Advice for another recently diagnosed

New diagnosis and before diagnosis
1

Hi All

I’ve been visiting the site and forum for a couple of weeks since my sort of diagnosis, but have finally got the guts to post!

I have a couple of questions

I had what I now know to be my 4th replapse back in the beginning/middle of Novemeber. Due to not knowing what was wrong with me, and me working myself into the ground, I ended up in hospital. Had the MRI, lumbar puncture and 3 doses of IV steroids and went home. First question - I felt worse quite quickly, was this the MS or the steroids?

A couple of weeks after leaving hospital I rung my GP to have a catch up and she asked me to come in as soon as possible. She had a letter from the neurologist, full of medical jargon, but the part that stood out was ‘the oligocional band results are not back as of yet, but irrespective of this result, I think clinically and radiologically she now as a diagnosis of MS’. My GP has not coded me, and she has advised me that nothing is official until I see the neurologist (4th Feb). Second question - is there a chance the results of the LP could oppose the MRI?

My employer has been very good. Initially I was desperately trying to get back to work, but they were not so keen. I’m a project manager in design, construction and property maintenance. This means generally 60 hours a week, mostly driving or on site, even my office is a 190 mile round trip, so in hindsight, them stopping me returning was a good idea. I have told them I have a likely diagnosis but not about the letter. December is down time for me so I decided to take the rest of the year off and go back in January, new year new start and all. However, the thing that concerns me is that I’m still pretty tired and a bit fuzzy, and I can’t tell why - third question, is it still due to MS, or just simple because I’ve down nowt for 5 weeks (apart from an attempt at 8 days work). How do I tell? My physical symptoms have almost gone

Fourth question - ruring the lead up to this relapse, I was feeling particulary miserable/depressed, to the point I sought help. Could this be related?

Final question, after the initial shock of seeing it in black and white, I seem to be handling it pretty well, in fact I’d say I feel the best I have in ages. Is this normal?

Sorry guys, I am concious I seem to have compliled an essay of five questions, rather than the promised two, and I appreiciate everyone is pretty busy at the moment, but it would be great to get some advice at some point

Cheers

2

Hello and welcome, and well done for plucking up the courage to post

I’ll take your questions one by one…

Feeling worse after steroids is not unusual because steroids make a lot of us feel like crap. It’s also the case that our symptoms can get worse before they get better (with or without steroids) so it can be tricky to tell if the steroids are working at all. All in all, I wouldn’t worry about it. You’re feeling a lot better now and that’s the main thing.

LP results are not conclusive either way. Depending on what you read, anywhere between 5 and 20% of people with MS do not have a positive LP result (i.e. oligoclonal bands in CSF, but not in serum) and it is also possible to get “false positives”, i.e. someone who doesn’t have MS getting a positive LP result. It is this that means that LPs are not strictly needed to diagnose MS: they support a/no diagnosis; they cannot confirm it. So I think you can almost certainly assume that your neuro is not going to change his/her mind between now and February.

Re your fatigue & “fuzziness”: it might be a bit of both (MS and not working), but I’m afraid that fatigue is probably the single most common symptom in MS. Some people don’t get it and some people only get it when they are relapsing so it’s a bit early to tell if you are going to have to learn to manage it long-term or not, but you should probably bear it in mind and not rush back to work too quickly in the new year. Take it slowly and see how it goes - you don’t want to start back all guns blazing and have to go off completely again because you’ve knackered yourself! There are things you can do to help fatigue, most of which is common sense (delegate, lots of breaks, rest before you’re tired, don’t get exhausted, plan & prioritise, eat healthily, good sleep hygiene, etc), plus exercise / keeping fit reduces fatigue levels and there are meds that help some people (amantadine and modafinil). You might want to give some thought to what changes you / your employer could make your life a bit easier if needed (e.g. working at home more, extra equipment, automatic car).

