Questions for LP follow up please

New diagnosis and before diagnosis
1

I have the follow up appt with my neuro on Tues where I presume I will get the results of my LP and possibly a dx.

How long is a typical follow up appt and what questions should I ask?

Background: I am 48 years old, have a 16 year history of neuro problems, mainly migraine, fatigue and tightening and p&n down whole of right side. Two brain MRIs in 2000 and 2006 which showed two then one white spot in right periventricular region. Symptoms attributed to stress, mild head injury, hyper extension and subluxation of cervical vertebrae, migraine, endometriosis, and, of course, anxiety.

26 April 2016 developed extreme pain in neck and transgeminal nerve followed by neuro symptoms over whole body including worsening and recurrence of right side symptoms and inability to sleep for extreme discomfort. Told to take paracetamol and of course, attributed to anxietyā€¦ After numerous returns to docs, calling out paramedics, going to A&E etc I was dismissed with tramadol, which didnā€™t help at all. So, paid for MRI of spine ourselves on 8 June and discovered 8mm lesion at C2C3 on left side of cervical spine. Then got NHS MRI of head which showed a few small deep matter lesions and a single subtle periventricular lesion (presumably the same one as before) My left eye is very painful, and I thought my vision was blurred but have had two optometrist apts which found nothing but very dry eyes and my astigmatism. The dry eye drops totally resolved the blurring (slightly embarrassing) but I still feel there is something odd, would like a VEP.

Neuro said brain is not typical of MS, but MRIs were without contrast. Did lumbar puncture for additional info.

I still feel terrible and although movement now OK so can walk, I am in a lot of pain (taking Gabapentin) and unable to do anything more than cook one meal and wash up before muscles tighten. I hate that my mouth is weird in the right and I dribble sometimes. My eye bothers me and hurts. I canā€™t walk far and the fatigue regularly means I end up flat out in bed for days. I canā€™t tidy my own room or get to the Drs on my own. Feeling thoroughly demoralised because I thought Iā€™d be able to do more by now. Today a friend came round for the first time and spent an hour with me, now I feel like Iā€™ve climbed Everest and then fallen off the top!

2

Hello,

I donā€™t think itā€™s a matter of what questions to ask.

I would be more interested in getting the diagnosis followed by a discussion of the steps needed to make life bearable.

We all hope weā€™re getting the best medication in the right dose, and the appropriate countermeasures in the the form of exercise.

Once a neurologist has handed out the diagnosis they close the book on you. Itā€™s all down to you, your GP and MS Nurse (if you have one).

If anyoneā€™s has had a different experience Iā€™d be pleased to be proved wrong.

Best wishes,

Anthony

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3

Your reply has really, really surprised me, which means it is a very good job I asked the question and you answered :slight_smile:

I thought it would be possible that I wouldnā€™t get a def dx, but technically I think my MRIs and history fit the McDonald criteria. I donā€™t understand why he discounted the periventricular lesion but was off my head on pain and lack of sleep last time so didnā€™t ask the right questions then. I imagined the appt would involve a bit of discussion about likely conversion or strength of evidence for MS or NMO or other cause, and that my preferences for going forward would be taken into account and that Iā€™d get to examine his reasoning a bit.

But will it really just be a matter of him pronouncing his view and sending me on my way with no support but a GP who now wont make any decisions regarding my treatment because Iā€™m under the neurologist and the GPs know nothing about TM? They wonā€™t even prescribe Vit D beyond 800 a day let alone anything else and now no one but my named GP will talk to me anyway, so it takes me weeks to get an appt. Thereā€™s no point in me just relying on them and the MS nurse is far too busy to deal with people who ā€˜justā€™ have TM and no official MS dx

Will I really just be signed off from the neuro? Iā€™m shocked, frankly. And very scared. What if his guess is wrong because I havenā€™t adequately explained the last 16 years properly? At my age, donā€™t have time to wait and see. My life is so limited and unpleasant now, all I do is sit in bed listening to the radio and try to find the energy to cook healthy food for myself once a day and I am so scared of another attack. I will do absolutely anything to avoid it. I canā€™t go through it again and need to make sure the dx is as likely to be correct as possible.

So many people on this forum and others stress the importance of early treatment and I know that in some circs treatment can be given for CIS but also that DMTs can be harmful.

Sorry for the rant. Not directed at you personally. Just shocked.

4

I took a list of questions with me to my neuro appointments leading up to diagnosis - and found it helpful to maximise the time available. Iā€™ve got my MS file with me at the moment so will scribble below the key ones. In broad summary these were:

(1) Please explain my results and what they mean. If it is MS, what type? If it is RRMS, what type? (e.g. active / highly active etc etc). What are the risks of it being progressive at this stage? What do my lesions suggest about my prognosis (i.e number and location)? If it is not being diagnosed as active RRMS at this stage, why not (given scan and history)?

[Note: I knew if it MS then I wanted lemtrada - and was keen to understand how my diagnosis fitted into the ā€œtick boxesā€ for eligibility for that treatment - and my questions are focussed on that. I think youā€™ve previously said this is also the route you want to go down?]

(2) Can I have lemtrada? Do you think this is a sensible choice? If not, why not?

