that was on and off all day and then on that evening the whole left side of my body started prickling from my head to my toe. I left it as thought it was just another neuro symptom that I was awaiting an MRI for however the next day it was all around my neck and then suddenly felt sick and dizzy like I was going to pass out at about 3pm at work, I rang NHS direct about 7pm as was still feeling awful and really spaced out who sent me down the hospital to the out of hours gp. He checked me over did the usual push, pull, squeeze hands etc and said if I wanted to be admitted he would admit me but didn't see any signs of a medical emergency and if I still didn't feel any better to contact my gp in the morning.

I called the gp in the morning and she was quite rude to me on the phone told me she couldn't see me that day and booked me an appointment for the following day. Went to see the gp at 9am on the Wednesday told him what had happened and he took my blood pressure etc, he said my blood pressure was slightly high and therefore admitted me into hospital to be on the safe side. When I got to hospital I was left waiting in the day room they took bloods etc and then I was assessed by a junior doctor who once again carried out a few neuro tests similar to out of hours gp and said that all looked fine, I told her exactly what was going on and also all my previous history and then they did an ecg on my heart which was fine. I was then assessed by a consultant who asked me what was wrong again and then started dictating to the junior doctor... anxiety led neurological symptoms to which I replied its not anxiety I don't suffer with stress or anxiety and I certainly wasn't stressed or anxious when all this started on Sunday however he ignored it and carried on, he sent discharged me a few hours later with a paper bag to breathe in and out of.

The next day I went to work but was getting worse, I felt as though I was drunk and spaced out, rang the gp surgery again and they booked me an urgent appt for 5pm with the gp who was originally rude on the phone and she said we just have to wait for the MRI to be done and took me off the pregabalin as she thought that may be the cause of me feeling drunk, the prickling on my skin and the cramps but in the week that followed that all got worse so they started me on amitryptline 10mg at night.

After a week I was still having symptoms so they upped the dose to 20mg. I saw the gp again on Tuesday this week as I have to keep going back because they keep signing me off work, I told him everything that had happened over the last week and that this headache had started again on Saturday and it was worse than usual, I was feeling dizzy again, my neck felt slightly stiff, could feel pulsing in my head, my right index finger tip kept going numb etc etc and he just said its all neurological symptoms and he upped the amitryptline again to 50mg and signed me off for another two weeks to wait for the MRI results.

I worry now that the increased amitryptline dose is maybe masking the headache slightly as its still there but not as bad but do keep getting the odd super quick shooting pain and can still feel/hear the pulsing, I had an electric shock type pain in my right eyeball yesterday and my eye just feels slightly bruised now and foggy (like I've got cream in it or something) and still feeling a bit spaced out.

Its so frustrating not knowing what to do and nobody telling you anything and sitting here wondering if what is happening is actually extremely serious. I've rung the gp surgery again this morning and they are still adamant that they cant tell me anything and can't get hold of the consultant or his secretary. I'm going to try ringing the hospital where he is based in a mo to see if there is someone else they can put me through to.

Aaaaaaaaaarggggghhhhhhhhhhhhhhhhhh, sorry just needed to get that out lol xxxxxxxx

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Sorry Kel and Sarah, I was in the middle of writing the long long post that I just did and now noticed both of your responses too.

Thanks for sharing your experiences with me, I admire you all for how you have coped with everything, everything you are all saying is giving me a kick up the backside to start shouting I think. xxxxxxx

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Claire I am remarkably well thank you considering what could have happened to me (my neuro told me in no uncertatin terms that had my anni burst I would have died) although I think the nerves that control my pupil & movement in my right eye are permanantly damaged so I still have double vision.

I had the same tests as you, the baring of the teeth & raising arms above your head, pushing & pullin the Dr's hands.

I would say if the amytrip is not sorting the pain out then you do need to have further investigations done as soon as possible. I know Karen who runs the site had a bleed before her anni burst so she may have somethig to say which might help

My full story is also long but if you have time you can read it here http://www.behindthegray.net/vbulletin/content.php?278-Gill-s-Story

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Claire, keep pushing them until you get your answers. It's unfortunately true that many members here were first misdiagnosed. I was lucky to be taken seriously from the very beginning. It's the after care and lack of answers that I have found frustrating. I recently read an article online that was about a woman who won a lawsuit for 3 million dollars for having her SAH misdiagnosed as migraine. I hope you hear from your docs soon and that your tests and results come out ok. The stress of worry and wondering can't be helping you and it will best to know what's happening.

Hugs,

Sandi K. Xoxoxo

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Sounds daft but I think I was very fourtnate to have two cracking ambulance men who sussed there was something and got me to the right hospital & a brilliant consultant who saved my life not once but twice...

But I also can share with you in the frustration as Ronnie's cousin wasnt so luck with that so I do know both sides of it...

I also know that in some cases it can be easy not to see the signs.

its one of those double edge things....

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Hi Claire,

'Shout, Shout, let it all out' (Tears for Fears song). Preferably at that wretched haridan of a Doctors secretary! It's not enough for them to say we have to wait!! keep pressing and get angry with them and when you are proved to be right and when you feel up to it - go back and say I told you so and embarrass the socks off them. The way they are treating you (or should I say not treating you) is simply appalling. It appears their competence levels are lacking and if that is the case then I won't blame individuals, but as in the words of the AA advertisement you need to be put in touch with 'I know a man who can' Keep pressing for answers until you get some!!

Good luck

Macca

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Hi everyone

Thanks for all of your replies, its really appreciated.

Well one thing I certainly didn't expect was the Immunology Consultant I'm under calling me yesterday at 4pm. He has said my MRI was completely clear and that he thinks my symptoms could be related to fibromyalgia. He wants to see me again in 12 months however wants me to write to him every 3 months with an update of symptoms etc and for any symptoms to be treated symptomatically as they have been with tablets so far.

I don't really know too much about fibromyalgia therefore had a quick look on the internet yesterday and I agree some symptoms do fit however the hallmark symptoms of it from what I have read are chronic fatigue/unrefreshing sleep and chronic pain neither of which I would say I have. The symptoms I have experienced do ring true with things that come under additional symptoms a patient may experience but not with the main symptoms, also I can't really find anything about peripheral vision issues for example. Another thing that doesn't really sit right with me is that the scan was completely clear... as I have said in my earlier posts this all really kicked off when I was admitted to hospital in August 2010 with sudden onset of extreme headache, stiff neck and general body malaise which they thought was meningitis, they carried out separate lumbar punctures in total, the first one on the night I was admitted when they were trying for around an hour and all they could get was blood, the same happened again the following day and then they sent me down to theatre for it which as far as I know they then managed to get spinal fluid and then they told me the following day they didn't think it was meningitis. I had an mri approx 4 weeks after being discharged when they found what they thought was an aneurysm or calcification in my left cerebellum and sent the report directly to me as we moved from England to Wales and they requested that my new gp organise a neurology referral and a ct scan both with and without contrast. The ct was only done without contrast and they said that they thought it was a lipoma which is a benign fatty tumour in my quadrigeminal cistern and it was an incidental finding and no further follow up required.

What doesn't sit right with me is that they have said that this mri was completely clear... if they had said that other than the lipoma the mri is completely clear I could understand.

I am happy its clear really I am and have decided to stop taking the tablets that I have been prescribed as I want to see what happens without them... I know this probably isn't a good idea but I guess I just want to see what symptoms I get when I'm not taking them to see if I end up in actual pain if that makes any sense to anyone.

I'm going to do a bit more research into fibromyalgia as I really don't know much about it at all, I think I'm also going to get a copy of my medical records and write a letter to the immunologist about what I've said above regarding the scans to see if he can shed any light on it. Do you guys think thats a good idea?

