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All tests negative but I still suspect MS

Hi,

I am a 42 year old female with various symptoms similar to MS.

I have had numbness and tingling in feet and legs constantly for nearly two years, with intermitant tingling of my face (lips, nose, cheeks and tongue) and hands. Constipation for 4 years, and recently waves of tiredness with heavy arms and legs, lightheadedness and hot flushes. Frequent/urgent urination is controlled by giving up caffine. Every day I take magnesium hydroxide, psyillium husks, aloe vera, prune and senna tablets and dried apricots and prunes which makes the constipation just bearable.

I have had a number of tests for the constipation - all clear but for lax anal tone. I had a MRI of my brain and cervial spine over a year ago which was clear. I saw a neurologist who did suspect MS at first but after a clear MRI of my spine, discharged me. I am now back under the GPs care who constantly tells me that they may never know the cause of my symptoms.

Due to my recent tiredness and lightheadness I have researched getting an MRI done privately at a cost of £658. The scanner is a 3 Tesla, whereas most nhs hospitals are 1.5 - I am lead to believe. I have asked my GP for a referal but so far they have refused to sign the form due to the two clear scans. I now have an appointment in 2 weeks and I will ask again.

I have printed off several copies of various MS sites detailing that first MRI scans can be clear, to take with me, but still I am expecting her to refuse to sign the form.

Can anyone out there please give me some advice. Am I being neurotic to still suspect MS when all tests are negative? I am quite prepared to ‘waste’ my money on the private scan just for peace of mind.

Thank you

this sounds like a stressful situation. you are completely right to ask your GP for help in the face of ongoing and unexplained symptoms that are clearly distressing for you. And if you can afford to go privately, then I don’t think its money wasted. Peace of mind is a very valuable comodity if you ask me!

I’m not sure what I’d do in your position, but I’d maybe think about:

(a) ask your gp to recap with you all the things they’ve previously ruled out, just to make sure they’re not missing anything obvious like vitamin defficiencies. I’m sure you’ve probably had loads of tests, but sometimes its difficult to remember exactly which ones. Also, since you mention you are in your early 40s and experiencing hot-flushes as one of your symptoms, you could maybe request additional tests for hormonal changes / look into possibility of peri-menepause. I don’t mean to be dismissive in any way by suggesting this, but it just may be one of those things you could get ‘ruled out’ in order to help persuade your GP to reassess your request for MRI scan referal.

(b) you could ask to see a different GP for a second opinion (you are completely within your rights to do this, I think it happens reasonably often)… someone looking at it all from a new perspective might think differently about signing the referal for 2nd MRI, or might be able to suggest different lines of inquiry.

(c) since MS is not always disgnosed soley on the basis of MRIs, could you ask for other tests, such as a basic neurological exam (I think GPs can check reflexes & certain other stuff in their own practice, so it’s not asking the earh for a quick check); or you could request to be referred for a more thorough physical exam from neurologist

(c) If you are not happy with NHS sevices & are considering going privately for an MRI,could you consider seeing a GP privately also? I’ve no experience of this myself, but I do know that some private healthcare providers offer GP surgeries, they will probably take a similar approach re tests etc but since you are paying them for their time they might spend more time with you (if that makes sense) (rather than being rushed in and out as can sometimes happen in NHS)… maybe more time to discuss all your symptoms / concerns?

(d) consider what you would do next if second set of MRIs came back clear? would your mind be put at rest or would want further MRIs down the line (I’m not saying you shouldn’t do that, its more about cost-considerations… could you continue to pay for private tests on an ongoing basis?)

Maybe some other people can also help with this one

hope you find some answers soon x

I agree with anon above that it may be worth seeing a different GP at your practice, if only to sign the referal for the private MRI. It seems a bit daft to deny you that seeing as you are willing to pay. Or maybe ask for a private neuro appointment, with an MS specialist? MS CAN be diagnosed with clear MRI’s if the neuro is truly confident, following other tests/exams, but these need to be done by a specialist and NOT a GP. Also, you said ‘clear MRI’ of your spine. Have you had a brain MRI? If not, maybe you could/should ask, ‘why not’?

Good luck, and let us know how you get on xx

Hi, thanks for your reply.

Over the years I have had various blood test, scans etc and I have done a home menopause test which was negative.

The neuro did do a full examination and only found ‘increased tone in my upper arm’. He did mention I had a slight tremor but not sure if that was nerves or not - I have it occasionally but not enough to mention to the GP. The mri did show degeneration of my spine and a herniated disc but he said this did not impact on my spinal cord so was not the cause of my symptoms. There was also a ‘spot’ on my brain but he said it was nothing and that he even had one! He did mention comparing these scans with future scans but then said it could be stress and discharged me.

