An update but going nowhere fast...:-(

Hi All, I haven't posted here for a while and I was hoping to have some news by now but still no further along.  If you don't mind I'll summarise what has happened so far...

After being unwell since 2004, I was diagnosd with ME/CFS in 2008 and had to give up work as I just couldn't carry on and was under a lot of pressure from HR.

In 2010, after several requests, my doctor finally agreed to refer me to a neuro and I had an MRI which showed (January 2011) "subcortical white matter changes, two in particular.  Changes like this can somtimes be seen in people with very mild MS. However, just having two lesions on their own does not make a definitive diagnosis." and in a further letter (September 2011) "Somatosensory evoked potentials did not show an abnormality, but MRI scan has shown a couple of white matter changes which were consistent with demyelination. However it did not satisfy Barkoffs criteria. For that reason I did offer to do a lumbar puncture".

I was very confused because I couldn't find anything about (what turned out to be) the Barkhof criteria, which it transpires was superseded by the McDonald criteris years ago.

After calling several times about having my LP, I finally went to see the neuro in Feb 2012 and he changed his mind and sent me for another MRI (April 2012).

I've been chasing my results for weeks now and just received a letter this morning which was a copy of a letter to the consultant radiologist:-

"I am sorry to disturb you again. Would you please have another look at this womans scans. She has fatigue, pain in the neck and a lot of it which appears to be muscular skeletal in origin. However she did have white matter changes on the brain scan and a repeat scan has been performed on the 3T machine. I thought that the appearances are still not specific and I will be grateful if you will have a look to see whether you think that this satisfies Barkhof criteria to make the diagnosis".

My neuro's speciality is pain/migraines but I did notice that as of couple of months ago, he was listed on the society's website as an MS specialist.

I'm really worried because he's now not only trying to diagnose me with an outdated criteria but also seems to be asking the radiologist to diagnose me.

Sorry this is so long-winded, I just needed a good 'toot' today as this is really getting me down.





Hi Mags,

It's not long winded, so no apologies needed happy2

If I were in your shoes I'd definitely be getting onto my neuro and GP to find out what's going on!

If it's is out of your neuro's scope of speciality and he's in serious doubt then he should - in my opinion - be referring you to someone else, or at least be consulting with another neuro. But I'm not sure that he (or your GP) should have sent you a copy of that letter really because all it's done is made you doubt him. I'd feel the same way - I think my confidence in him would dwindle somewhat.

I'm sorry I've not been of any help. I think you need some clarification as to what and where he intends on going from here?

Debbie xx 


Another person who is suffering because they are not being seen by a competent specialist, time again is being wasted writing letters back and forth.

The sensible thing here for the neurologist is to refer you on to a specialist who is competent enough to know that barkhof criteria has been superceded and replaced. This is also one of the reasons I have cancelled my appointment with the neurologist I was referred to because he specialises in headaches.

If you were seen by a competent consultant it would save you from worrying unnecessarily which can result in your symptoms exarcebating.

I would try and hang on but if you need answers I don't see a reason why your GP or current neurologist can't refer you to somebody who will be able to better understand your results which "MAY" result in a diagnosis and appropriate treatment on time.

Thanks so much for the support guys.  I'm usually a very positive person but it just knocked me a bit.  When I saw him earlier in the year he did say that if there was nothing conclusive on the MRI he would refer me for a LP (again) and 'possibly' to see an MS specialist. 

I just get the feeling that he really wants to diagnose me himself and become a specialist in the area but all he seems to concentrate on in the letters to my GP are fatigue and pain (his speciality) and never mentions my walking, bowel/bladder issues, cognitive issues, dizzyness etc.  

I had a really rough few weeks in Feb.  My balance was all over the place and my walking was terrible.  I had a real problem taking a deep breath and felt really breathless and found that I was having difficulty driving at night (loss of balance while sitting down, if that makes any sense (?) and problems keeping my place on the road if oncoming cars had their lights on).  He said it was down to my being a smoker (half an ounce of tobacco a week), and just light sensitivity.

I spoke briefly to a member of the local MS group and she thinks he's wonderful but I don't know if that's for treatment after diagnosis or for diagnosis itself.

And here I am moaning again! blush

I guess I'll give it a few more weeks and see what the radiologist has to say & then have a word with my GP (he did say he was prepared to refer me to the MS specialist if I had no joy). I just want to feel better and get back to work again.

Thank you so much again for listening, it means so much to me. happy2

Hope you have a lovely, relaxing weekend and the sun is almost over the yardarm so cheers! thumbsup

Mags xx

Sorry you are not getting anywhere fast Mags. It does seem as if he wants to diagnose, so not sure why he wont? I agree with Rubina that you should get on to your GP and neuro and ask them for clarification. It does seem a bit tooing and froing of letters and emails and thats just not helpful for you!

Sending you a big ((hug)) and hoping you get some answers soon xx

I'd be concerned with anyone claiming to be an MS specialist who doesn't know the most recent diagnostic criteria letdown

I'd also be concerned with anyone relating number of lesions to severity of MS - the relationship is poor at best. (The location of lesions is more important than the number.)

To be fair, most neuros do not know how to read MRI so it's a good thing that he's requested more help from the radiologist. Whether the radiologist is up to date with the criteria is another thing though - if he's a general radiologist, he may not be.

Maybe wait and see what he does once the radiologist gets back to him? But if he's still dithering, then a second opinion is definitely warranted!

Karen x

Thanks Paula and big (((hugs))) to you too! happy2

Thank you too Karen. Yes, I'll see what the radiologist says, will chase them up next week (and the week after that probably! happy). 

Mags coolxx