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Halle

Hi all, I am new to this forum and it seems I may not have reached out far enough for replies to my first post. I have had a reply from one person who kindly advised on his experience and thoughts so I would now like to just get some more views from other persons.

In the past 7 months 3 different GP’s have indicated I have MS symptoms. However, the Neurologist I am under has done two MRI’s, one on thoracic and cervical spine, and one on brain, and as they came back normal (well some degenerative changes seen but considered age related), he has advised that I do not have MS. When I asked if he could do a nerve conduction test as I have weakness in hands and legs with burning in various limbs, he said there was no need as the MRI’s nowadays are good enough to detect MS on the first scans.

I informed the Neurologist that I had been on MS site and spoken with GP’s and it seems that it can take years to detect MS and that it does not always show lesions on scans first time. The Neurologist advised that GP’s are not experts in MS and the MS Society are misleading people. I do not for one minute agree with what the Neurologist said but wondered if anyone else had experienced this. By the way after two consultations the Neurologist has now diagnosed likely FND and possible Fibromyalgia, and has now referred me to a Rheumatologist but will monitor my progress due to the weakness in my left leg!

I am considering a second opinion as the Neurologist specialises in eplilepsy and has experience with general neurology but he is not an MS specialist…

Has anyone on this site ever requested a second opinion?

Hello Halle

Yes, many people have sought second opinions. And you still could. In particular, if you can afford it, you could try and find a private MS specialist from whom you could seek an opinion.

However, two MRIs including spine and brain, showing no demyelinating lesions is usually enough evidence that a person does not have MS.

Any neurologist can diagnose MS from a neurological exam and MRI scans, even if they are not MS specialists. A GP cannot diagnose MS regardless of their experience or evidence provided. It can take years for people to have MS diagnosed, but if they’ve had neurological exams and MRIs showing absolutely no demyelination, it’s generally accepted that they won’t have MS.

It is common for people to have FND diagnosed when they’ve experienced symptoms similar to those of MS. Have a look at What Is FND - FND Hope International It is a real illness, with very real symptoms. As is fibromyalgia.

I do hope you can either get a second opinion which eases your worries, or accept the opinion of the neurologist you’ve seen.

Best wishes.

Sue

1 Like

hi halle

i would try to answer your questions but ms has nicked my brain!

it comes home occasionally and then i’ll make your brain hurt with my clever words (!!!)

but for now you have a sensible reply from sssue.

so now you have met two of us.

carole x

Hi Halle,

Welcome to the forum :slight_smile:

I’m quite new on here myself and find there’s lots of lovely people on here offering support and advice.

I have PPMS and I also have Fibromyalgia and unfortunately they both have similar symptoms - sometimes I don’t know which one is doing what to me :-/

I would agree with Carole that Sue has given you a sensible reply.

I myself have changed Consultants on my own request (long painful story) it led to another set of scans being done and having a second opinion with it - the scans showed the same lesions and demyelination but this time I got the correct, confirmed diagnosis.

Do what you feel is best for you.

Take Care.

Twinkle Toes x

Hi Sue, thanks for your feedback. to be honest I don’t really think it is MS but it does get confusing with conflicting stories. The only thing I do know is my suffering like many other people on here is endless and horrible.

Take care

Hi Carole,

Nice to meet you. Yes it is a very sensible reply from Sue and much appreciated.

I hope your MS gives your brain back soon.

Take care xx

Hi Twinkle Toes,

It is really nice to be able to speak to people who themselves have some idea of what I am going through and appreciate how frustrating it is with any illness/disease we suffer from.

I must admit that there has been any times when I have just thought I might be going crazy but it is reassuring that FND and Fibromyalgia are very real.

I do tend to normally trust the opinions of all medical persons, but with my GP’s questioning what the Neurologist has said has affected this trust. Also there has been suggestions made that the diagnosis of FND and Fybromyalgia is sometimes the easiest thing to say and can result in other tests not being done.

Take care xx

Hi Halle,

This forum is a great place to find out information about MS and it’s symptoms and also other conditions that can be associated with it too, or not as the case may be sometimes.

The members on here totally understand what others are going through and they ‘get’ what people mean, and there’s always somebody around to offer support and advice.

Oh yes, FND and Fibromyalgia are very real, when I got diagnosed with my Fibro I was told it was called the ‘nuisance’ disease because it’s a ‘bloody nuisance’ and the Consultant was so right :-/

Of course you trust the opinions of the medical people as that’s what we’re told to do and should do, but just sometimes they can be wrong (and I should know) but at the end of the day you have to keep pushing to get tests done, if only to rule something out and not necessarily to confirm a diagnosis.

Take Care.

Twinkle Toes x

Thank you Twinkle Toes xx