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Wife diagnosed at last!

It is now a year to the day since my wife had an emergency appointment with a GP and the seed of Possible MS was planted in our heads and She has just been formally diagnosed 3 days ago on Wednesday!

On that day she woke up with really severe symptoms (on top of other previous problems), some of which have subsided a bit but she has been left with very poor walking and now uses a crutch and still cant go far and is quite limited in what she can now do generally(drives me round the bend ,trying to do things as she says not fair on me as i am at work all day!).

Her Aunt is in a wheelchair but we didn’t then actually know why but asked and she has Ms also.

Been a long journey with a few delays along the way.

March 17th 2017

Gp(not hers) raises request for head Mri and writes to Spinal surgeon who wife had seen for original problem with neck/back.As well as doing bloodtests etc to rule out some other things.

May 20th 2017

Mri takes place

May 25th

Medical records show Mri report recieved stating abnormal,no further action,patient does not need to be informed and was then archived by Wifes GP. The mind boggles as to why anyone would think a patient wouldn’t want updating if they had such severe symtoms and had needed head MRI and had MS mentioned as possibility!

7th June

Wife chases results and has telephone appt with a Gp who tells her Mri shows non specific features suggestive of demyelination. Makes her appt to seen own Gp.

13th June

Sees own GP who says probably needs to see Neurology,Spinal consultant will refer,Gp agrees to chase review

24th July

sees neurology registrar, who really seemed good and gave a verbal diagnosis of RRMS based on history ,examination and Mri report but cant see scans himself as done in a neighbouring nhs district. Mentions Dmd’s etc and Says we will get an appointment to see him again in a couple of weeks.

4th Sept

Return for next appt and see a more junior doctor who tells us other one has left! Scans still haven’t been viewed etc. Seems like a total waste of everyones time.She says they will get them and view and discuss in departmental meeting in 2 days. We don’t have much faith they will suddenly get scans they haven’t managed in a month so start making arrangements to get copies ourselves.

6th Sept

Scans are viewed and Ms specialist neuro agrees to see my wife in his clinic.

6th Nov

No word,so i suggest my wife chases.As suggested by myself it turns out The junior hadn’t put it through for an appointment, a simple clerical error Delays things by 2 months!

14th March 2018

Finally see the MS specialist who is very apologetic about how long its taken but is able to show us and explain the 2 lesions shown on head and spine MRI’s and give RRMS diagnosis.Apparently we will get letter in 10 days.Talk of DMD’s, neuro physio ,Ms nurse.OT’s etc and now properly in system will get support. Wait and see i suppose!

For anyone going through investigations now i would say don’t be too polite and patient and try and get possible timescales on things and chase things up if needed.

I Really don’t know how she has coped with this year on top of more than a year before having accident at work and eventual dismissal as a result!

OI73

it’s a poor show when professionals let things slide like that.

thankfully she has now got a diagnosis, albeit a bit delayed.

the other cr*p such as dismissal will pale into insignificance now.

although there may be a case for going against the DDA.

I think we need to be grateful to that original GP who was on the ball so credit where its due in that respect, MS hadn’t crossed our minds at all. I had noticed my wife stumbling for about 6 months before but we put it down to"dopyness" from all the painkillers for the original spinal injurys to neck and back. The work things gone now, i made her and helped fight the b*****ds as far as was reasonably possible,Although i believe she shouldn’t have been dismissed at time,there is no way with her current disabilities she would be capable of doing work now,so with hindsite its ok.I went right through all the companies procedures and made sure they jumped through all the hoops required and delayed the dismissal for about 6 months. We certainly drew attention to the equality act and made noise about a tribunal but with just my wage we couldn’t really afford to risk it! We decided that before her appeal and didn’t bother to turn up but it still went ahead as i knew it was a real nuisance to them as it had to be heard by the people at the very top who all had to travel and be in same place at one time and sit there wasting their time waiting to see if she turned up(i knew this cos its all in the policy’s/procedures). We also gave the industrial injury case to solicitors to attempt that route but that has recently been dropped as only 50/50 weather negligence can be proved!

O173. Completely understand your frustration. Thing is (apart from the work issue) doesn’t seem unusual. I can relate to it certainly. I would say though that I always try and be polite but I am always assertive and chase things up. Interesting, on the newly diagnosed day, the medical people stated people who were proactive and asked questions tended to have better outcomes. So, your wife is in good stead and with your support it will go a long way. Ask if they do a newly diagnosed day. They are run by the mssociety but you only receive invites through the hospital. I certainly found it informative, not so much as what they told you as the ability to ask questions and to hear other people’s questions. I think they run once a year here. Best wishes.

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Hi Ol, I’m glad your wife has (finally) been properly diagnosed. Even if it’s just so that she can now access all the services she should have already had for months, at least. And now she can start a disease modifying drug (DMD). I assume you and she has seen the DMD decision aid, but just in case, https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid She is unlikely to have completely free choice, it will depend on how active her MS is deemed to be as well as what prescribing centres have been set up at your local hospital. Best of luck to her and you. Sue

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Thanks we hadn’t seen that but she has been reading a bit on them and has an idea of the one she might have liked to try but from previous letter following the nearly diagnosis in september they referred to interferons and its not one of those type! I did query this with the neuro at latest appt and he said interferons so think it might be limited to those only.

We will have a look together some time,i know she definately doesn’t want to go in hospital for infusion but is ok with injections if i help her!

Thankyou

If they are offering the beta-interferons, Copaxone or Aubagio, if it were me, I’d pick Copaxone. You actually have to inject more frequently, but they are baby needles, subcutaneous (under the skin) and there were literally no side effects for me. And from what I’ve read, that’s the case for most people so long as they rotate the injection sites (you go for the fattest parts of you, for me that was no question my bum and my thighs). I would also suggest not using the ‘autoject’ device. People have more injection site reactions from the autoject as it fires the needle quicker than if you slowly slide it in. And if she has you doing the needles then it’ll be even easier. I was relapse free on Copaxone for 5 years and for many people it’s a lot longer than that. In retrospect I wish I’d just stayed on it. It might have done a bit more than the nothing I’ve ended up with from side effects caused by other DMDs. (Now I’m SP I’m on nothing anyway!)

I don’t particularly like the look of the potential side effects from Aubagio, although that might be attractive since it’s a tablet rather than a needle. But it’s really a question of what your wife prefers and what advice she’s given by the MS nurse and neuro.

Good luck Ol

Sue

That’s the one she likes the sound of, She commented the other day that she had heard the tablet ones had some pretty horrid side affects and would be ok with injections if i helped her.I said its ok if they the epi pen type.

I want to help her of course but would be quite nervous at the thought of having to do proper injections for her.I guess we would get some training on this for me to get confident(and so she could have confidence in me!) before we started.I do my best but a Nurse i am not!

It’s way easier than you think. The first time is hard, but you soon get comfortable with it. The needle is about 3 millimetres long. Honestly. And the injections are all made up, you just pop one out of the container and quickly stick it into a bit of your wife that you don’t have to admit is a little bit fatter than the rest, you just vary the injection sites.

And you will be shown how to do it.

You’ve gone past the difficult bit, that getting diagnosed. Now you just start the DMD and then she can concentrate on normal life. Maybe some physio to get fitter and to keep as fit as possible.

Sue

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