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Help needed - What Questions to ask Tomorrow

Hi everyone,

Well tomorrow is my follow up Neuro appt from my hospitalisation in July. Purpose of visit (Neuro’s words) - to see how I have responded to the IV steroids, and discuss if any further treatment is necessary.

Since July have had 2 spinal cord lesions found whilst in hospital, and olicogonal bands in CSF from LP results were given a couple of weeks ago.

Not sure whether I’m walking into a diagnosis, a ‘wait and see’ or to be told it could be something else and discharged!

Have emailed Neuro’s PA a list spanning 25 years of possible neuro symptoms with timelines as best as I can remember and she has scanned this onto my notes ready for tomorrow.

I’m sure I need to be asking questions and need help with questions for

a) a MS diagnosis and b) It might be something else.

As far as I can see, the only conditions where O Bands are likely to be present in CSF only are MS, Lyme Disease and Lupus

My brain is mush today. I think it’s hit me that tomorrow could be a life changing kind of day. I can’t think straight

Thanks so much if anyone can help

Minnie x

hi minnie if it isn’t too late, get someone to accompany you, someone who has seen for themselves what has been happening, this person can prompt you if you dry up (highly likely) and help you to remember what the neuro says. i would never have thought that i was the type of person who would dry up but i did and was so grateful to my friend who went with me. if you can’t get someone to accompany you, don’t be afraid to take notes and ask the neuro if he can repeat/anything you didn’t understand. now get yourself together, this is a much awaited appointment. you are right, a diagnosis is life changing but NOT life ending. good luck

Thanks Carole,

My husband is coming with me, he is an engineer with an analytical mind and his logic balances my emotion!

I will definitely take notes

I think it’s that moment when he might say ‘any questions’ … and you know you have millions …but at the moment I can’t think of any!!

I’ve bought a quirky raspberry pink handbag and am going to wear my daughters purple velvet desert boots…because they make me feel good!!

Even though at 51 I probably should be more staid in my choices ha ha !

Hi,

It can be for many reasons. But why were you hospitalised in the first place? Also did this hospitalisation result in you needing the steroids?

In any case do not worry too much, whatever you think it maybe (above) a lot of research has gone into these syndromes/diseases and very good treatment is available.

its good that you’re taking your husband with you. A second head never hurts.

all the best

Hi Anon,

I was hospitalised due to total bladder retention and significant weakness in leg and dragging foot over a two week period, resulting in being unable to stand/walk - and yes had IV steroid in hospital as well as 2 brain/spine mri and LP

I guess they would want to know how your doing at the moment, if you’ve had any other symptoms shown since then. I would assume that they would carry out tests again to see if anything has progressed.

I don’t think they will diagnose you with anything. But more of a check to see if symptoms have progressed of if you’ve had any new unusual symptoms.

Hi Minnie

Did the IV steroids work? Ie, did you have total or incomplete remission?

Plus, did you have any brain lesions or only the two on your spine?

Have you had any symptoms since discharge from hospital?

I’d certainly be hoping for a diagnosis of some kind. It does sound like MS, but then as we are constantly telling people, we aren’t neurologists and just don’t know.

So I suppose I’d be asking first and foremost, is it MS? Are the spinal lesions demyelinating? If the answer is no, or it’s not certain, then what else would the neurologist be considering? And are there any further tests to be sure?

If the answer from the neurologist is that it’s CIS rather than MS, then you’d need to ask why it wouldn’t be MS given the history you’ve had.

If its MS and the steroids worked, then you’d be expecting it to be labelled relapsing remitting. If it’s MS but not with that label, then why not?

Of its RRMS, then will you be given disease modifying drugs? And whatever kind of MS, an MS nurse?

This is all a case of ‘it depends on what the neurologist says’. If s/he says X then question Y would be appropriate.

Thankfully your husband will be with you. He needs not only to remind you of questions, but also to remember everything that’s said during the appointment. You don’t want to come out with no idea what was said or what comes next.

Do let us know what happens tomorrow.

Sue

Thankyou Sue for your ideas!!

I have had what I would call partial recovery from the steroids. Within a few days I could walk again and bladder working, although it’s not right and often takes ages to have a wee - or conversely I have an accident with no warning!

I have had various symptoms without a break for over a year, including since the steroids, some new, some old ones coming back etc, but nothing as acute as what sent me to hospital thankfully.

Letter with LP results says …“There were oligoclonal bands seen in the CSF only which is supportive of an inflammatory explanation for your neurological problems, and suggests that the area of abnormality seen in the spinal cord was due to demyelination.”… “I will arrange for you to be seen in my next available follow-up appointment so we can see how you are recovering from your symptoms since you have had the intravenous steroids, and then we can decide whether or not further treatment will be required.” …blah blah

So who knows??? The phrase suggests demyelination is frustrating. Yes I do need to ask what other tests should be done to rule out other conditions if he says not defiitely MS Although I was investigated by Rheumatology a few years ago for Lupus, which was ruled out

I’m sure I’ll be on tomorrow evening, either to celebrate definite news (which would be a relief, no more limbo) or to ask a zillion more questions!!

Meanwhile just hoping I might sleep tonight, as last 4 nights have been nothing but hours of spasming, burning and jumpy legs and hips!

I haven’t got anything to add as the others have offered great advice - I just wanted to say good luck with the appointment tomorrow :slight_smile: it’s a big event and I imagine that even though you want answers there’s also a lot of nervous energy and fear attached to it. Take a big breath before you go in to prepare yourself. Plan something nice for afterwards to congratulate yourself for being amazing in the face of something scary. And the outfit choice sounds perfect!

Let us know how you get on :slight_smile:

Sarah

I would read that paragraph as virtually saying it’s MS. Or at least a CIS. But since you have had other symptoms over years (may not count as not clinically noted, ie you weren’t being seen by a neurologist at that time), and have two lesions, which are ‘to an inflammatory explanation’ and suggestive that the lesions are due to ‘demyelination’, it fits (probably) with the McDonald Criteria: https://www.mstrust.org.uk/a-z/mcdonald-criteria

You should fit the ‘dissemination in space and time’ criteria for an MS diagnosis.

This is obviously my unscientific, non medical view. Although the letter that I eventually saw after my first MS ‘episode’ also stated that there were oligoclonal bands in the CSF only (that means not in the blood taken at the same time), and lesions due to demyelination.

Plus, the fact that the neurologist wanted to see how you recovered from the relapse with the help of the steroids, and the fact that you have had remission, makes me think it will be RRMS. And the ‘further treatment’ = disease modifying drugs.

I would be surprised if you leave your appointment tomorrow with anything other than an MS diagnosis.

But, as I said, this is just an opinion. Don’t count any chickens until the neurologist rounds them up, counts them, recounts them in case one has gone missing and tells you how many there are. Although s/he may sit on the (farmyard) fence and say ‘I think there are 22 but it’s possible that one or two have gone on a cruise to the Caribbean’!

If I’m right the most useful questions will be about disease modifying drugs (what is currently being prescribed in your hospital? That makes a difference as far as what you could be given), and MS nurses, plus what symptoms you still have and whether there’s any treatment (drugs, bowel and bladder nurse or physiotherapy say) available. In your shoes, I’d be looking for both. Get your husband to take a pen and paper with him (or a phone he can write notes on!) so he can write down names of DMDs, drugs to ask your GP to write a prescription for and any other relevant information. Including the bit where s/he says ‘no it’s not MS, it’s blah, blah…’!

Good luck tomorrow.

Sue

Thinking about it Sue, before all this blew up this year, I had already had a referral from my GP to Neuro last year due to weeks and weeks of altered sensation in right arm, chest and armpit (Which seems to correlate with the Cervical ‘old’ lesion on my spinal cord)

So am on record as having had these symptoms albeit with a Neuro in a different hospital trust. Their investigations never went past 1st appt as by the time they were ready to send me for a CT scan, I had already been admitted under another Trust/Neuro so (luckily I suppose) got MRI &LP there and then plus this follow up appt, so discharged myself from the other Neuro.

I,ve never been one to report everything to my GP to be honest, out of a number of vertigo episodes over 20 years I only ever went to GP twice, to be given antibiotics which didn’t work!

I went once 8 years ago with burning ankles I’d had for 2 weeks and GP said not to worry & come backin a month if it didn’t go away. It went away! So I didn’t go back

I had excrutiating jaw pain for a week or two like the most violent, stabbing electric pulse, which I thought was dental pain - went to dentist who found a cavity a couple of teeth back from the pain & filled it. But the pain was in the jaw lower than the teeth and still rumbled for a few weeks after.

The list goes on!!

But, you know, if I get a DX of MS, I shall be grateful that I may have had years of ignorant bliss - where I haven’t worried about it!

I had 5 years after my first tests (when I hadn’t seen the letter which read a lot like yours, but this was 1997 so patients weren’t supposed to know results!) when I didn’t know it was MS. So I totally understand ignorant bliss. I am happy I didn’t know for 5 years. Fair enough, today there are DMDs, which there weren’t then. But you’ve had a relaxed comfortable life without MS for 8 years.

Now we’ve discussed this as much as we have, I want to know your results too. Please let us/me know!!

Sue

I’m off in a minute…wish me luck!! Pink handbag & purple boots in situ plus 40% off code for Frankie & Benny’s after for a treat for hubby & I :slight_smile:

Now to search for change for hospital car park, which will be rammed as it is visiting hours!

minnie

if you haven’t already get a blue badge so that you can use disabled parking bays.

love the idea of your pink bag and purple boots, rock it!!

hope you get what you wanted/needed from the appointment.

carole x