A '95% certain' diagnosis - confused!

New diagnosis and before diagnosis
1

Hi everyone,

I am new here, having spent much of the past week in hospital after suffering a loss of sensation down much of the right-hand side of my body. After many many tests and examinations, and an MRI scan on Monday, I saw a neurology doctor yesterday who said he is 95% certain that it is MS, which left me absolutely stunned to be honest and the last thing I expected at 34 years of age. It is only now that I am piecing together other issues I have had in recent years which are now clear were all symptoms of this condition which I had put down to other things. The most significant was a loss of sensation in my left hand last year. My GP said it was likely carpal tunnel and it cleared up within a few weeks of wearing a splint.

Anyway, the MRI showed 2-3 lesions on my spinal chord and 1 on my brain. The doctor said one of them fitted with the numbness I experienced in my hand last year, and one of them fits with my current symptoms, which I now know to be called a relapse. I have had this numbness for 12 days now and I am so worried the feeling isn’t going to come back, but I am trying to stay positive.

Anyway, the main purpose of this post is because I am so confused and frustrated and I have no real idea of what I should be doing now. The doc said he’d be very surprised if this wasn’t MS, hence his 95% comments. Apparently I am to wait for an appointment with a consultant and MS nurse, which makes it seem like it’s more than a 95% possibility however I did have some further bloods taken to confirm a few things before I was discharged yesterday and I don’t yet know the outcome of these. I am also worried about the fact we are going into lockdown tomorrow and the delays this will likely cause to getting a black & white diagnosis. I feel like I am completely in limbo. I have told a few close friends and my husband, but I have lied to others who know i’ve been in and out of hospital as I don’t want to tell them it is ‘probably’ MS and worry everyone only to find out it isn’t.

I am curious if this has happened to anyone else, and how long it took for the follow up appointments to come through? Is there someone I can speak to and ask questions? My GP? The hospital? I have so much I wish i’d asked yesterday, but I was so shocked by what I was being told that I felt like I was having an out of body experience.

Any advice, reassurance or information would be gratefully received by this very overwhelmed newbie.

Many thanks in advance.

Kim

2

Hi Kim, I saw your post and thought back to when I was first diagnosed, checking the forum every 5 mins for update. Head generally in a spin. It is one of many elements of the diagnostic process that needs to be changed. There should be looked at. After being delivered such news you can barely think straight and then are left to stew for his knows how long before getting to speak to anyone. Based on my own experience, my advice would be to make a nuisance of yourself. It can be stressful but it is better than waiting for the phone to ring. I would probably start with the MS nurse as she is more used to dealing with day to day queries. The neurologist tends to live in a impenetrable panic room. In terms of getting back to normal, I also have spinal lesions. The first one took me a while to get over - 6 months of gradual improvement. Obviously there is no rule of thumb as depends on size, location etc but in your favour, you are still young so the body will be able to repair more effectively. Assuming that you get a formal diagnosis, the next step will be to go on DMTs if you choose to. Be prepared to fight your corner for the best available and post on here for advice when the time comes. Again, I am no expert but the blood tests may be to rule out NMO, which is similar to MS but has characteristics that can be picked up in the blood. Hope this is of some help for now and if nothing else, my reply will get you to the top of the forum where the more experienced members will be ready to help

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Sorry for the poor grammer by the way, was typing on my phone!

4

Hi, your neuro may wish to do more tests eg lumber puncture, EMG, VEP and others, before he feels it is definitely MS.

Diagnosing MS usually takes a long time…but not always.

In my case it took 22 years! I had classic physical symptoms of PPMS, but all the tests came back clear.

I can imagine how much of a shock this is to you.

If you have the name of your neuro`s secretary, give them a ring and ask how long it will be before you get an appointment.

Boudsx

5

Hello Kim

Your general neurologist may have hedged his bets with a 95% diagnosis because he’s not an MS specialist. So he’s referred you to a specialist consultant as well as an MS nurse. The chances are that the neuro was a bit more than 95% convinced, but didn’t want to prejudge matters until you’ve seen someone with the appropriate experience to 100% make the diagnosis or not.

