Newly diagnosed

New diagnosis and before diagnosis
1

Hello,

This is my first post and I am writing in the hope of hearing from others to help me get my head round things.

My story so far: I had severe lights in both eyes in October, following weeks of triple vision and no feeling in my left leg. Having visited Eye A&E, I was sent to Neurology in the RVI in Newcastle. I was then scheduled for an MRI scan. I attended the MRI scan expecting nothing from it, as the consultant had said in the first appointment. When I went back for the result at the beginning of December, I was shocked to be told very bluntly that they had found something which potentially indicated MS. To make sure it was nothing else however I was booked in for a variety of tests including LP (which I was petrified of), Evoked Potential, ECGs, Xrays and blood tests. I only knew I was booked in for a test when a letter came through the post. Waiting for each letter made for an interesting Christmas.

I received details of the results of each test by being cc:d into rather scientific letters to my GP. My boyfriend kindly Googled the terminology in each letter for me so we can understand what was happening (so I didn’t see anything concerning as you do when you just Google medical things!). Last Thursday I received a letter from the Neurologist, which I took to my GP on Monday morning to clarify things for me. At the end of the letter it stated that I was being transferred to MS colleagues. My GP informed me that I was being diagnosed with MS.

Throughout this unknown process, I have been really supported by my close family and boyfriend but we are all very much in the dark so when I feel concerned I ask questions which unfortunately makes them feel helpless as they don’t know the answers. Not knowing where I am going next, my GP suggested that I contact the MS colleagues in the RVI to find out what happens next. After being put through twice to Muscular Skeletal Department a member of that team took pity on me and had a look at my records and said I was on the waiting list, she then put me through to Neurology, who told me they couldn’t find me on the records. Then I politely asked them to look again on the waiting list and see if I was on that. They then said I was but it will be a while (over two months) before I will hear from them about when I will be scheduled for an appointment. So the whole thing could be months away.

This has left me feeling really lost. I know no MS is the same and things can only be identified by the pattern of symptoms, but when I was going through the tests I felt that I had stages to go through. Now I have nothing but uncertainty and this has left me feeling so lost. I have made steps in my diet and fitness but based on what I have read on the MS Society pages. I haven’t wanted to tell anyone but my close family about my diagnosis because I don’t feel comfortable with it myself yet. I guess because I don’t really understand it.

I spoke to a lovely lady on the MS Society helpline today and she suggested posting on this forum to hear from other people who have or are going through the same thing. I was wondering if anyone else has received very little communication with the consultants? If so how did you cope with it? Is there anything you would recommend for me to do, to help through the wait in limbo land? To be honest I am really struggling to get my head round this.

Thanks so much in advance,

2

Hi

Welcome to the forum (that no one really wants to be on!!).

Unfortunately the wheels of the NHS work slowly, appointments are usually pre booked months in advance. I had to wait 4 months from when the consultant at the local hospital told me is probably had MS to seeing the neurologist to confirm it (there was reasons for this though, not usually that long apparently). Fortunately!? the local hospital had done all the tests neurology needed and along with the diary of the symptoms I had given them I was dx on that appointment.

Keep a record of all symptoms (a lot I didn’t know were symptoms until I read up on ms during the 4 months wait), how long they have lasted etc etc. I still come across some things which I think “oh god, that was/is probably ms”. I was dx in October last year, even though I was expecting it, suspected myself I had this for at least a year previous and probably have had ms for 10 years at least.

If you’ve been referred to the ms team at the RVI, they really are excellent, so don’t worry too much about the appointment, the only problem is the wait, use it to try to get your head around what’s happening (even if just a little bit), read up on everything you can, MS Society/MS Trust are the best sources of information (stick to them rather than Google).

I have RRMS, at my appointment at the RVI , I was taken straight after to see the MS nurse, and put on DMDs 4 weeks later, different neuro’s (and there is more than one ms neuro at the RVI) probably work a different way though, and a lot will depend on the type of MS you are dx with. There will also be MS groups in your area, look on the orange ‘near me’ icon at the top of the page, mine has a weekly meeting as well as once a month, it won’t matter if you are not officially dx yet, I am sure you will be welcomed (saying that I’ve only actually made one of them so far).