If it is stress would I feel these symptoms all the time, even when I am not stressed? - my feet were still tingling laying on a lilo in the swimming pool while on holiday, I was not stressed then!!

I am not rich by any means and the cost of the private scan will go on a credit card, any more costs I don’t think I can justify.

If the second scan did come up negative, I would have to just ‘shut up and get on with it!’ I do apreciate that the nhs has run out of sympathy with me which is why I am not asking the nhs to do the second scan.

Are there many people out there who have had clear mri’s but have gone on to have developed lesions on another mri?

Is the 3 Tesla mri better that the 1.5?

The gp says they may never know what is causing my symptoms, so are there people living with these symtoms and never getting a diagnosis?

Thank you x

so sorry you are having such a horrible time. I really relate to feeling like the NHS has ‘run out of sympathy’ and the fear that yo will just be expected to ‘shut up and get on with it’. to be honest, those are the things that I have found most difficult, probably even ore difficult than the prospect of actually getting a diagnosis.

really sorry things are so difficult at the moment, wish there was more I could say to help xxx

Hi again,

Yes there are plenty of people who have gone on to show lesions on further scans. I am one of them. It was over ten years for me between scans however, and even then, there was some debate as to what was the cause, as there were other things going on too.

Try the second opinion if you are happy to pay for the scan, or private neuro (cheaper than paying for a scan, and if he suggested one, you can ask if you could have it on the NHS). Just be prepared that it may not give you any firm answers in either case!

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Hi, you know, I never understand why after one set of tests come back normal, a neuro discharges a patient.

It can take many more tests and symptoms, before a diagnosis is found.

I had PPMS like symptoms, but all tests came back normal, over a period of many years.

I`ve seen 14 neuros in as many years, and not one of them mentioned discharging me. They were all interested in trying to find an answer.

i am still seen annually, even though MS was discounted last year.

I have a loose diagnosis of spastic paraparesis/cause unknown. So they still dont know what I have got…only what i haven`t got.

You are still having lots of problems, so why arent they keeping an eye on you?

You are definitely not neurotic…not at all!

If it was me, I wouldnt think having a private MRI a good idea really. Maybe you could ask for a second opinion. ask your GP about that, eh?

pollxx

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Thanks for all your replies.

I have researched the internet over the months about MS but never thought to ask the people who actually have it! You have been a great support . All your cases do not completly fit in with what the various sites say. It appears none of it is black and white - only grey (with more that 50 shades!!).

Thank you for all your help.

xx

More like a million shades!! lol xx

I think the only thing that worries me here is the fact that you have been put in a position where grasping at straws means you are even considering spending £658 on a scan that may come back with the same as before x

We are all different as you say but I for one also seriously considered this option early on x I’m glad I didn’t now as looking back a ‘label’ really doesn’t make much difference in the long run for most people (unless you are suitable for DMD’s of course).

I think you should go back to your GP - whether they like it or not they have a duty of care! and nobody should ever be made to feel that they are a nuisance!! EVER!!!

If I were you I would consider the option Hunny mentioned - first pay £200ish for a private neuro consultation before the scan maybe?

The other thing I was told is that they all prefer to see how these things develop/evolve over time - once they have ruled out the ‘life threatening’ things like tumours/stroke etc they tend to sit cak as they view MS as a ‘chronic’ disease

Sometimes they dn’t actually TELL you this so it comes across as them being dismissive when you are the one suffering day in day out

I would like I say get back to the GP - and keep going back - until they give you something like Gabapebtin or Baclofen to at least help with your symptoms!!! So feel for you! xxxxjenxxxx

PS Find out for definite whether the scans were done on a 1.5T - as many many NHS hospitals have 3T now - mine has I know xx

Hi I have had all symptoms, I had feelings of a fuzzy head dizziness, I got ready regardless left for work & half way down the road I felt an imbalance carried on slowly felt dizzy as though I might fall, I then started to panic, phoned my husband who said to go home, my home was about 500yrds but to me it was like 5 miles I struggled as it was almost as though I had drunk loads & a big struggle to get home bearing in mind it’s 7:30am, got home husband & daughter took me to A&E I was rushed straight through as I was tach cardi, moving forward I have had mri ct neck scan & electrodes on head all clear, done research was convinced it’s caffeine causing all my symptoms hence haven’t had any felt great, now a year & half on no caffeine symptoms are returning, along with terrible exhaustion, I am now convinced this must be ms.