ClaireyCro

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

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

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

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

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

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

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