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Dec 2013
1:59pm, 30 Dec 2013
2,255 posts
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Curly45
Right so intrinsic factor test was negative. Am waiting to speak to the gp about what that means.
Day two of taking 1000mg of B12, no difference so far but then that isn't a surprise. Hope to feel less tired at least.
How are you feeling Hann?
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Dec 2013
8:14pm, 30 Dec 2013
2,256 posts
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Curly45
Starting to feel like I need House on my case.
Must find time to call the neurologist tomorrow and find out about my mri results.
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Dec 2013
8:23pm, 30 Dec 2013
105 posts
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FenlandRunner
Hope you start feeling better soon, Curly
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Dec 2013
8:38pm, 30 Dec 2013
3,969 posts
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Garfield
Yes, hope you feel better soon Curly.
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Dec 2013
8:43pm, 30 Dec 2013
17,066 posts
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JohnnyO
Negative IF just means you haven't got pernicious anaemia (unless the implication of negative is that there is none present, in which case you have got PA, but this would not be the normal meaning of negative when talking of a test, rather than a value).
In my opinion, PA always sounded a bit of a long-shot. You would have developed anaemia before neurological symptoms (will a GP or physician confirm this?), and the onset seemed far too acute. Taking B12 wont do any harm, but I doubt it will make a big difference if your result was only borderline low.
It is very poor that the MRI isn't back yet. It would have been reported on within a day or two, so any delay now is just procedural, which is even worse in the context of neurological diseases where full recover is often dependant on early therapy. I really wouldn't take no for an answer here, but given the holidays, there might not even be anyone around to complain to.
I would also take issue with the suggestion that a diagnosis of ME or MS is being 'fobbed off'. These are very real diseases, and just because a specific test or therapy is not available does not make them any less significant for the sufferers.
(This is not to say that I think these are necessarily likely diagnoses for you).
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Dec 2013
8:56pm, 30 Dec 2013
2,257 posts
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Curly45
I was waiting for the neurologist to discuss my case with others previously, and am now trying to arrange an appointment to discuss the findings.
I get so confused about what the procedure is and who I should talk to so that probably makes the delays worse.
What I really want is someone to take charge of my treatment as I'm just not well enough to keep on top of it myself at the moment. No idea who this would be though.
I do agree about ms/cfs of course they are real conditions but the reference to being fobbed off is because patients are often told they have this as a lazy diagnosis rather than doctors doing proper investigations...
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Dec 2013
8:58pm, 30 Dec 2013
6,882 posts
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geordiegirl
Curly I've not read the whole of your thread but wanted to wish you well and hope you get some answers soon.
I spent my life from 14 to 36 suffering at times quite horrendous abdominal pain with various diagnosis, but it was endometriosis. Quite an invisible disease/illness and somedays I'd be brilliant but then I'd be knocked down and unable to even walk to the end of my drive (and we didnt live in a house with a long drive)
Key is to keep at the medical profession to find the cause and hopefully a cure or something to at least make it better. I have spat my dummy out at GP/hospital and refused to be seen by junior staff (sorry to med prof's here but when you need answers you need to be strong) I have refused medication that I didnt believe would help me (and I was right) but eventually got a proper consultant able to deal with my condition and treat me correctly, more importantly he actually had the same mindset as me that I could have been messed about for much longer had I not been so determined. My one regret is not standing up for myself sooner - and the consequence is I wasn't able to have kids but I try to be a good auntie instead.
I had my last op 6yrs ago and while it all ended quite traumatic I am through it and for the first time in my life I am living a 'normal' life, I can plan to go out, buy clothes knowing they will fit me today and when I want to wear them, I can go for a run and know I won't be stuck down with pain miles from home. I still have off days but nothing like I'm used too.
All the best for 2014 I hope you get answers and treatment, I'm only an fmail away if you want to chat. xx
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Dec 2013
9:16pm, 30 Dec 2013
5,998 posts
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LouLou
I agree with JohnnyO - I would expect neurological complications if B12 deficiency to be more gradual in onset - sounds quite sudden in your case. I understand that about 25% can have neuro symptoms without anaemia but from what I've read neurological symptoms associated with B12 deficiency are very rare.
I would suggest it might be worth wait for your neurology appointment, sometimes seeing too many specialists can lead to no one taking a lead.
I can only imagine how frustrating it must be to feel unwell without a diagnosis, I don't like uncertainty in my own life but deal with it a lot in work. I've only read some of the thread so apologies if I've repeated something. Hope you reach a diagnosis and management plan soon.
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Dec 2013
8:03am, 31 Dec 2013
2,258 posts
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Curly45
Wow Gordiegirl that sounds horrendous. Its good to hear you are finally recovering and starting to live a normal life.
Thanks Lou. I did think it was a bit weird for my symptoms to be down to b12, but even if I can deal with the exhaustion that would be good, then I could ignore the nerve pain and run a bit.
9 miles run in December. Lowest ever month. Depressing.
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Dec 2013
9:10am, 31 Dec 2013
7,215 posts
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Chicken Licken
Curly just read back - sounds like you have been treated terribly - advise moving drs as soon as you can!
I had an awful experience with my own GP years ago - who told me it was all in my head, 6 years I felt so unwell ...... So please document everything, as you start to feel like you're going mad.
I ended up having emergency surgery - total hysterectomy at 30, and blood transfusions following that - I was so upset, and angry whoopsie Dr not all in my head obviously!
Hope you get some answers if not - keep plugging away there's only one of you, you need to be treated appropriately
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Jul 2024