Newly diagnosed and my three dilemmas

New diagnosis and before diagnosis
1

Hello everyone

I have been reading your posts for several weeks now and thought it was about time I joined this wonderful community.

I have recently been diagnosed with PPMS. I have been 99% sure since May when I saw an absolutely lovely Specialist Registrar here in Reading I was referred to the Neurology clinic in November 2010 after 5 years of subtle symptoms and red herrings during which time an underactive thyroid was diagnosed and brought under control as was a lower back problem. And yet I was still plagued by weird symptoms. My left foot continued to drag and the limping became more and more pronounced and I noticed weakness in my left arm and leg.

Various tests were carried out. A brain scan was inconclusive and evoked potentials negative so a lumbar puncture was recommended. As I had suffered a blinding headache which lasted for 6 weeks when I had a steroid injection in my back I was dreading this but I needn’t have worried. My lovely registrar and a very nice nurse were gentle and proficient and it was a breeze.

Sadly the results came back positive and this, together with a thorough clinical examination that clinched the diagnosis. The doctor’s follow-up letter confused me a little so when I asked my MS Nurse if I should ask for a private MRI on my spine she spoke to the Registrar and the Consultant Neuro (an MS specialist) and they agreed there was no need as they were confident of the diagnosis. So I knew what was coming when I went to see the consultant a few weeks ago. He was very nice but couldn’t really tell me anything I didn’t know already - I was well-informed thanks to this site and that of the MS Trust. Nevertheless it was a milestone. It’s official - I have MS. Abit of a bummer but there you go.

So now I have some dilemmas - loads actually but here are my top three:

  1. How to ‘come out’ - I had told only a handful of people since May - husband and family and a few close friends. But now it’s time to inform others. I have started mailing other friends and today told my Pilates teacher as I find some of the exercises difficult. But next week I plan to broaden this further. I want to tell everyone in the small office where I work 2.5 days a week. Only one person there knows so far. I am not worried about being drummed out of the job - it is a pretty caring organisation and recently made significant ‘reasonable adjustments’ to accommodate a severely deaf young woman. Rather I am worried about people getting upset. Any thoughts on how to break the news without freaking people out? I also run my own part-time business - as a coach. Is anyone out there self-employed and have you informed your clients?
  2. I need to claim on my critical illness insurance but I am worried that I had one episode of numbness 21 years ago that was dismissed by my GP as a trapped nerve. It disappeared and I had no symptoms that could even remotely be connected to MS for over 15 years. Will they try to wriggle out of paying me? I didn’t keep a copy of the CI application but think they asked only about numbness or tingling in the last 5 years.
  3. My final, somewhat trivial, dilemma is finding nice, sexy flat shoes. I can’t be trusted in heels any more other than a couple of pairs of kitten heels that I can wear indoors if I don’t have to walk far. The good news is that my local charity shop will have a bonanza day when I can get down there. The bad news is that I feel like a frump in flat shoes. I guess being quite elegant has been part of my identity and I now need to reinvent that. I also work a couple of days a week in a corporate environment where I need to look good. I do have one pair of black patent knee high flat boots that look very smart but have just got back from the shoe repairers who tell me they can’t be repaired - I have ruined them from constantly scuffing my left foot! RIP lovely boots and roll on the sales! I guess PWMS need to keep adjusting their identity and maybe in a few years time I will look back and wonder what on earth I was on about - but this is where I am right now…

Warm regards

Hilbob

2

Hi,

I’m sorry to hear of your recent diagnosis, but I guess it’s a double-edged sword, as many people feel an element of relief to finally get an explanation of what’s wrong with them.

A few thoughts about your “dilemmas”:

Personally, I’m pretty “out” to most people, but not absolutely everyone. For example, at work, I’ve only told my boss, HR, and those most likely to be affected - i.e. immediate colleagues who might need to shoulder some of my work, if I can no longer manage it, or if I’m off sick. If I’m not fairly confident the person is “up to” the news, and they don’t strictly need to know, I probably won’t bother telling them. If you don’t feel close enough to the person to cross the bridge of them potentially being “upset”, they’re probably not the right person to tell, in my opinion.

