Advice on neurology appontment

New diagnosis and before diagnosis
1

Hi all

I’ve posted a couple of times before, and I guess I check out the forum every day, so I know there’s lots of good advice out there. And I’m not just talking about Karen! (Hi, by the way, and thanks you’ve answered a lot of questions already).

I was told I ‘probably’ had MS, based on symptoms/history and lesions on my MRI scan, and had a load more tests (evoked potentials, lumbar puncture and stuff) before Christmas. I’ve got the follow up appointment on Monday and am wondering what to expect. I’ll get the results of the tests obviously but will I get a confirmed diagnosis? How likely is it that they’ll change the diagnosis? Will there be even more tests?

Would really value some advice on what to expect and also what to ask in the consultation. What’s the most important thing to know? Is it a good idea to have someone with you (my wife has said she’ll come if I want her to)? What do you do afterwards?

Bob

2

Hi Bob,

I cannot really give advice, but am in the same position as you really. Had all my tests yesterday and got apt for results in 2 weeks.I too was told a few mths ago I may well have ms, but needed further tets.

So really interested in the answers you may receive.

Wishing you all the best and let us know how you get on.

Beth

3

Hi Bob,

All I can say is what I have experienced. Like you had all the tests before Christmas, and now have the follow up appointment on Monday. Only difference with me, is that I got my answer when the neurologist wrote to my GP and copied me in on the letter. So I’ve been fortunate - if you can call it that - to find out I have MS before my follow up. Chances are you will get an answer one way or another at your follow up. From what the neurologist told me, an LP is the best way for them to get an answer as to whether or not you have MS. I know a few people who have had their diagnosis confirmed by an LP. Course, I guess it all depends on the neurologist. As for what to ask, I really don’t know as I’m in the same boat as you. I guess for me, I will want to know what type of MS I have. Medications to help the symptoms. What help will be there for me. That sort of thing. I always think it’s nice to have someone go with you to these sort of things cause at least then, if you miss something that is said, chances are they will take more in and be able to go through it with you after. That’s just me though.

Good luck with your appointment!

Tina

4

Hi Bob :slight_smile:

I think’s it a good idea to take your wife with you. Not only will she provide an extra pair of eyes and ears, you will have someone to talk through what happens straightaway and that can be really helpful (unless you’re the sort to cogitate on stuff for ages first of course). It’s would be good to include her anyway - whatever happens, she’s affected to.

There are three main possibilities: you are diagnosed with MS, you are told that there is still insufficient evidence and that, until something new happens, you are still “probable MS” or you are told, no, it’s not MS.

If it’s not MS, then I guess the discussion will centre around why it isn’t, what it might be, if you need to see a different consultant, what other tests might be needed, etc.

If it’s probable MS, then I would recommend asking exactly why you are not being diagnosed with MS and to have this explained to you versus the McDonald criteria. Ask for this explanation to be put in writing - in the letter to your GP - so you have a formal record of it. I would also ask if the neuro will see you again and if you can have the contact details for an MS nurse so you can get advice re ongoing symptoms.

If it’s MS, then I think there are two things in particular that are important: contact details for an MS nurse and DMDs (disease modifying drugs - do you qualify?).

For all three options, take the opportunity to ask about help with any symptoms that you are struggling with and ask that the neuro puts any recommendations / prescription details in the letter to your GP (saves any hassle getting prescriptions from the GP).

Make a list and get your wife to remind you to use it! It is very easy to miss something!

What to do afterwards? That, I really can’t advise on - except perhaps to go with the flow and do whatever feels right at the time.

I hope it goes really well.

Karen x

5

Thanks everyone.

I will try to share my experience of the results follow up appointment on the forum. Sounds like they are a few other people in the same situation as me.

I guess I’ll need a number of different lists of questions depending on the results and what the neurologist says. I think I will ask my wife to come too. Whatever the outcome I will have lots to talk about I’m sure.

Bob

6

Hi Bob

Thought this might help you, I was browsing through another website and found this list. Seems like a useful list to have. I know I will be keeping it handy when I go for my follow up appointment

Questions to ask after your diagnosis of multiple sclerosis:

  1. What type of multiple sclerosis do you think I have?
  2. What other symptoms could I develop?
  3. Should I call you right away if I develop certain symptoms?
  4. How can I better manage symptoms at home?
  5. What medicines do you recommend for my MS? Why?
  6. How will I know if the medicines are working?
  7. Are there ways to get help paying for this medicine?
  8. What side effects should I expect, and how should I respond to them?
  9. Is there anything else I can do to ease my symptoms? Would physical therapy or occupational therapy help?
  10. What types of exercise, stress management, or other lifestyle changes may help me?
  11. Where can I find counselors who have worked with people who have MS?
  12. Where can I learn more about MS without getting too much scary information?
  13. Where can I find information about clinical trials?
  14. Are there any local support groups for people with my type of MS and symptoms?
7

So, that was all over very quickly.

We got to the hospital 45 minutes early, despite the snow, and I was whisked in almost immediately as other patients hadn’t arrived. Neurologist asked how I was, reprised my symptoms, and then gave me the results of the Lumbar Puncture and Evoked potentials.

LP was positive for oligoclonal bands. EPs were negative. Neurologist said, “well, that really firms up the diagnosis” but back tracked a little when I pressed him. “So, what your saying is it’s definitely MS?”. To which he replied “98%, I’m referring you to the MS specialist. He will give you more information.”

He added that he wants me in for 3 days for steroids. I had a urine test which is a pre-steroid check I guess? He’s referring me to the specialist MS guy, as he has a budget for DMT. Apparently specialist will also sort ou an MS nurse and stuff.

So, am I diagnosed? Have I moved from ‘probable’ to ‘pretty much certain’? Is the neurologist just hedging his bets until I see the MS guy in case he says something different?

I guess I’ve moved down the line, but I don’t feel much closer to an answer (is there an answer?) and still have lots of questions. Same number of questions, just different questions about different things.

Hmmmm? Lots to think about.

Bob

8

Hi Bob

Sounds almost as confusing as my appointment. All I can say that from my experience I know that Oligoclonal Bands can be indicative of MS as in my case. If you other symptoms and past medical history are as well then it looks likely that it is MS. As least you are being referred to an MS Specialist though which is a good thing.

The fact that you are going to get the steroid treatment will definitely help with your symptoms. I know they did with my Optic Neuritis.

Sounds as though the Neurologist is hedging his bets a little and, maybe he doesn’t specialise in MS so wants a second opinion from someone who does.

Either way you are moving in the right direction and will be getting the treatment you need, which has to be a good thing.

Tina

9

Sounds like a diagnosis because most neuros will hedge their bets a wee bit with a diagnosis like MS, where there is no definitive test and so many obscure mimics. Best to wait for the specialist to confirm it though, but if you need to, it might be worthwhile telling your employer what’s going on so you get the protection of the MS diagnosis.

Re steroids: I am not a fan as I have bad side effects and poor results, but they do work very well for some people. They work best when taken early in a relapse, but they don’t always work. When they work, they speed up the recovery time, but they don’t change the outcome (i.e. the residual symptoms are the same with or without steroids). If you have never had steroids before and you are coping well with your symptoms, then it is worth considering not having them this time if only for the fact that steroids increase the risk of PML should you ever want to go onto Tysabri. Obviously it’s a different matter if your symptoms are bad!

The urine test may be to check that your current symptoms are not due to a UTI - they can cause “pseudo-relapses”, which feel just like the real thing but are not due to new MS activity and which go when the infection goes.

Good news about the referral to the specialist - I hope you don’t have too long to wait.

Karen x

10

Hello,

Your main worry is a fear of the unknown. I don’t think anyone with MS has just woken up blind or crippled. It takes time for our body to react to changes happening on such a small scale as the nervous system.

Anthony

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