Hello All,

Bit of a dilemma.I am just on the tippy-toe edge of a confirmed diagnosis.My problem is that where I Iive the neurologists only visit for one day every other week,this means that there is a huge waiting list to be seen.I have asked to be seen privately ,but to see the doctor I have previously seen I have to wait 4 weeks, to see the other neurologist it’s only 2 weeks . The upside is that he has a special interest in M.S.

I’m worried that if I change doctor it wil create confusion,but on the other hand it might be best to have a 2nd opinion from someone with more experience with M.S

I have have had mri of brain and spine which both show m.s lesions and I am now waiting for results from lumbar puncture and blood tests, to eliminate A.D.E.M.

Any thoughts or advice would be very much appreciated .

Linda xx

If you know, or can find out the name of the neuro you would see under the NHS you ought to be able to find out where he practises privately (I did this via my GP), you can then have a private consultation & the follow ups could be via the NHS system.

I would add it would be better to see the MS specialist and your original neurologist will probably be happy with this if you’re diagnosed with MS.

Good luck


Hi Linda, sounds as if it’s more or less a certainty for MS, by what you say.

Although it’d be a bit quicker to see the private neuro, two weeks won’t make any difference, but if you paid privately then what about having to pay for any treatment that might be recommended? Whereas the NHS provides any drugs you might opt for, free.

Rosina x

Oh flippin heck,all these decisions to be made. I am so so confused,I just want to hide in a hole and not get out again until all this nonsense and uncertainity has gone,I hadn’t given the prescriptions a thought ,as I have not had any prescibed to me at all yet .What a journey this is that we are all on.

Thankyou for your reply Rosina,I will have to give it some thought now before I make a decision .x



Thankyou P.D,

Rosina has mentioned the prescriptions which I honestly hadn’t given a thought to.

Linda x

I know Linda…sucks doesn’t it? Try to take it one day at a time, I know it’s hard because you want everything done immediately!

Once you’ve seen your neuro there’ll probably be more decisions for you to think about eg. what treatment, DMD’s if needed, vitamins, diet…& so on

So take things slowly & give yourself time to absorb all this new information.

Good luck

R x

Hi Linda

I am at a simillar stage of diagnoisis as yourself and this week had a paid appointment with a private neuro. I met the private neuro and he ran through my last years tests, MRI scan, lumbar puncture and bloods. He asked me how I was and how I have been feeling since my original episode of not being able to move my right arm for a few weeks. I told him that apart from the odd strange thing happening, I had been pretty good, or at least as good as can be. (I know that whatever you say to these neuros, they will ignore most of it and you end up sounding like a hypochondraic, so I prefer nowadays to say not much at all) We all know what we go through on a daily basis and these neuros really haven’t got a clue!!!

So after a brief discussion about previous symtoms and clinical evidence from my doctors notes, he told me that if I would have presented in his NHS clinic last year, with the symptoms I was showing, with the results from my MRI, which showed multiple lesions of my brain and two of my spine, then he would have started me on a DMD drug there and then.

I never went to his clinic but to a different cinic and saw a different neuro who took a different approach and followed the guidelines that IF i were to have a second symptom simillar to my arm going numb for a few weeks then I would get the diagnosis. This neuro put me through a lumbar puncture and has arranged for me to have a battery of electrical sensory tests carried out as well. The downside for me is I have to wait (god forbid it doesn’t happen) for a second disabling episode.

Anyway, as things stand, the private neuro wants me to have a MRI with contrast to see if there is activity of demylation at present. Hopefully within the next 10 days. He feels that I do have MS, but it is MILD. Therefore, I have a funny feeling that this neuro is going to fob me off along the same path as the last one and leave me in limbo as well. This private neuro is from a “hit it hard, hit it fast” school of thinking, so should/ might offer me treatment (hopefully).

Don’t get me wrong, I don’t want to have MS, but I DO think that I have it , the results are in the tests I have had and I just need to have an answer sooner rather than later. I am sat on a critical illness policy which is going to payout hopefully, once I get the definitive diagnosis from a neuro and hopefully, with the chance of going on a DMD I can try to fight back against any nasties which I might encounter in the not too distant future.

Sorry to ramble, but good luck.

PS - if you do require prescriptions for medicines such as DMDs, then i’m pretty sure that the NHS covers anyway and you don’t have to pay.