Depression can be a direct or secondary symptom of MS, i.e. MS can damage the emotional pathways in the brain, thereby causing depression, or dealing with MS, its symptoms and knock on effects, can make us depressed. As a result, depression is common in MS (I vaguely remember the figure of 50% of MSers suffer from depression at some point, but I might be remembering wrongly). Also, there was a post on the multiple sclerosis research blogspot (a wonderful source of information) recently saying that a lot of people with MS find they are down / depressed prior to a relapse - so perhaps that was what you experienced? Something to do with chemical changes in the brain perhaps. Whatever the cause, if you are ever struggling with your mood, please see your GP. Counselling can help massively, especially if it’s a secondary effect of MS (including the diagnosis), and there are always anti-depressants.

Is it normal to handle the diagnosis well? I would say that any reaction is normal. Being diagnosed with MS is likened to being bereaved, losing someone, because we go through much the same grieving process. That process involves multiple emotions including denial, anger and sadness, and it can take quite a while to work through until we get to the end goal: acceptance. We are all different so we react in different ways and go through the steps in different orders. The only commonality is the last step, which most of us get to within a couple of years, although the other emotions do tend to get revisited from time to time, generally when we are relapsing :frowning: So don’t be surprised if your mood switches from this current calm acceptance - it may not, but experience suggests that it may well. In general, I would advise not trying to bottle things up and to just be kind to yourself. If you want to cry, cry. If you want to yell, yell. Take it one day at a time - you’ll be OK.

Hth.

Karen x

3

Hi Tratesy and welcome to the forum

I’ll try my best to answer some of your questions. I don’t know about the steroids as I don’t have RRMS so I’ve never had them (I have ppms).

From the letter sent to your GP it does look as if your dx is MS. If the lumbar puncture comes back negative (no ‘o’ bands) then they might want to reconsider, but some people do get a dx with negative LP… it happens when the MRI results show very obvious lesions and when the symptoms are what they would expect with MS and no other condition.

So I think, with the remarks in the letter, you are most likely looking at getting a confirmation of MS… however only a neurologist can give you the dx (not a GP and certainly not me!) so for confirmation you must wait to see the neuro.

Re being tired and fuzzy… well I don’t have relapses and remissions… but I know from on here that even after a relapse people can still be affected by MS… and that’s what it sounds like.

Re work… great that your employer is being supportive. Remember that you are protected by the Disability Equalities Act… so if work gets difficult your employer has to do what they can to make your job easier for you, by either providing aids and adaptations (difficult in your field)… but also by reducing your hours or offering you a less stressful position.

Re depression and emotions… the lesions in your brain mess about with your central nervous system… so they can (but doesn’t mean that they will) mess with mobility, vision… all sorts of stuff. They also mess with your emotions. So yes depression can certainly be caused by MS. On the ‘up’ side some people with MS also experience ‘highs’.

Many people when they get a dx of MS have an great sense of relief. They have had symptoms that were scary and they imagine all sort of stuff like brain tumour or even that they are ‘putting it on’. So to get the dx means that you know what is causing the symptoms, you have a name for it, and also that you are not going mad. Your feeling of well being at the moment is probably that, and it’s perfectly normal.

Well I hope some of the above is useful to you. You have come to a great place on this forum. You are with people who understand huge amounts about this condition, sometimes more than the experts. You are among friends here… and as you can see from this forum, MS is NOT the end of the world.

Pat x

4

Appears Karen and I answered at same time! Gives you plenty to think about,

Pat x

5

Wow, thank you both so much for your replies. Really helpful, and by the far the best advice/info I have read so far.

Going back to the depression thing. I have suffered from depression on and off for about 8 years. I’ve always managed to deal with it, and never told my friends or family. Most of the time I can ride it out, but I have learnt to read the signals and see my GP when I really need to. Without a doubt she saved me in my late teens. This time was particulary bad, she referred me to a mental health officer. I am now questioning the last 8 years of emotions/feelings, whether I’ve been such a disaster because of MS or just because I am that way. Now I feel great, and I don’t know whether its because I’m nearly out of this relapse (not sure if thats the right term) or because I’m taking anti-depressants. I know you guys can’t answer this question, but I find it so frustrating that everything I’ve ever thought about myself might be wrong. My GP thinks that my stress levels and depression might of brought on this relapse. I don’t know what to think.

