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Saw MS Specialist Neurologist yesterday

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Hello All,


Well, I went off up to London again yesterday, on the 06.30 train !


Saw this Professor, an MS Specialst, and another Neurologist.


They once again went all through my history, test results, MRI and pointed out all the lesions where the expect to find them. Another full Neuro exam, the falling over tests, eye tests (discovered nystagmus that I hadn't had before)


Then they went off for a chat together, then they came back and did some more tests.


He (the Professor) talked about PPMS and SPMS, then said that I didn't meet the full criteria although it all pointed to MS. He then had another good look at the MRI lesions, of which there are many.


They took some more blood, and he said that he was testing for some extremely rare conditions, also looking at my copper levels ???? and for 'very long chain fatty acids'. I've had about 6 blood tests now, but I guess they didn't do these ones.


They are going to to VEP's (that they didn't do last time I was in)


Are going to review my MRI of brain and spine with some other specialists (no lesions in my spine so they are taking a closer look)


The whole thing took over 2 HOURS !! The clinic was heaving with people when I came out


I know that they must rule out everything, and I'm sure he said they are hoping to find something in the cord.


I feel very confused and a little unsettled by all this. I am just getting used to the M.S. DX, and now I feel as if the whole thing has been thrown in the washing machine. I feel dazed and a bit scared about the tests for these 'very rare' conditions, and frankly, feel as though I'm going backwards, instead of forwards.


Am to continue on my medications of Gabapentin and Baclofen, and keep up the physio, and go back in 3 months when VEP and bloods, plus the MRI review has been done.


Has anyone else gone through all this malark, even after a DX has been made, or are they just being ultra careful?




They are not brain lesions..........they are just bright ideas


"The truth is out there"

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Hi Scully


That was a marathon for you yesterday! It does sound like they are not entirely sure of the MS dx and they are keen to rule out anything else that could be causing your problems. They are certainly being thorough! It may be that you will keep the MS dx afterall, eventhough you are not completely fitting their strict criteria. Humans vary enormously through this disease process, so I wouldn't be surprised if they end up sticking with the original. Try not to worry too much. The extra tests are to rule out other things, which will be a good thing to know.


Chin up hon.


Chris :cowboy:

Not waiting for the storm to pass, but learning to dance in the rain ....

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Tania B



I'm sorry I can't help but only sympathise with you. On the good side the medicos are being really very thorough and not dismissive. The uncertainty must be so hard for you.


Hope things improve for you :cowboy:


Tania xx

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Hi Scully,

Crikey what an ordeal for you. I hope you're taking it easy today as you must be exhausted. Sending you lots of :coffee2: and :pullhair:

As the others have said on the plus side your doctors are taking you seriously and making sure that they cover all the bases but unfortunately that means more waiting and tests for you. I know it is easy to say but try not to worry yourself too much as the stress will not help with the symptoms and all the worry in the world won't change the results. The important thing is that you have medication and physio to help you manage the symptoms while you wait for the next steps and for the jigsaw pieces to fall into place.


Take care and remember we're all right behind you whenever you need us :cowboy:

Life is short. Eat dessert first. Jacques Torres

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Hi Scully.


wow what a day and a half you had yesterday! You must be exhausted hunni. :hugs2:


I really feel for you. As others have said, no amount of worrying will help, but thats so easy for me to say isn't it?


If you have a good relationship with your GP, it might be possible to book an appt with them for a couple of weeks time. They may then have a letter from the hospital and be able to explain it all to you.


From what you say, they didn't actually say there was doubt about the dx of MS just the type, or have I misunderstood? It's possible that the new tests are to fix a type or rule out anything else that's going on (as if you need anything else!)


I am not a doctor , but I don't think stopping you current meds would be a good idea. If you have an MS nurse it might be worth ringing them about the meds.


I personally have a habbit of going over and over in my head what the doctors have said and I end up making myself dizzy! A friend suggested writing down everything I remember from the appt. I have tried this and it really does help. Not only does it get things out of my head and into the real world, but I can look back at what I've written and be a bit more detached from it.


Be kind to yourself over the next few days hunni





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Hi Honey,


Oh my goodness. It's sounds like what happened to me a few years back. I remember feeling all up in the air when the Specialist MS Prof told me that they needed to investigate further...and there was me thinking that I was there to discuss going on to a drug called Campath. I was on the phone with Cara my fellow mod,and something that she said,struck a cord with me,

'You know the main thing is that your symptoms are being treated'

That in a way gives me a sense of wellbeing,whilst the professionals get on with the job of working thier way through a complex medical history. I know it's not ideal to be in your situation,but try and hang on to the thought that you are you,and nothing is going to change that. Meanwhile maintain a good relationship with your g.p who could turn in to a anchor in this topsey turvey process.




Michelle :hugs2:

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