The consultant may want to have more tests done (eg nerve conduction study, visual evoked potentials, lumbar puncture, or a formal neurological examination), or may accept the neurological exam you’ve had and the MRI evidence and diagnose you from that.

You’re very unlucky to be in this position just as we head into Lockdown, but there’s no reason the MS nurse and/or the consultant can’t either talk to you on the phone or do (preferably) a video call (Zoom, FaceTime, Skype or Teams) with you.

The MS specialist consultant should be able to tell from the MRI whether you have the typical ‘demyelinating’ lesions of MS. Therefore s/he might be able to diagnose on the basis of the scans and the information from the neurologist you’ve seen.

Demyelinating means that your immune system is attacking the myelin or covering that is supposed to protect the central nervous system. MS is an autoimmune disease, this means that your immune system is attacking healthy cells (ie myelin in the case of MS) instead of ‘enemy invaders’: the viruses and infections which the immune system is supposed to attack and destroy.

Most people with MS (about 85%) start out with the relapsing remitting variety. This means, as you’ve been told, you may get periods where you experience relapses, ie you have symptoms such as what led to your ‘almost diagnosis’. You should expect to have partial or complete remission from relapses. (And it does sound as though your diagnosis would be RRMS from what you’ve said about your last years experience.) 12 days is nothing when it comes to remission I’m sorry to say. It can typically take weeks or even months before remission is as complete as it’s going to be.

Were you given high dose steroid treatment in hospital? This is typically the treatment to bring MS relapses to a faster end than they would otherwise be. They’re not pleasant drugs to take, and aren’t always terribly reliable, but they do tend to work the sooner you take them in the course of the relapse.

It does seem unfair that you’re on the edge of diagnosis at your age. Many people are diagnosed later. In fact though, my first MS relapse was at the age of 30 and I was formally diagnosed at the age of 35. This was almost 19 years ago (one reason why it took so long for diagnosis - there were no disease modifying drugs available until 2002 so there was no point in telling me it was MS in 1997 when I was 30!)

I agree with Oneinthree, calling the MS nurse is a good idea. You wouldn’t be making a nuisance of yourself at all. It’s their job! If you don’t have the contact details, phone the neurologists secretary and ask for them.

For information about MS, try looking on the tab at the top of this page labelled ‘About MS’ or look up the MS Trust on the Internet. They have a huge range of leaflets which are trustworthy and useful.

One of their helpful sites is https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid This has all the disease modifying drugs that are available to people with RRMS. These are designed to reduce the number and severity of relapses. They’re not a cure, but it’s a good idea to be on one.

It’s tempting, but try to avoid googling MS, symptoms and treatments. You can believe what you read from the MS Society or MS Trust, and the NHS and of course what you are told by your MS nurse and neurologist.

Keep asking questions on here, we’ll do our best to help you understand the bloody disease! Just keep in mind that we only know what we’ve learned through our own experience of the disease, we’re generally not professionals and can only really give you basic info and guide you to reliable websites.

Best of luck.

Sue

6

Thank you for taking the time to respond and for the information. I do feel like I’ve had this huge bombshell dropped on me and then been left alone to figure it out for myself at the moment. I don’t have any details for the MS nurse yet, but I will call the neurology secretaries early next week to see what I can find out and who I can speak to. Thank you again for your reply, it is very much appreciated.

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Thank you for replying to my post, and I am sorry to hear that it took you so long to be diagnosed. The nuero doctor did mention a lumbar puncture but that he doesn’t think it’ll be necessary as all the signs are there…as much as the thought of the LP terrifies me, if it’ll give me the 100% diagnosis then I welcome it! I will be calling the neuro secretary next week to follow things up and see how long it’ll potentially be before I get seen. Thank you again for your post.

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Sue, thank you so much for your reply and the helpful information, it is very gratefully received. I have done a lot of reading on the MS Trust website which is fantastic. I knew so little about MS before this week but the resources available are brilliant and have made things seem a little less scary and daunting. It’s also nice to know that there is an online community here where everyone seems so lovely and willing to share their experiences. I wasn’t given any steroids in hospital, although the doctor did mention them but I was still reeling from his ‘almost’ diagnosis at that point so I can’t recall exactly what he said - I think it was along the lines of steroids being reserved for the more severe relapses. I shall most definitely be calling the MS nurse via the neuro secretary next week to follow things up and find out when my appointment might be. As you say, hopefully they will be able to conduct this online or over the phone if face to face isn’t possible, which would actually be preferable at this time to be honest as at least my husband can be there. All of the hospital time so far (around 30 hours over the last week) has been spent alone due to Covid (understandable) and that’s been pretty hard for both of us. Thank you again for your reply, it is very much appreciated.