Thanks again for all of your help and advice, its really appreciated and I wish you all the very best in your journey's.

Lots of love

Claire xxxxxxxx

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Hi Claire,

I think I, in your situation, would be inclined to write to the immunologist for clarification regarding there being no mention of the lipoma especially as there had been some initial doubt as to it being lipoma or aneurysm. It's great that you have been told your mri was all clear, but this niggling question wants clearing up in your own mind. Ought you not to be weaned off any prescribed medication under supervision of your gp though? I don't know anything about fibro but I hope you manage to get to the bottom of all this soon.

Best wishes,

Sarah

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Hi Claire,

I had a NASAH, a non-aneurysmal bleed in Nov 2010. If an MRI were performed on me now it would likely come back clear. Mine was a perimesencephalic bleed. With that type of bleed it's not likely to happen again and prognosis is very good. I am still recovering though. If you had a similar type of bleed in Aug 2010 I wonder if the tests would show any evidence of it? The neuro's tend to think we are 'all better' when our brains appear healed. There can be symptoms that go on longer though that I'm not sure can be measured by an MRI or other Angio. Not yet anyway. I'm wondering if it's possible you had a bleed and are still experiencing symptoms in recovery.

Of course none of us are doctors on here and maybe they are able to tell when there has been a bleed years before.

Sandi K.

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Hi everyone

Thanks for all of your messages I really appreciate it.

I've decided to get a copy of my medical records for my own peace of mind, I'm also today going to write a letter to the immunologist asking him to look into what happened in 2010 and if it could be related to what has happened since, if nothing more than to enable me to put it to bed.

Thanks again for all of your help everyone and take care.

Lots of love

Claire xxx

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Hi everyone

Thought I'd give you an update.... I put a 5 page letter in the post to the Immunology Consultant yesterday asking him to investigate what actually happened when I was in hospital in 2010 and the reason for the difference in all 3 scans to ask if there was a possibility of a small bleed, lets hope they do investigate it as it will help clear things up a bit for me.

The pulsating feeling in my head is becoming more frequent, I'm trying not to worry about it too much and am just writing down every time it happens as its not only when I'm up and about but when I'm sat down relaxing. Today I've felt very tired... fell asleep with the laptop on me earlier for 2 and a half hours... unlike me and been feeling a bit drunky again so just guna write all that down too.

Next Tuesday I've got an outpatient appointment at the hospital with the Consultant who assessed me when I was admitted a few weeks ago... the one who sent me home with a paper bag to breathe in and out of lol!! I'm going to take the same letter that I've written to the Immunologist with me and get him to read it too, I think I remember him saying that he deals with alot of vascular issues so hoping he may be able to shed some light on things. Is there anything specifically you guys think I should ask without him thinking I'm completely nuts?

Many Thanks

Claire xxxxx

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Hi Claire,

Just be honest when you go. Tell it like it is, how you feel, what your worries are. Don't dress it up just because he's a consultant or because you feel daft or guilty. You have to be honest to get an honest answer. Take your letter and what you have been writing down - print some of these pages off if you have to - just make sure you get your message across. In order for him to be able to properly diagnose you, your part of the bargain is to give him a fair chance by giving it to him straight and in full. If you can't remember everything or trust yourself to say everything you want to because you are nervous or don't feel you can articulate it properly- write it all down, including any questions you wwant answering, before you go and give it to him when you get there.

He's the one that gave you the paper bag - is it him that's nuts?

Let us know how you get on

Good luck

Macca

Edited by Macca
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Hi Claire- I am Mary B

Welcome I am so sorry you are going through all of this. I have fibro, dealing with it for over 15 years.. I have a website I am going to attach here I hope it works. If not look me up on facebook for the link. I need a nap really really bad but I will get back to you. Maryb

Fibromyalgia Network

Sorry I could not remember how to get that infomation to you

later I will

Keep a diary -typed-

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