Criticall illness - no way of knowing. They normally look through your complete medical history, so yes, they might rake it up. But absolutely nothing you can do about it, either way. I had been to the doctor a few times before, about things I now consider to be related to MS. So I had the same doubts as you, about whether this would now be dredged up against me. But in my case, there had been nothing obviously neurological - or nothing significant enough to have reported to the doctor, anyway, so the insurers didn’t consider either I, or the doctor, should have been alerted to the possibility I might have a critical illness. Nothing to do but claim it and hope - as you have done, I think.

Shoes - let me know if you find an answer to this one! I can’t wear glamorous shoes any more, either. And no, I DON’T think it’s trivial - self image is an important part of morale. No woman wants to wear old granny shoes, when she previously used to be complimented on her sense of style.

I’ve got one pair of flat, slip-on type black shoes, that I can just about wear for a few hours, to a work meeting, but wouldn’t be able to wear every day. Even these, I wouldn’t have been seen dead in, in days gone by, but they’re fairly smart and unobjectionable - not obviously “geriatric” footwear.

Otherwise, I’m permanently in trainers (now falling to bits) or lace-up walking boots. Not good!

I have a real problem about going anywhere smart, like a party, or a restaurant. These days, I think I would have to go in trainers, and carry the “glamour” shoes in my bag. Swap just before entering the venue, and again on leaving. I’m alright, just so long as I don’t have to walk anywhere in them. :frowning:

Tina

x

3

Thanks Tina

Hello nice to ‘meet’ you. Your comments are helpful.

The issue around my workplace are that the organisation employs only 16 people all working together in one office. If I ask certain people to keep it quiet I feel would be putting too much of a burden on them. And everyone knows there is something wrong with me - besides old age that is - and they are already making adjustments e.g. booking me a taxi if we are going to an external event. I think it is better for me to be open with them rather than let rumour run rife. I think I will sit down tomorrow (when I am working from home) and write my script.

You’re right about the CI - will let you know how it goes.

Glad I’m not the only one with a shoe issue. Last week I was running a training event and wore my beautiful Russell and Bromley snakeskin heels for a few hours - not that high but I don’t know how many more times I can manage them. Of course I had my flats in my bag and soon changed into them when the delegates disappeared. Hate wearing trainers except for the gym but I guess I may have to do so soon. Now where can I find glamorous trainers…?

Hx

4

Hi Hilbob, and welcome to the site

Sorry about the diagnosis. No matter how much it resolves our confusions or even that we are expecting it, it still sucks

I suppose I didn’t so much as “come out” as never stop being open about the fact that something was going on and investigations were pointing towards MS. If someone didn’t know and asked why I was walking weird (or whatever), I’d just say, “Oh, I’ve got MS. It makes me walk weird amongst other things!” and then move the conversation on unless it was obvious that they wanted to talk about it, in which case they’d ask - and I’d answer. (Always happy to try and educate!) I think the key thing about telling people is to do it in the way that you would like them to act towards you from then on: people do tend to take the lead from the person breaking the news. If you do it in a, “well, it’s a bit of a bummer, but it seems that I’ve got MS. That explains the…!” sort of way, then people will probably be more inclined to talk to you about it / be more open than if you do a, “I have some terrible news. I have MS. I don’t want to talk about it.”

When I became self employed post dx, I didn’t tell clients unless I had to. Let’s face it, given the option of employing a very expensive healthy consultant vs a very expensive consultant with MS, most companies will go with the former (all other things being equal). One client offered me a full time job for 3 months on my (exorbitant!) daily rate, but I had to turn it down so I came clean to them (ouch £££!). But most of my work was very short-term (days at a time), so my MS really didn’t come into it. I guess I was lucky that a relapse never unexpectedly coincided with a big diary date. So the most important thing is probably how much your MS might interfere with a contract. If it won’t, then it’s irrelevant. If it might, then it’s only fair to let the client know. That’s what I’d do anyway. If you have obvious symptoms and do your coaching face to face, then I guess you are going to have to come clean (honesty is always the best policy in my book). But do you know what? The fact that you have MS is actually a selling point in many ways. (I’m making big assumptions here about what kind of coaching you do!)