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Kim

I was in a very similar position back in January when I was told I “probably” had RRMS and I’m sorry to say that it took until August for confirmation of that Diagnosis. In the Neuros defence we did go into a national lockdown. As others have said there were many other conditions that needed to be ruled out and that involved more tests like X-rays, Visual Evoked potentials and few more MRIs all of which were delayed as a result of the lockdown. That said it seems unlikely to me that there will be similar delays this time around and to be honest when I did get to hospital for the tests I felt much safer than at say the supermarket so chin up on that front.

I addition ot these delays the Neuro was considering a diagnosis of NMO which is something so similar to MS that it’s difficult to distinguish but that was because my symptoms were atypical (basically they matched my personalty of being an awkward bugger) so if you’re symptoms are bit more typical then it shouldn’t take as long

Basically Sue has covered anything else I would say so follow her advice, although I have to confess that I actually found the high dose steroids to be a lot of fun, the house has never been so clean!

Remember though that it’s not the end of the world even it it feels like it sometimes.

Patrick.

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I kind of agree with your neurologist about steroids. Personally, with a ‘motor’ relapse, ie one that affects mobility and/or strength, walking, plus eyesight, I’d be taking high dose steroids. So long as a) I could get the steroids very early in the relapse, and b) I have tested or had my wee tested to make sure I don’t have a urinary tract infection. (A UTI can cause you to have a ’ pseudo relapse’ - where you may not have direct bladder symptoms like urgency and frequency, but have what looks like an MS relapse. Some GPs aren’t as aware of this as perhaps they should be.)

If however the relapse has more ‘sensory’ symptoms like numbness, I’d avoid steroids. So your doctor is probably right to not prescribe steroids, but keep it in mind if you do have a bad relapse that impacts walking, eye sight, or is seriously horrible to live with.

There are so many resources available now to help you get your head round the diagnosis. Plus there are also many ‘disease modifying drugs’ (aka DMDs or DMTs) that help to reduce the number and severity of relapses. Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid Your MS nurse is likely to start talking about a drug to reduce relapses quite early on. Basically, the less relapses you have, the less MS will affect you. (I am writing as if you have a 100% diagnosis as I suspect that will be next - however, there are other diagnoses that look like MS but aren’t!)

Sue

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Hi Sue, yes I did start looking at the different medication options, but it’s a little overwhelming at the moment so I will wait until I have had my follow up appointment and discussed with the MS nurse first so I understand a bit more (and of course have had a 100% diagnosis, which the more I read the more certain I am is the case as so much aligns with current and past symptoms).

Thank you again for the information, you have been really helpful at what is a very stressful time for me.

All the best,

Kim

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Hi Patrick,

Many thanks for you reply and sharing your experience with me. I did a bit of reading into NMO as I kept seeing it mentioned online and I presume that’s one of the things they are looking for in my blood tests, but from what I’ve read I don’t think my symptoms really align with it.

I think I have been relatively ‘lucky’ (if you can call it that…) in terms of it being a fairly quick process so far - it seems that for some people it has taken many months and years to get any answers. I am just hoping that I get a 100% confirmed diagnosis soon so that I can get on with planning ahead and coming to terms with things properly, as that’s hard to do at the moment.

Thanks again for your reply.

All the best,

Kim

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Hi Kim

It’s truly a huge learning curve with MS. The sheer volume of information and the new terminology you are faced with is like scaling a mountain formed of words.

After almost 24 years I’m still learning. So you’re absolutely right to wait for your conversations with the MS nurse and neurologist. Plus a 100% diagnosis of course. For all we know, all this is useless information!!

Best of luck. Keep asking questions, try not to worry and keep in mind that MS is not the same diagnosis it was 30 years ago. Or even 19 years ago when the first disease modifying drugs became available on the NHS.

Sue