Limboland does suck, this forum is excellent though, any questions you have don’t hesitate to post another thread, or you can pm me if you want, I’m still learning, some days I think I know absolutely nothing, other days just some!!, very few will say they know everything.

Hope this has helped, even if just a little bit, take care

Cherry x

3

Thank you for coming back to me so quickly Cherry. You’re absolutely right about the problem being the wait! I find it challenging that I have been diagnosed by Neurology but am now on the waiting list for a further appointment. A lot of posts I’ve read in this forum seem to say they were diagnosed and then seen by an MS Nurse almost immediately, am I reading them right?!

I have taken time to read up on things and have read resources on the MS Society page (will head over to MS Research now - thank you!) I have also left my contact details for the young persons group in Newcastle so I am hoping to hear back from them because I think it may help me come to terms with things to meet similar people.

I know I am a solution based person (which can be very annoying for my nearest and dearest in some situations!!), and I think this is what is really making me uncertain. As I feel like I am trying to do everything I can to have some solutions or control (all though there is no real solution at the end of it all!!) but without details of this appointment it doesn’t give me the next step on the horizon (however long away it may be!) to work towards.

I haven’t looked at the medication section as didn’t know whether I would need anything. Would you recommend me doing this?

4

Hi again,

Don’t know if this will help but on the Everyday Living Forum there is a thread about ‘How long did it take to come to terms with dx’

it maybe worth reading through that, may give a better insight into what everyone goes through etc. May help (or not) a little.

Cx

1 Like
5

Sorry, I’ve only just realised you replied before my last update, doh.

I think seeing the MS nurse depends on a lot of things, as I have highly active RRMS they wanted to get me on DMD asap, so they got a ms nurse to see me straight away. It also depends on the area you live, from what I’ve worked out from others over the last 6 months or so, a lot on this forum have spms or ppms and don’t see ms nurses at all.

Did they give you any hint as to the type of ms you might have? The DMD’s are only given to people with RRMS, there are other medications for various symptoms you can get for all ms types. This would be worth discussing with the neurologist/ms nurse when you finally get your appointment to see if there are any medications which would help.

Although I have a lot of sensory symptoms which are with me all the time (numbness/pins and needles, balance problems) to name a few) I don’t take any other medications and won’t until they get unbearable (think the DMD they pump me with is bad enough), you could always look up the medications that would ease your symptoms.

Sorry if I’m a bit vague, but I only got dx in October so this is still all a bit new to me, don’t hesitate to ask or post a thread though if you need information/advice.

Cherry x

6

Hi

Your story has similarities to mine although I was fortunate to see a neuro very soon for the actual diagnosis.

I’m solution focused to and try to tackle problems head on so understand how difficult the waiting and uncertainty can be. You’ve also had a hell of lot to take in, in just a short period of time.

The good news is you’ve been diagnosed quickly. I know it may not seem good news right now but what ever is going on with your brain is going on anyway and a speedy diagnosis can only help with access to treatment and support.

I would not be pleased with the wait to see a neuro either as really they should be the one giving the diagnosis as they can answer questions. It could be worth contacting PALs and explaining you have found out your diagnosis (with what at the end of the day is a serious health condition) indirectly and wish to make contact with the neuro / ms nurse in a timely manner to discuss your results and what this means to you. I would feel this is a reasonable request and it is worth trying to move things forward a bit.

7

Forgot to mention - not all hospitals have this but the RVI does, they have Neurologists and also Neurologists who specialise in MS, which will be who you have been referred to, as far as I can tell the RVI is one of the leading MS hospitals in the UK.

Hope this helps to put your mind at ease.

Cherry x

8

Hi Cherry that does help me and my worrying brain! Thank you :slight_smile: