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2nd Opinion - what to ask?

New diagnosis and before diagnosis
#1

Ok so cut a very long story short, My Neuro Worked part time when she first took my case 3 years ago and after my last meeting with her (a year ago) I found out she only works 1 day a week !!!

So after she told me, the damage has been done, (lesion/inflamation = Nerve damage) their is nothing they can do but monitor.

I lost faith in the NHS, having now had a few big falls over the last couple of months I went back to my doctors and decided new hospital new neuro lets see what happens.

So my question is this.

As I never improved, yet only now started getting worse, no doubt they will probably want some more tests to compare but…

How do I approach the subject of “Is what ive been going through classed as a continued episode”.

I mean, Lesion in brain 1 suspected in spine, possitive bands bla bla, just I dont know the best questions to ask to final get a diagnosis.

I will not stop at, “Your symptoms are not indicative of one disease any more”

Sorry to Rant, but any advice on what I should be looking to do for my second opinion and what i should be asking this time round to get the most out of it and not to be fobbed back off into Limboland.

Much love nd keep smiling

#2

Hi Tommy,

Sorry if this sounds a bit negative, but I’m not sure which questions you ask will have much bearing on the result.

All neuros are bound by the same diagnostic criteria, so if one hasn’t found sufficient evidence to diagnose, it’s likely that another - looking at the same evidence - would come to the same conclusion. It doesn’t matter what question is asked, it’s all down to whether the evidence fits. If one consultant couldn’t make it fit, it’s likely another couldn’t, either.

To be honest, it’s unlikely just a single lesion in the brain and a suspected one in the spinal cord would get you an MS diagnosis (not multiple enough).

Of course, if they do comparative tests, and something new has emerged, that may be the game-changer. But generally speaking, the same evidence gets the same answer, even if you ask a different person, or phrase the question a different way.

I think there is increased willingness, these days, to commence disease modifying drugs before a confirmed MS diagnosis - i.e. after just a single incident (clinically isolated syndrome - CIS). However, I still wouldn’t say it’s the norm. Assuming you still don’t get an MS diagnosis, it may be worth asking the neuro what are his (or her) views on treating it anyway. That’s assuming it’s a path you wish to go down. DMDs aren’t necessarily a “no brainer” - depending how active a person’s disease is. If you only have very low level disease activity (it would have to be quite low level, if you only accrued one confirmed lesion in three years), the potential benefits of DMDs for you personally might not outweigh their risks and side-effects.

To put it another way, DMDs are designed to cut relapses. Someone who isn’t having relapses isn’t going to see an improvement, but they’d still be accepting the risks and side-effects.

Tina

#3

I understand and I appreciate your opinion.

Without further tests I guess they couldn’t confirm MS or anything else for that matter.

The reason for my 2nd opinion now is due to the big falls ive had, it feels like i could be going through a relapse,

I just hate feeling helpless and hopeless.

Thank you again.

Regards

Tom

#4

Hi Tommy

What you have to ask yourself is “Do I want a Dx of MS or not?”

A formal Dx (to the Macdonald Criteria) could mean that if you have Critical Illness Insurance,you could get a nice lump of cash. What it will also mean is informing the DVLA, and a 3-year driving licence. (I assume that you drive)

If you are only (or mostly) concerned about getting the right treatment as soon as possible, then the way you approach the new neuro does matter. The advice given to me by a neuro (plus a bit from my own knowledge) is:

Make a list of all your problems (or the things that concern you) - hand written.
Now, group anything that relates to the same bit of your body together - hand written.
Now re-order the list so that you have the worst item at the top (and so on) - hand written.
Now, write it out again, with just the five worst items on it.

Now you can type it up on computer. Print off two copies, take them with you, and do not hand them over. All that writing should have fixed everything in your memory, and you want the neuro’s attention on you - not on a piece of paper. If asked what is bothering you, you now know what to say. if you are not asked, you can cut in with a remark like "Well, dctor, what really worries me is … …). You can offer one copy of the list as you leave - but it may not be needed.

I would start by thinking about why you have fallen. It could be that there is no single reason, it could be that (for example) it only happens when you step backwards, or to one particular side. Maybe your balance is going and you cannot move one leg fast enough to keep that balance. If you can nail that down, then you have something that suggests a particular neurological function is the problem.
You don’t tell the neuro what the problem is, just what the symptoms are.

Hope this helps

Geoff

#5

Hi! I went through years of being fobbed off. My symptoms were typical of PPMS, yet no tests results proved it. So they left me for years, with a probable PPMS diagnosis. I saw 14 neuros!

Then all of a sudden, a new neuro said it wasn`t MS at all, but HSP…a genetic condition, which mimics PPMS.

It is caused by mutating genes. There is a 50% chance of being passed down…I have no idea who passed it to me!

I dont reckon much to neuros, but we got nowt else!

Chin up kid!

pollx

#6

I went to see neuro today with the same thing got 3 brain lessons from my first attack which has left my hands damaged, I’ve been having blackouts and can be out for hours very tired all the time and have had blurred vision basically got no where they will not do more scans even though my last ones were 2years ago and she told me that unless I have trouble walking or lose my sight they won’t do anything I asked wot about trying to stop it before it happened I’m going to go private and ask for second opinion xx

#7

If you’ve not had a follow MRI since your original episode I would start there. That will quickly and effectively establish your current lesion load, and if there has been progression. If it shows changes you are then in a stronger position to obtain definitive answers and plan of action.

I have changed consultants more than once. You have a right to ask for a second opinion or to go elsewhere although it is not a given right that your request will be agreed. In my experience however this is generally obliged. You can go through your GP, MS Nurse if you have one or even your neuro. The MS Society’s Website has a find a specialist search facility and this would be a good place to start. Look to see which neurologists are MS specialists and which are prescribing centres (not all are). Some may be involved in published research and clinical trials so its worth a Google to see what it throws up. The treatment landscape is changing so quickly, it is ideal to have a consultant who is up to date and proactive in such matters.

If I hadn’t pushed for a DMT for my CIS I would not have been given one. If I had not asked for a follow up MRI I would still be undiagnosed. If I had not asked for Lemtrada I would not be on it. Moral of the story; arm yourself with knowledge and self advocate.