so confused and helpless

I’m getting no where fast, I had I suppose what could be described as a major MS attack 20 years ago Lesions from C2 to C5 I was unable to swallow and was in hospital for 5 days The lumbar puncture was positive for oligoclonal bands I had 5 days infusion of steroids whilst in hospital They followed this with 6mths cyclophosphamide then azathioprine as although positive for MS I also have Hughes syndrome and they felt my condition was more rheumatological I Have an ANA of 1:640 which is indicative of an rheumatology condition However she discharged me insisting its neurological Then I recovered 20 years without any new flare ups (I had some damage muscle spasms etc left behind but nothing new) Then Bam massive attack in 2021 I didn’t see a neurologist for a year( He said sorry I don’t have much time you obviously you have TN and I will refer you to the pain clinic and see you next year) I have recently seen the Neurologist again Since the attack I can barely walk or cut up food and I am in constant pain with TN and muscle spasms I have been given suitable pain relief from my GP I had an MRI that showed lesions C2 C3 C5 T6 T9 T10 T11 T12 and a lesion in the left hemi pons The lumbar puncture shows 1 oligoclonal band only The Neurologist sent the results through the post writing that my condition is currently quiescent and he will see me in a year I have complained to pals and I now have an appointment on 10th January What do I say What do I ask for I feel a little broken and helpless Thank you if you managed to get this far any advice please?

Hi Mully
That sounds like a thoughtful and informed account of your condition.

How can the Neuro say that your condition is quiescent? They’ve picked up the old lesions in cervical spine but sounds like all hell has broken loose in the thoracic area. Well done for invoking PALS - is the Appt for 10 Jan for a second opinion?

If you have the name of a Neuro you will be meeting, perhaps get another MRI done ahead of the appt? Would give a differential reading compared to the last one (you didn’t say when but presumably between your episode in '21 and now).

If your MS is active again, “they” need to get you onto some DMT’s, so your questions should all be about a “Treatment Plan”. That’s a key phrase as it’s loaded with implications:

  1. you’re expecting a plan.
  2. Have they thought about it? and
  3. Timescale. MS may be a slow-burning condition for people with CIS or RR but occasionally moves in some giant leaps, so some urgency is called for in the short term, to stabilise your condition.
  4. If nos. 1-3 have been answered, you can ask what DMT and when does it start?

The other implication would be if they ignore everything which has happened, they are opening the door to a challenge of negligence. If the appointment on 10 Jan is as a result of PALS intervention, you can bet they will want to assuage that concern.

Thank you for the reply Graham your replies are always so helpful You always sound like such a capable grown up HaHa I’m 60 and I’m still waiting to become a ‘Grown up’ In fact I will write down your suggestions and take them with me as I am always so nervous at the appointments When I was first ill 20years ago I was treated in London when I was referred to my local hospital the referral was refused on the grounds that I didn’t have MS Now that same hospital are saying I do have MS So my letter to Pals I told them they have deprived me of 20years disease modifying treatment and now if they have decided by a letter in the post not in person I have MS ( what a way to tell me) What kind of MS do I have?

[quote=“mully, post:3, topic:70257”]
What kind of MS do I have? [/quote]
No idea, I’m afraid. A qualified Doctor will need your full history to make that judgement.

In preparation, gather every scrap of information and organise it chronologically. Mostly Doctor’s appointments and reports but also other events or episodes that, in retrospect, have become relevant.

What I meant Graeme is if the Neurologist has diagnosed me with MS (by letter) then surely he should tell me what kind

It’s not as easy as you’d think. Without actual data from earlier episodes, they are left with conjecture.

I’m in that jam myself. Diagnosed 2 years ago, symptoms retrospectively suggest Progressive from at least 6 years ago but possibly 8-10 years and a couple of episodes 13 & 18 years ago which might be connected. Result is the Consultant is sat on the fence, waiting for more data. Meanwhile I’m deteriorating rapidly and on NO MEDS. PP- & SP- MS have different approved meds and so rather than give me the wrong one, they give me none.

I hope they can be more certain in your case.

I’m so sorry you’re just left waiting I feel that you should be given a choice regarding treatment but unfortunately I reckon its all about money I don’t see why you can’t have more involvement you’re obviously more than capable of reading up on the various options and so long as you have signed consent I don’t understand why they wouldn’t give you something to try, I’m just hoping they’ll consider some steroids at least