Hi everyone
Well I saw the neurologist today and am still none the wiser now. He confirmed yet again that yes I have MS, but said he couldn’t tell me which one it was I had yet. He is pretty certain it’s either what he called “mild” or “RR”. He’s decided not to take into account the episodes I have where I can’t walk as he says they are symptoms that have already presented themselves prior to diagnosis, and wants to wait and see if I have another bout of Optic Neuritis or a new symptom presents itself before making a further diagnosis. He has said that if I wanted I could see the MS Specialist Nurse, to which I said yes, as I’m hoping I will get a bit more information from him.
I wonder if the Neurologist would think it mild if he had days when he couldn’t walk, or had numb fingers and feet, or felt so ill and exhausted they couldn’t get up in a morning. Bet he wouldn’t call it mild then.
Still, I know I shouldn’t say things like that. I know there are others out there who have it a lot worse off than I am. Just sometimes neurologists use really inappropriate words. Or is that just me???
This is an MS specialist???
There is no such diagnosis as mild MS. No way, no how, never.
The only official term for a mild form of MS is Benign MS, but this is only diagnosable in patients who recover well from their relapses and have minimal disability after at least 10-15 years. By definition, it cannot be diagnosed in the beginning unless the patient has a clear history of previous relapses and they are still relatively able-bodied.
Given that this guy has actually said that he’s discounting earlier relapses, how on earth could he even consider Benign MS as a diagnosis???
In my opinion, this is utter b******s 
Of course, in the wider schemes of things, I suppose it isn’t terribly important. When we fill in forms, we just put MS. When we speak to employers, officials, etc, we just say MS. Very few people know enough to ask what type.
One caveat to that: DMDs. If you have had at least two “clinically significant” (i.e. disabling, debilitating) relapses in two years, then you should be eligible. Maybe talk to the nurse about it?
Sorry that things aren’t much clearer for you
Karen x
Hi Karen
Thanks for the info. This was my Neurologist who came up with all of this. He wouldn’t have even sent me to the MS Specialist Nurse if I hadn’t requested it, so glad I did that. To be honest the appointment felt like it was just repeating everything I’d already gone through with him, except this time he had the results of the LP. The only thing I can say is that I came away with a confirmed diagnosis by the Neurologist of MS, and that I got a referral to the MS Specialist Nurse. Won’t be seeing him again for 6 months. He asked about any other symptoms which I told him all about the problems walking, the numbness in my feet, pain in arms, poor balance and everything else I have been experiencing and he just sort of blanked it. He even said that they were inconsequential. Personally they don’t feel that way when you experience them. Fact is, he is only going to be interested if I have a new symptom appear. Other than that he said that MS Sufferers are their own doctors and to go to the GP if anything new happens. Looking forward to seeing the MS Nurse now who will actually understand and be more helpful!
Thanks again
Tina
He sounds about as much use as a chocolate teapot!
If I were you, I would (gently) pick the nurse’s brains to find out who the best MS specialist is in your area and (assuming it’s not your neuro!) move to whoever that is at an opportune moment. It really can make a difference.
He’s right about us being our own doctors though - only problem is that most GPs insist on a neuro or MS nurse approval / recommendation before they’ll prescribe anything so we end up as some unpaid gobetween.
Just a thought - it’s not widely known, but not all neuros can prescribe DMDs. It would be worth asking the nurse if yours can. It’s best to be with a neuro who can, just in case.
Kx
Hi Karen
Thanks for that. He said he was going to write to the MS Nurse Specialist so I can go see him, so I will take it from there.
Just so glad I joined this forum and am getting good info from somewhere. If I had to rely of the Neuro I think I would despair. Think what makes it worse is if the day you see the doc with your follow up appointment you are having a good day, they seem to think that all days must be the same and treat things a little flippantly.
I didn’t know that about the DMDs though. That’s useful to know. So many things to take on board
Will, as you say, pick the nurse’s brain when I see him
Tina