Regarding work, my employer has been great so far, and I know they will continue to be. This if my first period of sick leave (longer than two days) in 11 years. They will adapt anything and everything they need to, its getting me to adapt will be the hard bit. I’ve always been an ‘all or nothing’ kind of person, and not being able to work at the level I have been scares me. I thrive under pressure and adenalin. Whilst working 60 hours a week, 51 weeks a year is not ideal, it is all I know and all I feel I am good at. I’m not great at some aspects of my job, but I am a grafter and if I haven’t worked a 14 hour day, I don’t feel I’ve earnt my wages. Crazy I know. Both my parents are/were addicts, and I’ve had my own battles. I cannot do things in moderation, so have adapted myself to not do them at all, but as my carpenter pointed out, I think work is my addiction. I know I have to adapt for the sake of my health, but doing it scares me more than any other aspects of the diagnosis (that and the lack of time spent on my beloved motorbike lately!)

I just realised I’ve not really given you an outline about me - I’m 26 year old female, single, just me and my 15 year old Jack Russel.

Sorry, I’ve gone massively off track, but I think I have found some people who understand

6

Oh we understand… absolutely!

It really is impossible to say if the history of depression was caused by MS… but I doubt it. We are not born with MS but develop it, so the chances are they aren’t related.

Interesting how you describe your personality… which is quite similar to me (before I had to give up work that is). Years ago there used to be a belief that there was a certain type of person who got MS… perfectionists, ambitious types who gave life everything they had. That theory of course doesn’t exist now and hasn’t for a long time… but I do sometimes wonder if there’s a grain of truth in it. People that really push themselves… and then WHAM… MS!

Whatever is lifting your mood right now long may it last! Quite possibly the antidepressants which are SO good nowadays.

I found when I was first diagnosed that it was such a huge relief to be able to stop pushing myself. It’s like I had been… I dunno… like forcing myself to keep running in a marathon and suddenly somebody said “Ok… you are ill… you can stop now”. Of course it wasn’t that clear-cut because disbelief and guilt got in the way… but relief was a part of it.

Have a good Christmas, and remember “one day at a time”.

Pat x

7

Thanks Pat.

Having been told over and over again to ‘rest’, I asked my GP what rest is. I generally feel OK, more so in the morning. My GP told me to do whatever it is that makes me happy and de-stresses me. I’m surprised at how not being at work has chilled me out and bit, and taking the dog off for nice long walks, whilst tiring me out, has been very theraputic. My house feels like my home again, and less like just a place I sleep in most of the time. I guess I’ll have to see how I feel after a month back at work!

Thanks again, and wishing you a good Christmas too

8

Hey

Me again! Just after a bit more advice I suppose.

This relapse started early/mid November, I’d say it ‘peaked’ just after. I tried to go back to work too quickly, so gave in and have been off for about 4 weeks. The physical symptoms were gone by mid Decemeber, my sight, balance, strength etc is all good, but the fatigue lingered longer. I really started to enjoy my time off work, took everything postively, got out and saw friends, did normal day to day stuff, had a long over due clear out at home, walked the dog in the middle of no where and generally really cleared my head. Work have been great, and there has been no pressure at all, they’ve even brought an intern back for a month to help me get back upto speed. I started back at work full time (restricted hours, but 1st full week for 7 weeks!) on Monday, felt totally ready for it. Worked at home, felt OK. Had a site visit near Stansted yesterday, about 250 mile round trip, which I know sounds a lot, but is well within what I am used to doing. Left home at 8.30am and was home by 3pm. I was EXHAUSTED last night, physically and mentally, got a bad headache, right eye was fuzzy. Went to bed early and slept it off, but even though I’m working from home again today, I’ve been struggling this afternoon.