As far as your critical illness goes, I’m sure you are fine. There was a court case recently in which the insurance company tried to wriggle out because of previous symptoms, but it was disallowed because the judge said that it was not reasonable for the GP to work out that the patient had MS from the existing symptoms.

Shoes :frowning: Ah, I wish I had an answer. If there is no way that you can do a slight heel and use a stick (this is what I do! I’m very vain!), then you could always wear trainers / basic flats most of the time and then get yourself some gorgeous ballet slipper types for indoor occasions (switching shoes at the door as necessary). Then team them with long trousers, so people only get a glimpse of the sparkle / colour and don’t notice the lack of the stiletto. I guess for the corporate work days, you can make the flatties plain old black patent - boring, but you can always wear an outrageously gorgeous blouse with a long trouser suit so no one notices :slight_smile: The other thing is, and please don’t shoot the messenger, you can always keep your favourite high heels rather than donate them to the charity shop because IF you ever have to use a wheelchair, you can wear them then! This is what I do!!! I bought the most GORGEOUS peep toe cream high heels for a holiday in April 2010. I started a relapse on the way home and cannot possibly walk in them any more. BUT… I do wear them when I use my chair :slight_smile: NO WAY am I giving them up!

You are years ahead of where I was in thinking when I was newly diagnosed - yes, we do have to keep reinventing ourselves. It’s my key strategy for coping with the changes MS brings me and getting the most out of my life. Every time MS takes something away, I have a bit of a downer / spend some time grieving really, but then I do something new; move on. I will not be beaten! So things I “can’t do” any more become things that I “don’t do” any more, just like all the other non-MS things that I “don’t do” any more.

I’m making it sound easier than it is. Sometimes it really hurts. I’ve not got any smart anecdotes or one-liners for that. Sometimes it just really hurts. But life goes on.

Have fun in the sales!

Karen x

5

Karen

Thanks for your post. I have noticed that you always offer really useful and positive advice on the site and I look forward to reading your contributions.

Re ‘coming out’ - I have been pacing those I work with regularly by mentioning trips to the hospital or physio and of course they have seen my limp getting gradually worse - so they will be prepared to some extent. For friends I haven’t seen for a while I have been starting to send them a fairly upbeat and matter of fact email on ‘bit of a bummer’ lines and that seems to be working quite well. For clients I am taking that on a case by case basis. I have PPMS so don’t suffer relapses which makes it easier to plan my time, at least in the short to medium term, as so, far progression has been fairly slow.

I like the way you describe disclosing to those who enquire about obvious symptoms - will give that a go.

And perceptively I think you are right about this making me a better coach - I work a lot with people in transition, so I do think this ‘thing’ will give me more insight. Had feedback from another coach/facilitator this week that I have never seemed calmer or more centred so maybe there are some positives. It certainly helps you stop ‘sweating the small stuff’ as the saying goes.

Good shoe tips by the way. One reason I like heels is that I am under 5 foot 3. Ballet pumps tend to fall off my feet though I have just bought a pair with elastic across and a slight wedge heel which I do seem to be able to walk in and might be a good compromise. Not the glamorous heels I used to wear though! Will not dump all my faves - I have a lovely red patent pair that I might just pose in at home - or stroke wistfully…

And as for reinvention - as a girl my hobby was ballroom dancing and ever since Strictly Come Dancing hit our TV screens I have been pestering my husband to come dancing with me. He resisted and… well I don’t think that will happen now. But maybe there is something else that I can learn - that we can do together - today we talked about taking up bridge for instance. As you say you have to reinvent yourself and move on.

