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Should i get a second opinion?

Hi all,

I would really appreciate some advice please.

Basically to cut a very long story short, i have had an MRI showing 5 lesions in the typical areas for MS, the neuro then sent me for a lumbar puncture in January to be able to diagnois MS.  I have only just seen the neuro on Sat to discuss the findings of the lumbar puncture to be told that he hadnt had them back!!!!  I explained that my doctors have had them as they told me the result which was showing 1 ob band but are within normal range.  I told this to neuro to which he replyed, you definantly dont have MS as the LP would have shown two or more bands!!

I asked him why i had lesions to which he replyed he doesnt know but they are totally seperate from my symptoms..... he said if this was MS the lesions would be causing the symptoms but as it isnt becasue the LP came back within normal range he says i have chronic fibro and the lesions are something else!!

I really dont have much faith in the Neuro, (he is a epelipsy specialist), he seems to be working of such old criteria ie he told me in one appointment that he wouldnt offer DMD's until i lost the use of an arm or leg!!!! also at the appointment yesterday he said it could be due to migraines, i havent suffered migraines and i thought the lesions would be in a different place than where they are.

I know i should be very happy that he has said its not MS, but i feel i need a second opionin from a MS specialist, am i right in thinking this??

Thanks for reading :)

 

 

 

 

 

 

Hi pearscar

I personally think that if you are not happy with one professional, then its time to go to another. I think an MS specialist will be a good place to start too. Perhaps go back to your GP and speak to him/her about it?

Hope you get some answers soon, and good luck!

P xx

Hi, You do not need a positive lumbar puncture for a diagnosis of ms also the McDonald Criteria has been revised so that DMDs can be given as soon as possible and not until youve lost the use of an arm or leg. I do not know your circumstances but you are entitled to a second opinon and ms specialist would be advisable. Hope you get yourself sorted.

You are DEFINITELY right: you need a second opinion. The current guy sounds seriously out of date letdown

If your GP isn't immediately happy to refer you, give him/her a copy of the latest McDonald criteria and something that states that a positive LP is not found in all MSers. (I've had a superquick google and come up with this abstract, but I'm sure you could find something with different numbers if you have a longer look: http://www.ncbi.nlm.nih.gov/pubmed/16945427)

You need to see an MS specialist.

Karen x

Hi, after 14 years and seeing 13 different neuros, I still have no firm dx and have 3 possible ones. they are PPMS, HSP and myleopathy.

I did get referred to a top MS man and he refused to see me. GP is trying to find out why he won`t see me.

Yes, get a second opinion of you can.

luv Pollx

Thanks for all your comments, it’s much appreciated.

Karen, thank you for the link I have an appointment tomorrow after work so will print some stuff out tonight incase I need to argue my case!

I am dreading going incase they think I am a pain and just wanting dx with ms. The truth is I want to be a 100% sure I don’t have it, I don’t want another 3 years to go by then find out it is ms and I could have maybe slowed it down by dmd’s, also it’s such a hard place to be is in limbo…

Poll, it must so hard for you still not knowing after 14 yrs I find it hard after 3 years…

Luckily for me much of my symptoms are sensory, although I have recently been a little incontinent and not even realised I have done it!! What’s that about?

Again thanks Carla x

Hi all

Jus tthought i would give you all an update...

I went to see my doc and said i felt i needed to see the ms specialist as i didnt feel the other neuro covered everything and i felt that he was working from the old criteria, well, within 3 days from seeing the doc i have an appointment with ms specialist on the 30th July....wow how quick is that! i cant believe how quick its been. :)))

 

Oh excellent, good for you! I really hope that appointment goes well for you. xx

That's fantastic - just shows - if you push and push they have to listen. Good luck.X

That's great!

Karen x

Please go and see someone else! FYI also, I had a positive Lumbar Puncture but they didn't diagnose me after it. They just said, 'yes, this shows what the MRI said'. WHAT?! Why did they make me go through that?! I had a junior doc do it and she touched a nerve literally and sent a raging thunderbolt down my right leg. 

*sorry* rant over.

You need to tell your GP that you're not happy and can she refer you to an MS Specialist please, for fuck's sake. (In those exact words. ;) )