I honestly felt good and ready, and wouldn’t have gone if I didn’t. How much longer could this last? Will I ever learn to read what my body is telling me? Will I ever be able to work the hours that I used to? I’ve gone from feeling so positive, to feeling like a bit of a failure in a matter of days

9

Hey

Me again! Just after a bit more advice I suppose.

This relapse started early/mid November, I’d say it ‘peaked’ just after. I tried to go back to work too quickly, so gave in and have been off for about 4 weeks. The physical symptoms were gone by mid Decemeber, my sight, balance, strength etc is all good, but the fatigue lingered longer. I really started to enjoy my time off work, took everything postively, got out and saw friends, did normal day to day stuff, had a long over due clear out at home, walked the dog in the middle of no where and generally really cleared my head. Work have been great, and there has been no pressure at all, they’ve even brought an intern back for a month to help me get back upto speed. I started back at work full time (restricted hours, but 1st full week for 7 weeks!) on Monday, felt totally ready for it. Worked at home, felt OK. Had a site visit near Stansted yesterday, about 250 mile round trip, which I know sounds a lot, but is well within what I am used to doing. Left home at 8.30am and was home by 3pm. I was EXHAUSTED last night, physically and mentally, got a bad headache, right eye was fuzzy. Went to bed early and slept it off, but even though I’m working from home again today, I’ve been struggling this afternoon.

I honestly felt good and ready, and wouldn’t have gone if I didn’t. How much longer could this last? Will I ever learn to read what my body is telling me? Will I ever be able to work the hours that I used to? I’ve gone from feeling so positive, to feeling like a bit of a failure in a matter of days

10

I would guess that your “well within what I am used to doing” reveals the problem: did you try to work at the same pace and do the same amount as you used to? I am really really sorry, but MS fatigue means that you simply can’t :frowning:

It is possible that the fatigue will ease over time, but it is also possible that it won’t.

The good news is that you will get better at listening to your body and you will get better at working around it. However, if the fatigue sticks around, you will need to accept that you will not be as productive as you once were; things will take longer and you will have to delegate more.

One thing that you should start to do straight away: plan breaks BEFORE you get tired. Lots of little breaks will help prevent the need for long ones - so it’s much more efficient in the long run. So don’t do that 125 miles in one go - stop for a coffee mid way somewhere.

Why not have a look at the MSS and MS Trust booklets on fatigue? They’re free to download or order.

And don’t beat yourself up - it’s not your fault so you are not a failure!

Karen x

11

Thanks Karen.

I guess I never thought about the fact that the fatigue could be permanent…

The day was not as long as normal, I’m an early bird so would normally be on the road by 6am, on site by 8am, back home by 1pm and at my laptop until 6pm. When I’ve been really busy, I’ve been doing day trips to Leeds (700 mile round trip) twice a week, and flying to Edinburgh in between, and even that didn’t make me feel as tired as I did on Tuesday. I felt OK during the day, made sure I stopped for lunch, didn’t do anything too physical. The tiredness just suddenly hit me about 7pm. Yesterday when I felt tired I just shut my laptop and called it a day. Have done the 250 mile round trip again today and feeling pretty tired but not as bad as before.

The saddest bit, is we’re having a restructure within the business, and my role will become far more site based. Feels like my career could be ending just 3 years in.

The most frustrating thing is I have felt so positive recently, and now I’m not so sure

I will look at the booklets tomorrow, thank you.

My neuro appointment is on the 4th. Do you have any idea what they will say? I have no idea what I am going into

Thanks again

12

Thanks Karen.

I guess I never thought about the fact that the fatigue could be permanent…

The day was not as long as normal, I’m an early bird so would normally be on the road by 6am, on site by 8am, back home by 1pm and at my laptop until 6pm. When I’ve been really busy, I’ve been doing day trips to Leeds (700 mile round trip) twice a week, and flying to Edinburgh in between, and even that didn’t make me feel as tired as I did on Tuesday. I felt OK during the day, made sure I stopped for lunch, didn’t do anything too physical. The tiredness just suddenly hit me about 7pm. Yesterday when I felt tired I just shut my laptop and called it a day. Have done the 250 mile round trip again today and feeling pretty tired but not as bad as before.