(3) Are there any specific risks for me in taking lemtrada (e.g. as a result of family medical history etc)? [NB. I had read a lot about the general risks of lemtrada so didnā€™t include a further question on these but they were discussed]

(4) What if it doesnā€™t work? Will I be able to move to e.g. tysabri or will this be a closed gate post lemtrada? [NB: Response was that it wouldnā€™t but that there may be additional PML risks given reduced immune system]. What about stem cell therapy? [Note: Response was that failing lemtrada or tysabri is a requirement for stem cell]

(5) Are there any trials/drugs in the pipeline I would be better of considering [Note: we discussed the possibility of a Phase 4 open label ocrelizumab trial - but as this hadnā€™t landed the advice I was given was not to postpone lemtrada for it (in case it is a long time coming/ never lands)). We also briefly discussed Cladribine (but off-label and not something my neuro team were keen on - and I am nervous of lack of long term study)]

(6) What else can I be doing to keep myself healthy? We discussed:

  • (i) MS diets [Note: my neuro didnā€™t recommend them - too exclusionary and Im a healthy weight. Key was a healthy, balanced lifestyle]

-(ii) exercise - strongly recommended to keep up (huzzah!) - I do Pilates/boxing/Running/weights/personal training/hiking - all seen to be good.

  • (iii) supplements - [He recommended Vit D (but not crazy doses - just 2-3 reg tablets a day as Iā€™m not deficient). As I am iron deficient taking an iron supplement was seen to be sensible. As was Vit B12. LDN was met with scorn approaching snake oil. No real views on Biotin and im not progressive]

(7) What are the next steps (e.g. see MS nurse)? Who is responsible for setting these in action? What is the timeline?

(8) What do I do if I relapse / experience new or worsening symptoms?

(9) Anything else I need to be aware of (e.g. telling DVLA / critical illness cover implications etc)/

Hope that is possibly helpful even if not LP related?

K xx

[P.S I should add that I am a naturally bossy corporate lawyer and my neuro described my approach as ā€œfiercely efficientā€ Iā€™m not sure he meant it as a complimentā€¦]

1 Like
5

Hello,

I think I would also add a question re. managing your on-going symptoms. I was lucky in that mine had resolved themselves with steroids prior to my diagnosis appointment, so I didnā€™t have this down as a question but I think you definitely should.

FYI - none of my appointments lasted more than 15-20 mins tops - but we still managed to cover everything I wanted to - and I ticked off my questions as we went along, and then double checked that everything had been covered before I left the waiting room.

I also had my boyfriend with me at all my appointments and we discussed in advance what my ā€œobjectiveā€ was coming out of each meeting so he could help me make sure I got the information/outcome I needed from each session. Finally, I dropped my neuro an email post appointment to confirm the follow up actions/next steps.

It sounds a little bit overboard, but there is so much information to take on board - and it can feel like you a speaking a foreign language - so ordering my thoughts in this way and using it as a prompt for the meeting helped me make sure I didnā€™t let the emotion of a stressful situation detract too much from my ability to make sure I understood what was going on, the process and how it would move forwards.

xxx

6

I think that covers everything.

7

Thatā€™s brilliant, thank you. I canā€™t seem to think straight for long atm so that gives me a framework to base it on. Iā€™m hoping to create a flow chart so I can more easily ask relevant questions as he gives me info. I think because there are so many possibilities of what he might say, that I am feeling overwhelmed by trying to make sense of every possibility in advance.

Heā€™s a nice man, but time is bound to be limited. I wish they would give you the results beforehand so the consultation could be just about discussing them and you could get any surprises out the way.

Interesting about the diet. I really want to be checked out properly as I struggle to keep weight on and was severely Vit D deficient despite walking to and from work and eating lots of dairy. I suspect some sort of absorption issue and have now stopped eating dairy. Physio said I should definitely mention to neuro, but I donā€™t want to sound like a crackpot, even though I would honestly take any snake oil on offer atm if there was a chance I would get even a little of my life back.

Funnily, Iā€™ve spoken once to the MS nurse months ago and she asked if I had a medical qualification because I sounded so knowledgeable and knew all the terms. I told her no, just a librarian :slight_smile:

You are starting your Lemtrada soon, I think? Hope it goes well.

8

Hi Teal,

A flow chart sounds like a good plan.

Yep - hopefully get admitted to Kings on Sunday night to start Lemtrada on Monday (although there is a risk that this could get postponed if they need the bed for an emergency. I have to ring Sunday lunchtime to confirm. Fingers crossed). Feeling pretty positive but it is obviously playing on my mind (which is why Iā€™m hovering on the boards a lot this week I think). Very grateful to be able to move through to treatment.

Let me know how your appointment goes. Good luck!

K x

9

I think diagnosis / nature of the disease spooked the control freak in me I to overdrive! :slight_smile:

10

I absolutely love the NHS, but there used to be an assumption that patients were merely passive recipients of it. Thankfully, this is changing and in more enlightened corners of it we are now seen as partners in our disease management and patient involvement is acknowledged as being crucial for good outcomes.

I spent some time living abroad where scans and results were given directly to you, so it was very difficult coming back here to a culture of restricted information. Itā€™s a bit better across the board now, but I still feel that I have to be very careful about how I communicate my willingness to take ownership of decisions. Some egos are very fragile :wink: