I had my MRI first. Results came in then I was referred for EMG. Don’t get bogged down with what order it all comes in, as long as they all get done. NightOwl is right. You will forever wonder what the results might be if you didn’t have an MRI so it’s positive step forward in sorting you out.
I have booked a GP appointment for Thursday afternoon. I am hoping to find out the results of the blood work that was done at the hospital and to find out if the MRI decision was a recommendation from my GP or whether the consultant neurologist advised of it. I can’t believe it’s been over a week and the neurologist has still not written to my GP.
To complicate matters further, the computer system my GP uses is not linked to the one used by the hospital in Glasgow, so neither entity can check/see what has already been done. I really, really wanted the EMG before the MRI. I don’t suppose it’s worth asking to get them both done simultaneously? Or will I now need to wait for the MRI results and then go through the same prices for EMG referral?
I am going to need to request to extend my line from work. Simply I cannot cope with work just now. My sleep is so bad that I am actually semi-conscious some of the time and having all kinds of dreadful nightmares. The waiting is torture and the haphazardness between GP and hospital is making me even more stressed. When the neurologist called me yesterday, he said ‘you may remember you saw me 2 weeks ago’ when in actual fact it was 6 days ago. Sounds like a trivial mistake but I feel like I could do without it. Fears of MND are starting to creep in again as well, even though the neurologist told me not to concern myself with that disease at the appointment.
Hi Neil1689, you are panicking and you are not doing yourself any favours. I waited 3 months for my neuro to write to my gp after my consultation. 1 week is nothing. The problem is. For us as individuals, what we are going through is EVERYTHING. It’s all consuming. What you need to remember is for the neurologist that sees you, you are simply one of probably hundreds under their care and in the grand scheme of things we are half an hour of their time then they move into the next person.
The only comparison I can make is, one teacher and a class of 30 students. We remember the teachers name and hair colour and the things they say to us as there is only one of them. The teacher on the other hand has 30 names to remember etc etc so don’t be too upset that the neuro couldn’t remember exactly how long it was that he saw you.
Yes, go to the GP and ask about blood test results. Be prepared that they might not be back though. I totally get that it’s hard to be patient when your health is on the line. With regards to whether you have the EMG or MRI first, why does it matter so much to you? What are you fearing? Yes of course the results but I don’t see it makes any odds what comes first as they are separate tests. EMG is to test more specifically for MND but also detects isolated nerve and muscle activity damage. Your neuro has told you not to worry about MND but is clearly being thorough. Tell me if im wrong but I don’t think you would have settled for the neuro to merely tell you you don’t have MND as it possibly would have played on your mind regardless so in that sense it’s brilliant that your having he test as it will put your mind at rest and that particular concern can be put to bed. I only say that as your previous post above suggest your neuro was near in positive you don’t have MND.
The MRI will test for any brain inflammation, namely MS lesions but of course it can pick up all sorts of things. An MRI will not rule out MND and likewise an EMG will not rule out MS so it’s really great that you have a neurologist who is willing to give you all the tests to get to the bottom of what’s going on. What order they come in is not relevant at all. Of course both tests may grow up nothing in which case there are other tests they can do depending on the results. It’s one long waiting game but it’s all a start and that’s better then suffering with no help at all. Lots of luck to you.
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Apologies for all the typo errors, writing on a iPhone and have fat fingers 
Excellent post. No need to apologise.
Neil, Cherry Tree has given very good advice. Try to stop worrying about MND. And MS for that matter. What will be will be. All the worrying in the world won’t make any difference to your diagnosis and will just make you more miserable.
Rely instead on the fact that your neuro is covering all the bases.
Best of luck
Sue
The EMG had been recommended to try to see what kind of nerve damage had occurred in the foot, not specifically a test for anything, but to confirm the neuro’s thoughts of ‘isolated nerve damage’.
My foot is my main concern. If I can have clarity that neither MS or MND caused the foot drop then I would feel 1 million times better about everything. So this is why I was so keen to get that first. I just feel if I could get a rational explanation for the foot drop then everything else would be astronomically in my favour.
And you are right. He pretty much ruled out MND from the physical exam. I can still recall his exact words ‘I see no obvious signs of MND whatsoever, so you don’t need to worry about that’. But when I think about it, how can he determine that from one physical exam of my foot and wrist? I suspect he was trying to put my mind at rest whilst obviously choosing his words very carefully. Early onset of the disease could explain why there are no ‘obvious’ symptoms.
in saying that, I doubt the foot would be improving if it was MND, bearing in mind that I now have full use of the muscles in the underside of the foot after feeling nothing at all there for weeks. Highly unlikely that would happen with MND where it’s pretty much normally downhill all the way.
Okay, you are all probably right, I’m being a hypochondriac. I’m just so used to bad things happening to me in life. Whenever there is a 50/50 chance of something happening to me, it always seems to be worst case scenario that hits me and perhaps this is why I am reacting the way I am here. God this sounds so ‘woe is me’. I apologise for this.
I will try to be a bit more positive now. Will see what the GP thinks on Thursday and report back here at HQ
Neil x
Thanks Sue x
A bolt out the blue. The hospital have just called me. Seemingly they have a ‘cancellation’ and will be able to do my MRI tonight! I am so nervous I can barely type this. 6.15 tonight.
Best of luck tonight. Not sure if you’ve ever had an MRI before for anything but there’s nothing to worry about. If you don’t know already, check with the radiologist what parts of the body are being scanned, brain, brain and cervical spine, brain and full spine? If they are doing the whole thing, likely to take about 45 minutes plus it’s always good for the patient to know exactly what areas they are looking at. Sending positive thoughts to you.
So that’s it done. Never had an MRI in my life. It was just the brain and took about 15 minutes. These last couple of days I have noticed real fatigue in my arms, doing simple things like brushing my teeth and eating a cereal. Basically anytime I lift my arms from a resting position. And yet…the pain I had in my wrist has gone and the cramping/cramp feeling has left me and the pins and needles feeling has mostly gone too. Replaced with chronic anxiety. I just dunno what the hell is going on, but I am sure my arms should not be tired from simply brushing my teeth!
Reading through this thread, it seems to me that there are several things that are making life very tough at the moment.
The first is the strange neurological goings-on. The investigation is all in hand on that one, so nothing further for you to do.
The second is your anxiety, which clearly is making your life a misery. And that is one I think it would be a good idea to share very frankly with your GP if you have not done this already. Quite honestly, you are clearly suffering more than is typical for someone in your shoes health-wise (as far I understand your position, anyway - which isn’t far, of course.) I do not think you should accept this level of emotional distress as something you just have to live with: help is available from your GP for dealing with crippling anxiety that is blighting your life, so please do not be afraid to ask for it.
The third point is linked to the second: the sooner you get yourself back to work the better for your peace of mind. But you can’t do that while you are so hobbled by anxiety that you cannot function, obviously. So that’s part of the reason for dealing with the anxiety: that would make life less of a struggle for you, and also help you to play yourself back into the normal world, and there is nothing like that for steadying the ship.
I am sorry that you hare having such a horrid time and hope that you reach calmer waters soon.
Alison
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Neil1689, at least the MRI part is all done and dusted. Don’t be surprised or too disheartened if you don’t get your results for a good wee while. I’d say at this point if you get the results before Christmas then that’s a bonus!!
Hi everyone. So went to see the GP yesterday and told her about the crippling anxiety I have been suffering. She’s very non-committal though she did say MND is highly unlikely if the neuro told you not to worry about it. Seemingly they will have a good idea what they are looking for even at physical stage. She was non-commital in MS too, stating that we just have to wait for the MRI results to come back and take it from there. Which is probably fair enough, not much else I can do, I’m probably lucky to have got as far with it as I have already. She signed me off work for another 2 weeks and gave me sleeping pills for that fortnight. What a relief last night to actually get some sleep lasting more than 2-3 hours and without the presence of a nightmare. I feel much more ‘alive’ today even if my arms are still very fatigued and twitching of the body continues. I’m not sure how to describe these twitches. I sat and watched my legs for a good few minutes last night and there is nothing visible. Feels more like a tingle or ripple in the vein. God only knows. Hope everybody is doing well today. Neil x
Hi Neil I’m glad you’ve had a decent nights sleep. That will help enormously over the next couple of weeks. And it’s good that your GP agreed that worrying about MND seems unnecessary given what the neurologist told you. Hopefully you’ll get some reliable answers soon. Sue
Unbelievable. Just unbelievable. Was without my phone on me for about 20 mins today and that’s when my GP called. Phoned back and she’s away for the day. According to reception ‘no other doctors are present’ in the surgery. Says she will pass on my details to the doctor covering appointments this afternoon, but they have already started now so it’s gonna be tomorrow at the earliest before I find out what this was about. Only been 5 days since my MRI, of which only 3 of them have been working days. Seems very quick.
Hi Neil, my stress and anxiety seems just as terrifying as yours. They rang me the day after with my mri results, with patches of inflammation so hopefully no news is good news. Our anxiety will not be helping with our symptoms. I too was worried about mnd I still am although I’ve been told not too. I’ve been put on some sleeping tablets, I’ve never ever been a fan of medication now I just wish I could have diazepam for breakfast. Let us know what happens, wishing you a calm evening x
Dear Neil, very best wishes for tomorrow. I have been following this thread too. The insomnia and anxiety, I completely understand. Be kind to yourself and gather those you love around you. This forum is helpful too. Eat well and take time out. Focus on the things that you like. Again, good luck. ali
Yeah the anxiety and stress is something else. Never felt anything like this and I thought I had been through some rough times in my life. This forum has been invaluable to me on this journey, everyone already knows how appreciative I am, but no harm in saying so once again! Will report back tomorrow if I can finally get hold of what my GP was calling me for.
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GP was phoning to say no results posted as yet.
Crikey Neil, couldn’t the receptionist have told you that? Duh, of course not. Only a doctor can tell you they have no news.
I do hope you get to find out something positive soon. Do you have any fingernails left? Or any hair left on your head? (Or any other part of your anatomy if you are headhair challenged!)
Sue