Hello all again,
I just wondered how many people get sent to MS clinic when seeing the neuro, allocated an MS nurse and prescribed drugs commonly used for MS but don’t actually have an MS diagnosis?
I went the Tuesday before last to be told that my brain MRI does show a three or four white spots but without the radiologist report, he doesn’t want to say whether or not they are significant and the results of the EPs are not back yet. However I was called to see him at the MS clinic, was told to increase gabapantin and this morning I received an appointment to see an MS nurse who is coming to my own home.
I didn’t ask the neuro whether he thought it was MS as he was clearly not going to say and the first appointment he waffled on about what a difficult life I have and how that can cause symptoms.
It just seems rather odd to be given leaflets about MS, sent to an MS clinic, allocated an MS nurse but then not be told I actually have a dx.
Has anyone else experienced this?
Hoping you are all happy and as well as you can be.
Jacqui
Hi Jacqui x Must admit it does sound odd! BUT who knows - these things more often than not don’t seem to run or adhere to any protocol xx Hope you get some definite answers soon xxjenxxx
It does sound like he diagnosed you but can’t tell you without the relevant reports.
I hope you get some answers really soon.
Oh and by the way I spend my life in a permanent state of confusion lol
Hi Jaquie, yes does sound confusing. MS is so difficult sometimes to diagnose and of course no neurologist is going to tell you that you have MS unless they are absolutely sure. However, everything does seem to show that the neuro does actually think it is MS, he’s just not 100% confident about it yet. He may be thinking ‘possible MS’ or ‘probable MS’. Both of these are normal when they are not absolutely certain.
Discuss it with MS nurse but I think you are looking at an MS diagnosis, although it may take time. They may want to take it a bit further and do a lumbar puncture. They’ll need all the evidence they can get to make the dx and this can sometimes take time and isn’t always straightforward.
Hope this helps and you get some clearer info soon,
Pat x
hi, yes, yes and yes again.
I can`t recall now how I was told about an MS nurse. I began being seen by neuros back in 1999.
My diagnosis has been all the over the place and after I spent from 2003 - 2010, with a 95% dx of PPMS, I was resigned to it.
But in 2010 I was told I didn`t have MS, but HSP…a rare genetic desease, which mimics MS.
Then in 2011, another neuro said I don`t have HSP, but very possibly PPMS.
In Jan this year it was back to SP…cause unknown.
I`m waiting for a referral now to a top MS doc in Leeds.
All this and still on drugs usually given for MS ie
amitriptyline and baclofen.
Fun innit, wearing a huge ? on your head!
luv Polllx