Will update you on my sales bargains - I am very good at shopping and finding bargains - though more and more slowly these days!

Take care

Hilaryx

6

LOL at stroking the red heels

I’m 5’ 2 & 5/8". I know you’ll understand why I put the 5/8"! Me and high heels go back a LONG way :slight_smile:

Giving up dancing has been one of the hard things for me to deal with, but you are right - there are plenty of other things to get involved with.

I love bridge. It’s a brilliant game. Learnt it at Uni; haven’t played it in yonks though… In fact, you’ve inspired me to try and find a local club - I’m sure hubby will enjoy it too.

Happy shopping!

Kx

7

Hello again

Well another milestone has passed - I have informed all 16 staff at the office where I work 2 days a week that I have MS. Quite a relief as I know several of them have been worried about me. Mind you my boss who is not terribly observant hadn’t even noticed my limp! It was quite draining though and I felt quite tearful that evening - I guess it feels real now.

Anyway to cheer myself up I went shopping with my husband the next day AND, fanfare please, managed to find a pair of fab dark brown patent FLAT knee length boots. If you’re interested they were from a Hobbs Outlet shop in Swindon and were half the original price. Very comfy and quite glam.

Mind you was wiped out completely after a couple of hours limping round the shops - despite the frequent stops.

Now methinks I need a new dress to go with the boots…Oops just remembered I had to give that spare £50 to my student son to pay his share of a gas bill so maybe not.

Hilaryx

.

8

he he thats great news about the boots. I must say there is quite a good range of flat boots around at the moment. I have to wear flat shoes for work (the rules, not linked to MS) and have been very pleased this winter with the range of boots. Perhaps you could pay your sons gas bill and he could buy you the dress for xmas!

9

Well done on the boots success :slight_smile: And for getting the “telling the office” out the way - a big hurdle that should make life a lot easier :slight_smile:
(Watch out for people behaving weirdly - usually best to stamp on it early on so people treat you the same as ever, except maybe with a bit more consideration.)

Karen x

10

Thanks Sheena - though I won’t hold my breath for an expensive present from my son!

Ermm - what kind of ‘weird’ might I expect Karen?

Hilaryx

11

Hopefully everything will go back to normal, but it wouldn’t be surprising for one or two people to either try too hard to be supportive, to start reading too much into things that have nothing to do with your MS, to start confiding medical things to you or asking personal questions of you, and goodness knows what else. Nowt as strange as folks after all!

On the other hand, it could all be absolutely fine!

Kx

12

I am not Dx but I am self employed dance teacher. I have not told my clients (childrens parents) anything but those that know me better, know there is something wrong if asked I answer the question but in honesty although my GP thinks all will be relieved a few years down the line, I can’t tell them or anyone else because I do not know myself.

I do worry that they will go else where as they don’t feel I’m up to it, I have arranged that younger children are taken by another teacher ( I employ) because I find it it difficult to demonstrate, but the parents seem to want me to teach them.

Shoes in the summer I bought some lovely shoes by hush puppy 2 pairs same style one pair plain leather and the other white with a lovely flower print on them most importantly Flat! I think they came from shuh which have a great online store.

Twist

13

I’m afraid I dont have any advice about critical illness cover or coming out, but agree about shoes!

I find boots the best solution, glad you have found some you like that are comfy. I wear boots all the times, have long and ankle ones and they are great, though still love taking them off at the end of the day! I can’t wear ballet flats as they flip off and I don’t notice, can’t feel my feet very well!

14

Hi Ladies

Glad I’m not the only one with ‘shoe issues’ . I agree that boots seem to be the best solution for winter - and I’ve been naughty and just ordered another new pair. Will stop now…maybe

I too have found a dress agency where I can take some of my shoes and clothes - and maybe raise some money for all the therapies I am trying, or for more new boots!

Welcome to the Forum Gins - we seem to be at a similar stage so hope we can support each other coming to terms with this.

Take care

Hilaryx