The saddest bit, is we’re having a restructure within the business, and my role will become far more site based. Feels like my career could be ending just 3 years in.

The most frustrating thing is I have felt so positive recently, and now I’m not so sure

I will look at the booklets tomorrow, thank you.

My neuro appointment is on the 4th. Do you have any idea what they will say? I have no idea what I am going into

Thanks again

13

I can guess what will happen on the 4th (confirmation of diagnosis and discussion re possible disease modifying drugs (DMDs) perhaps), but it really would be just a guess.

If your diagnosis is confirmed, do take the opportunity to discuss DMDs. Also bring up the possibility of meds for fatigue (there are two main ones: amantadine and modafinil, and although neither work for everyone, some people get benefit) as well as any other symptoms you need help with. Make a list before you go and make sure to use it!

Don’t wave your career away too early - there may be a way of making it work. And your fatigue may still improve - it’s early days really because your last relapse wasn’t all that long ago.

Perhaps you’ve gone back to work a bit early?

And, although a 250 mile round trip may be fair enough with breaks, perhaps a 700 mile trip should become an overnight one? It’s a sensible way of making life easier for you, at least in the short term… Efficient journey planning may become a bit of an essential skill too, i.e. can you change when and how you visit sites so that you travel less, but maybe use hotels & trains more?

Kx

14

Thats a good idea, I have an apaulling memory, so will be sure to make a note of the questions I have when they come to me!

I think I came home in a bit of a funny mood earlier, so apologies for the negative attitude. I think I need to remember that nothing is certain until the 4th, and just take it from there.

I don’t think I’ll be doing any more 700 mile round trips, and as a heavy coffee drinker I am very familiar with most motorway services (Warwick is one of my favourites ) so stopping mid journey should be fine. My colleagues will be relieved that I’m no longer requesting 7.30am meetings!

I can definitely plan my journeys better, and stop trying to fit too much into one day. The rail links are awful here, but I am now starting to look into how long a journey would be by train before I decide what I’m going to do. I try not to stay away, as daft as it sounds, because of my dog. I have great neighbours who let him out etc during the day, but I don’t like leaving him over night. He does come in the car with me sometimes, and I’ve found more and more dog friendly hotels, but hes nearly 16 and I’m concious that he may not be around a lot longer. He’s got epilepsy, arthritus and one eye - we’re going to be a right pair!

Thanks again Karen

15

They do say dogs often take after their owners!!!

I have to say ms or no ms you approach to work is extreme and cutting down yours hours on the road in particular would be beneficial to your health. Even at my best what you count as everyday would kill me.

IF it is ms, as Karen says discussing DMD ( if you fit the criteria) and getting started on them may well mean that with adjustments you will continue with your career path for many years to come.

I have not relapsed since starting copaxone,so don’t get too worried about your job yet.

Just remember to take your symptom and question list with you to the neuro and if possible have someone in there with you.

Make sure that that person knows what you wanted to find out, because you have no idea how you will respond even if you are expecting a dx and the rest of the appt may become a blur. At least whoever is with you can ask the questions and remember the answers,otherwise you may come out kicking yourself about being left with more questions than answers.

Getting a name and number for your ms nurse (if applicable) is the most useful thing to get as they will your main source of contact.

Take care

Pip

16

Hi Pip

Thanks for your reply. I’ve had my dog since I was 11, maybe I take after him, though I’d like to think I smell nicer and have better social skills!

My sister has offered to come with me, I think she might help as a second pair of ears.

Thats good news that copaxone has worked for you. I have built this up too much this week, and I think I just need to sit back, take it one day at a time and wait to see what the Neurologist says. Sleepless nights worrying aren’t doing me any favours thats for sure

I don’t think I’ll be trying to revisit the level of work I have in the past, but you are right, I’m being a tad hasty in writing my career off now

Thanks again

17

Hi traitsy,

I had another replapse in November (not that I knew what it was) and was diagnosed in December with MS. Started on DMDs right away and also had IV steroids before Christmas to try and clear up the current relapse.

