Jumping the Gun

Hi all, cut long story short had to go back docs today, im awaiting a diagnosis after seeing Neuro on the 10th Jan, im waiting for MRI scan dates for brain an spinal cord. I’ve had all bloods done and all came back negnative. While I was there I told her about how id been feeling last few daya and syptoms id been experiencing. We talked and I said I was sure my sypmtoms were due to vit deficientcys as I have crohns and asked to have them repeated BUT she said no point as my vits levels are Normal I asked her if the Neuro knew wat was wrong and if he had any suggestions and she said she had spoke to him and knew him fairly well and had great faith in him and that he had treated her mum for MND and I asked her what she thought and what he thought was going on with me and she calmly said "he thinks MS and if he thinks that then I am inclined to think so too I was bit emotional an shed a few tears but thanked her for being there when I needed her. If your Neuro told your doctor he thought you had ms before the MRIs were done what’s the likely hood he is right?

Hi Tracie

You are bound to be emotional. I was introduced to the possibility of ms by a doctor who was in a hurry and no inter personal skills. It was unexpected after being told I just had depression and believing I was imagining it all. It has helped me to speak to a friend and am now getting used to the idea. This forum has been very helpful, and the neuro will have an idea as this is his speciality but as yet has no proof, but if you read many of the posts here you’ll see it isn’t the end of the world.

Good luck

Min x

When a neuro sees a patient, they come up with a “working diagnosis” and this is what they base their decision about what tests to order. Sometimes the tests will confirm the working diagnosis, sometimes they will provide some evidence but not enough to diagnose and sometimes they will rule out the working diagnosis and the neuro has to think again.

We’ve seen people on here get all three outcomes and it’s often unpredictable as to how it will work out. If your neuro is experienced and an MS specialist, then his working diagnosis of MS may be more accurate than the norm, but they are never 100% so do try and keep an open mind.

Hopefully you’ll find out soon.

Karen x

My GP sent me to a neuro with suspected MS, after the neuro examined me she too agreed, I had MRI, CT scan, chest x-ray, lots of blood tests, evoked potentials tests, to which all came back normal. So there’s still the chance this could happen to you, I know it is a worrying time though. I’m thinking I’m going to be put as funtional nerve disorder But I have read up about it a lot, fair enough the symptoms are exactly the same But one thing I read up on the diagnosis section was that although there is weakness found during exam there is no change found to reflexes, well, I have none in my feet! I’m expecting them to still say this is what I have. There are lots of other things with very similar symptoms that mimic MS it’s just a matter of playing the waiting game for all tests I’m afraid. Good luck with it all. Mrs C xx

Hi and thanks I now have my MRI scans appointment date and don’t have to wait too long Weds 13th Feb MRI BRAIN & CERVICAL CORD MRI DIFFUSION WEIGHTED. Both at 4.50pm. But as both at same time is it one thing or 2 separate things as written in letter? Plz An letter also says about injection that occasionally may give injection of contrast medium via vein in arm. But it doesn’t say I will definitely having injection so I don’t know? Does anyone else kno? Plz. Thanks

It’s all the same appointment - there are different types of scan which look for different things and they are done one after the other. The injection is “contrast agent”, normally gadolinium. It cannot normally pass the blood brain barrier so shows up as bright white around the brain, but not inside the brain (if the barrier is intact). If the barrier is breached, the gadolinium passes and shows up as white spots where they shouldn’t be. In MS, this is where there is new lesions / “active” lesions are forming. Diffusion weighted scans are looking at the flow of water in the brain. It is slower than it should be around lesions and can also show where there are active lesions.

I’m not sure what the criteria are for when they do and don’t use gadolinium. It used to be just that the neuro had asked for it, but quite a few people have said on here recently that they haven’t had it when the neuro asked for it. I can only assume that it’s because diffusion weighted imaging has become more commonplace and it can show up active lesions without any injection. Perhaps if the diffusion weighted images show something suspicious, they use the gadolinium to double check?? If you get a chance will you ask for me please?! :slight_smile:

Karen x

Hi Karen :slight_smile: yes I will thanks

Hi Karen (Rizzo) an everyone Had my MRIs done today Karen you asked me in earlier post above if they use the gadolinium if they see something suspicious in MRI, well the radiologist came into waiting area to ask me health questions and I asked him if I was going to have the dye injection and he said NO so I asked him why an ed he response was your consultant hasn’t asked for it because we dont know what we are looking for yet and if needed I will have to go back to have MRI with dye. Well I personally think that’s a waste of NHS money to repeat a procedure again when they cud do it in one go. UNLESS the contrast MRI cud hide a different problem/condition and until they kno it’s most likely ms then they dont do they dye part, ruling out other leisons that you cud have from lymes or migraine first? What your thoughts on this as the radiologist said I may have to go back for contrast MRI if needed.

Thank you so much for asking for me! So your consultant hadn’t put it on the form? I wonder what would have happened (and what he would have said) if it was on the form? If anyone’s reading this and they have a scan coming up, please ask about it and let us know what happens - I’d love to get to the bottom of this!

Contrast doesn’t hide anything. As far as I know, the worst thing it can be (diagnostically) is a waste of time, which of course means a waste of money, and the NHS is not exactly rich. However, I agree with you - it seems really stupid to get people back again and do a whole extra scanning session if they are being investigated for anything that contrast might just help. I bet some management consultant has deemed it more cost effective not to do it :frowning: