Tagged: Blood tests & MRI
19 March 2017 at 10:59 am #54033
I’m new here although I have observed for some time! After 14 years of trying to find what is wrong with me, including two international trips to no avail, I have found myself at one of the London hospitals for evaluation by a 5th Gastroenterologist. I chose him because of his teaching videos online and hoped that maybe, after so many years of disappointment, he might be able to shed some light.
I had blood tests and an MRI 4.5 weeks ago and am so disappointed not to have heard anything since. Obviously my tests are negative and I’m unsure what to do next. I really have been through the most appalling experience in the last 14 years and this has taken up much of my twenties and into my thirties. I had little experience of ill health before this.
I ‘went funny’ after alcohol on an empty stomach in 2001, never felt anything like it before. This experience repeated itself after eating a number of times and then 9 months later, I developed a ‘virus’. The worst virus I’ve ever had that lasted 8 weeks and only stopped when a Gastroenterologist I paid to see gave me a drug to stop diarrhoea. No one in my family had it. I was so ill I couldn’t eat or sleep for 2 months. Yet no alarm bells rang despite asking for help. A number of tests revealed very little. The diarrhoea slowed, but nothing else changed. I have lived like this for 14 years.
I was so hopeful that maybe I might be going along the right track this time (maybe the pancreas) but I’ve heard nothing. The hospital is the RF. I just wondered if anyone who has gone through similar testing, perhaps at the same hospital, might offer some advice on timescales? I paid for a private appointment 5 months ago, had an NHS appointment with the same Consultant 7 weeks ago.
I can’t live like this indefinitely, 14 years is more than enough. I’ve hidden the impact on me for so many years. I have no medical support as I’m an anomaly and can’t find anyone like me, so there’s no support group for me to join. I hope you don’t mind me asking, I was trying to find anyone who has been through the same testing as me, and I think NET patients are probably the best people to ask!
Thank you so much in advance for any replies.
Emma19 March 2017 at 3:58 pm #54034
Goodness me Emma you have certainly been through the mill. I am sorry I cannot help you re all your symptoms but I wonder whether Nikie from the NPF could help you. You can contact her by email on: [email protected]. Somewhere there is a phone contact for her but I cannot find it at the moment. But if you contact the main phone number I am sure they would be able to help you.
I hope someone else can help you re the same symptoms.
Pat19 March 2017 at 4:47 pm #54036
I can only repeat what Pat has suggested. Contacting Nikie might be the way to go. Net symptoms are wide and varied and many people go for many years before they are diagnosed. However, there may be something else going on and I presume if you are at the Royal Free, they are a Net Centre and they would definitely have thought about diagnosing Nets. If your blood test was for Nets, it will generally take around 5 weeks to come back and as Nets are generally slow growing, the timings of appointments are not always as quick as we would like. You can always telephone the consultant’s secretary to see if the results are back yet and ask when your next appointment will be.
When you have the results of your MRI and blood test, then you can decide which way to go. Meanwhile, I wish you well and if you do get a diagnosis of Nets, please don’t hesitate to come back and let us know and we’ll support you as much as we are able.
Jenny20 March 2017 at 6:53 am #54038
Good morning Emma, good that you have found our forum, so a warm welcome. I have read your post, and I would say that you are being treated at the best place you possibly could be. The Royal Free has a specialist net centre, and you would be referred to them if it was found to be a NET, they also have a MDT, so your case would be discussed, but you could give them a ring this morning, [better than e mail] and say you are surprised that you haven’t heard anything from the Consultant who your appointment was with, and ask if a follow up appointment has been made to discuss the scan, and blood results, and I am sure this will put your mind at rest, Carole.
20 March 2017 at 10:36 am #54040
- This reply was modified 5 months ago by dabber.
Hello Pat, Jenny and Carole
Thanks so much for your advice and for your welcome. I did call the Secretary and left a voicemail. I didn’t want to pester, but at the same time I didn’t want to hear the ‘bad’ news that I’m at a dead end yet again! I’m not an anxious person at all, I’m desperate for an answer, whatever it is! I have emailed Nikie but appreciate she’s probably exceptionally busy.
I actually spoke to Nikie before Christmas, she was a ray of light at such an awful time. I visited a leading Gastroenterologist in Sydney in 2004 and then an Infectious Disease Consultant in America last March, having exhausted my options in the UK. It’s like being on a crazy fairground ride I just cannot get off, and it’s not due to a lack of trying! The waiting is the worst bit, for the light at the end of the tunnel to show itself, only to find out it isn’t there at all.
Thank you so much for the encouragement. I made the call, we’ll see what happens :0)
Emma21 March 2017 at 6:05 pm #54055
Hi Emma – when did you email me – have just checked my inbox and cannot see anything from you – even checked spam in case my filter was on overdrive !
Really good advice from the fab forum – would strongly recommend contacting the free – if you are having difficulties getting through – ask to be put through to the NET Nurses – they will certainly help in chasing through whats happening (as they’ll have direct access to the hospital systems) – more than happy to talk things through but not sure what more I can add at this point – until you get your results – beyond maybe helping you through this “wait” time.
Nikie21 March 2017 at 6:41 pm #54065
I emailed on 8th February which also had an email of 2nd December attached to it so assuming you didn’t get either? I will forward again. I chased the results yesterday with the Secretary of my Consultant. The waiting time is the worst, I don’t think there’s anything that can be done to help me, you’re right, it’s just wait and see! I’ve been here a million times only to be disappointed at the end. I’ll try calling them again tomorrow. In the meantime I’ll forward the emails again in the hope you get them (I’ll do it now, if you don’t get them let me know).
Emma :0)22 March 2017 at 2:58 pm #54105
HI Emma – yes emails received – very strange your february one didnt get to me but as the forum members know IT is a wonderful thing . . .when it works !!! Hang in there – and i’m here if you need to talk things through
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