I was suffering terribly with tiredness in the run up to Christmas. All over the holidays I had to keep going back to bed for naps during the day. As of the New Year I started eating better and getting out for a walk on my tea break.

No idea if it’s the DMDs, the steroids clearing up the relapse, the healthy eating or the walking but I am feeling way better this week. I haven’t had to go to bed straight after work at all and have been wanting to socialise and meet friends whereas before all I wanted to do was sleep. It might also have been the stress I was under just before and after diagnosis.

Anyway, hopefully you’ll find an improvement soon. Although I definitely don’t have the same energy I had a couple of years ago, at least I am functioning again. But I have had to learn when to take a day off and lie on the couch or go to bed at 6pm.

You need to know (and accept) your limitations so that you don’t push yourself too much.

There’s no shame in it and your career doesn’t have to suffer, especially as you have very understanding employers (as do I).

Best of luck

18

Thank you Meme, good positive thoughts and advice. First full week of work and I’m feeling OK, so I guess that must be a success!

19

Had my Neuro appointment today. Took a list/record of symptoms and dates, which he seemed to read, and kept. I had the old school, black and white, reading off of a script Neurologist (the one my GP was hoping I wouldn’t see, and now I know why). He is getting the MS nurse to contact me, but couldn’t give me an indication of how long that will take, and has recommended me for DMD’s, and for some reason also wants me to visit the main neuro hospital in the region. He also wants to see me again in 6 months. One thing I really couldn’t get through to him is that my fatigue is not improving. He was of the opinion ‘well you’re depressed, that often leaves people tired, maybe try Prozac’. This bothered me. I know myself well enough, and have had some bouts of fatigue like nothing I have ever felt before. I’ve always kept myself active, and I know what being tired because I’m down feels like. I also know what feeling tired after a long hard week at work feels like. Last night I felt like I’d run a marathon, played a full 6 nations match and taken 6 A-levels. Infact all I’d done is had lunch with my family, followed by a very short walk. I don’t agree this is because I’m depressed. I feel pretty good at the moment, mentally. I’ve booked an appointment with my GP to talk about this, but I find it a bit frustrating

I gather the DMD’s he is suggesting will hopefully prevent too many/further relapses, but do they also help fatigue?

What can I expect from meeting the MS nurse?

Also, I’m wondering if there is anything I should be doing? I’ve told my boss and sent the form to the DVLA

I feel like I am taking a lot from this forum, and hope one day I can give something back

20

I would guess that he’s referring you to the main hospital because it’s there that they are allowed to prescribe DMDs. (Little known fact that you can’t get DMDs from all neuros or from all hospitals.)

The only DMD that I have heard helps fatigue is Tysabri, but that’s just what I’ve picked up from posts - it’s not an official claim or anything. Most people aren’t eligible for Tysabri though, so don’t get your hopes up just in case.

Rather concerned that he didn’t just nod and look sympathetic about your fatigue - surely he’s heard it a million times before? - fatigue is the most common symptom of MS after all! Trying to pass it off as depression is a bit suspect - is he an MS specialist? I’m also surprised that he didn’t make suggestions about how to help your fatigue (e.g. exercise, CBT, meds such as amantadine). Maybe these are things to discuss with your MS nurse when he/she calls? Hopefully they’ll know a bit more about it!

What else can you do? Two things come to mind. Firstly, make sure that you don’t have a critical health policy or clause in another policy/mortgage/whatever lurking in your filing cabinet. MS is a payable condition. Secondly, check out the msdecisions website about DMDs - it’s a very helpful site with loads of info.

Other than that, just take it one day at a time. Even when we’re expecting it, getting a diagnosis can hit us like a ton of bricks - and it doesn’t always happen straight away. Getting to grips with it all can be a bit of an emotional rollercoaster so give yourself a break for behaving a bit out of character, don’t bottle it up, be kind to yourself and to your loved ones because they’ll be hurting too.

You’ll be OK :slight_smile:

Karen x