MS Nurse ?

I`m seeing my MS Nurse for an annual review on Tuesday. Should I be asking certain questions or should I let her take the lead. Apart from fatigue my condition is a lot better than a year ago.

My partners Dementia diagnosis usually takes prominence over me as it is a big part of my everyday life, but this is my appointment and should be about me.

Not too sure how to direct the conversation.

That’s a big something that you’ve seen some improvements, but I’d say yes, talk about you at your review. I presume you accompany your partner to their reviews, and because your partners situation involves and affects you, I think it’s reasonable to discuss things relative then at their appointment. Obviously, caring for your partner must put some strain on you and can’t be dismissed but just be direct and say what/who you’d like to discuss. Sounds too straight forward to me, so I’ve probably misunderstood your problem. What are you doing to feel better that I’m not! smiley face.

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Im PPMS. Apart from fatigue, all my other symptoms have improved 85-90%. Fatigue has stayed the same throughout. Looking after Dee is draining and very hard work but it certainly keeps me on my toes and maybe that has something to do with my condition. I dont really have time to dwell on my own MS.

in an annual review you’ll be telling the nurse what has happened in the past twelve months. If there are any issues such as fatigue then he/she may be able to help. I would make a point of not making any reference to your partner -

Hi Scudger, I admire your positivity, you have a lot to deal with.

Do you have help from anyone? There are Day Centres that you and Dee could attend in different centres, with everything provided.

Your MS nurse should be told of Dee’s illness and its effects on you! Be very honest & put yourself first (very hard to do). Don’t feel guilty because if you exhaust yourself, you’ll both need 24/7 nursing care. So your chat will mention Dee but YOU’LL rightfully be the main topic. The MS nurse can arrange for someone to visit you at home and there should be support groups too, for each of you to attend.

I have PPMS too, and spent the past 2 days in bed! Too worn out to lift my arms (no hair brushed & drinking only half mugs of coffee . My hubby is fab at cooking & I’ll tackle the laundry when I feel more awake. Take care on Tuesday Scudger, I wish you well.

Chrissie x

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If you get any PIP, or careers allowance, or whatever, I would not be too enthusiastic describing MS improvements. I don’t know from experience, but I have read that people’s payments may well be decreased if their MS symptoms improve…


[quote=“krakowian”] I would make a point of not making any reference to your partner - [/quote] Seeing as it is the biggest part of my life I have to disagree with you. They already know about her from previous appointments.

Hi Scudger, I know fatigue is your biggest PPMS problem for now, a break from the many other symptoms. Caring for your wife with dementia, giving you no time to dwell on your own problems, is pure altruism!

MS Nurse Appt. the main topic. If you have a good relationship with MS nurse, when she greets you & asks how you are, maybe say “fed up doesn’t cover it” She’ll ask why & how and you could say “there’s good, bad & indifferent news which I feel is spiralling out of contol” Say “I’ll briefly mention the problems I deal with every day and night for Dee but obviously need the main focus on myself”. Ask her to make sure you stick to the time allowed with no more than 10% given to Dee. Maybe take a list of all you want to cover. Perhaps discuss local support groups that you could attend, any subject you’re interested in, meeting other people. Inform her of how you feel exhausted.

As Loulla said earlier, can you attend Dee’s appointments & explain your difficulties to see what practical options you have?

Good luck on Tuesday.

Anne, I doubt you’ve read of any PIP benefit being reduced or stopped in cases of confirmed PPMS. It’s quite rare & creates permanent damage without any treatment to cure, slow down or even stop the progression. Any relief is temporary but invisible damage continues.

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Had my appointment today and very worthwhile it was. She has recommended to try Baclofen in a small dosage to see if it helps in any way. Also she confirmed what I have been thinking for some time about the whole health and benefits system. IF YOU DONT ASK YOU DONT GET.

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I can imagine medical research into the effectiveness of DMDs will be affected by the changes in DLA to PIP.

If you are asked, “Are you better or worse on the medication?”

There is now a financial incentive to say “worse” to avoid living in poverty, in a cold damp home and going to food banks.

The government should have kept DLA.

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Good to know the focus was on you today. Hmm, speaking of “if you don’t ask …”. Have you asked about being allocated a Social Worker to help you to get some help for your wife?

I hope the Baclofen helps.

I have asked for an MS nurse; an Occupational Therapist; a Neuro Physio… I’m on their waiting lists… and things have deteriorated greatly since I saw the Neuro with problems with one leg… My GP said she would write to my Neuro… I have a telephone appointment with her tomorrow to see what’s happening…


Edited: Appointment was cancelled by her for some reason or other…!!!

It’s recently dawned on me, IF YOU DONT ASK YOU DONT GET. When diagnosed, I had mistakenly put my trust in those that I was directed to, believing it would be their goal to sort me out the best they could. Disappointing to realise that doesn’t seem to be the case. I’m glad your appointment went positively. X.

Hi Loulla

I`m a 100% sure it all comes down to money and if they can save rather than giving it away they will say nothing unless you make a strong point of asking and following it through.

Ive learnt this from all of my own experiences and its an unfair game.

99% of all of these so called Specialists will tell you the obvious but not what you really want to know especially when there is cost involved.

I now know what to do.

So true. I asked for a better powerchair - a narrow one to meet my needs and I got one. Even

thought it was more expensive than the one offered. So, know what meets your needs and ask for it.

Especially with the new wheelchair budgets.

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I must start my fight now, too…

5 minutes ago, my doorbell rang, and, as always, I looked out of the window before opening it… IT WAS A NURSE… I was soooo excited. I got to the door as quickly as possible, opened it and delightedly said, “Hello”…

The nurse, a District Nurse, asked if Adam ******* lived here… What…!!! NOT MY NURSE…!!!

So… at least I know that we have a District Nurse Service. She said that I have to contact my GP… WELL, I HAVE… but have not explicitly said, “I NEED AN MS NURSE, NOW…”

Personality change coming, a far more assertive MSer… NO MORE MR NICE BABY…!!!

The help I get:

GP - meds.

Neurologist - diagnosis and MRI assessments, meds.

MS Nurse - neuro appointments, Care Plan for PIP referral to Community Rehab Team.

Community Rehab Team - OT and Physio.

Borough Council Adult Social Care - Care Plans for PIP - assessment for extra care Personal Budgets, OTs for rise and recline chair, ramps and rails and bathlift.

Continence Adviser - for which meds etc.,.

District Nurse - assessment for free pads delivery and ID number.

NHS Wheelchair Services - new powerchair and manual wheelchair/cushion every 5 years. [or as needs change]

[Because they now know me, I have self referral phone numbers for all of the above services]

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I only have Gabapentin, supposed to relieve nerve pain, but I don’t think it does anything for me.

I have googled ‘Balclofen’, and it appears to be a muscle relaxant. Is that what you want it for…??? I want something to relieve spasms when most of my body, now, goes rigid, stiff as a plank, comes to mind. So, this is MS, but I am really worried because my heart has muscles, and it is within this plank…


PS. How do you get ‘I have MS’ and a photo to appear under your ID…???

That makes me feel quite invisible, poop!

Me too… but more determined now…!!!


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