new PPMS diagnosis

Primary progressive MS
1

Hi all, first post, (well i did start typing last night but the pc crashed after i typed loads).

my wife has been diagnosed with PPMS since oct 2011. since then there has been a continual deterioration in her mobilitiy. i suppose this is the progressive bit.

anyway, i was wondering, is it usual for your neurologist to say “i’m only going to review you every 12-18 months”. and is it standard for your MS nurse to see you every 6-12 months? the physio team have discharged her. my feeling is ‘there you go, now deal with it’.

so far i’ve found the majority of professionals involved very ‘relaxed’, i can’t even say they’re reactive let alone proactive.

its left me really confused and my wife very frustrated.

kind regards

jake

2

Hi Jake I was dx in Dec 2011 and the MS specialist basically said he does not want to see me again as there is nothing he can do for me. He did not even mention the MS nurse. It was the nurse in the room with him that gave me the card with her details on. I feel that I have been set adrift to just get on with it and I am doing my best to stay positive but am failing sometimes. I understand how frustrated your wife feels. You just have to keep going though, what other choice is there? Keep your chin up, Teresa xx

3

Hi Jake, firstly, welcome to the boards and a big hello to your wife.

Sorry to say but what you and your wife (please tell us her name) are experiencing is pretty normal. I see the neuro every year and there are many with PPMS who either don’t see one or see one every couple of years or so.

Within the NHS (as far as I know) physio is usually for a certain length of time, then stops. I think 6 weeks is the norm.

MS nurses are usually more flexible. Normally they give you their contact details and you phone or email them when you have a problem or question, and can make an appointment to see them that way also. If you do have questions or need advice, contact the MS nurse. They should get back to you. (Although personally I’ve learnt more about MS and had the best advice by using this site).

It’s not great news is it Jake. The thing is with PPMS, as you no doubt know, is there is so little they can do for it. No type of MS is curable, but for the other types, RRMS and SPMS, there are some drug treatments that help (though not much for SPMS I think). It’s a hard thing to say, but we PPMSers are left a bit to flounder on our own simply because there’s not a lot they can do. Symptom relief… ie pain relief, drugs to help muscle spasms, drugs which help with incontinence etc is the best they can do.

This can be a very depressing picture, but in time it can be dealt with. It’s hard to explain but you sort of learn to ‘own’ your MS and cope with it. For instance, does your wife have aids to help her mobility? Mobility scooter or wheelchair? You get to know what you can get free and ways of coping with your disability. Life with PPMS is tough, but over time it does become more ‘normal’. Coming on here and other MS sites can be a great help. Knowledge is power.

There is one drug that some people swear by. I don’t use it myself. It’s a controversial drug as has not been through all the tests… but, knowledge being power, you should research it yourself. It’s called LDN, or Low Dose Naltrexone, and there is lots of info on a site called ‘the LDN Research Trust’.

Hope we see you and your wife on here again. It really is a great help. One other thing, keep in mind that even though your wife is experiencing progression, it may not keep at the same rate. I go through periods of progression and then it stops or slows down for ages. Also, once you get a new symptom it doesn’t mean you’ve got it forever, although generally with PPMS mobility doesn’t improve. Most symptoms can come and go. It’s an unpredictable condition and is different for everyone so it’s a case of getting to know your own MS.

Take care both of you,

Pat x

4

Hi PatB has given you the same advice that I would. So let me add my two pennarth as well.

Life with PPMS can be really hard, I think, but there is still a life to be enjoyed. Getting as much help form the powers that be does help me.

i recently had a ceiling hoist, and a new electric wheelchair, from Social Services.

do make sure that your wife has an OT assessment to check if there is anything which will make both your lives safer and easier, eh?

luv Pollx

by the way, I still see neuros every year, but they aren`t much help.

5

Hi, many thanks for your informative and helpful replies. (and the warm welcome).

Gina’s (my wife) Ms nurse has been out today. To be honest, its the most constructive appointment we’ve had from anyone in the neuro team (the relaxation therapist is ace though).

we’ve just got to pop out to an appt, so i’ll feed back later tonight,

have a good afternoon

jake

6

Hi Jake,

It does seem to be quite common that you are left a bit to your own devices with PPMS, but has been already stated, there is not a lot they can do about it at the moment. The treatments for RRMS seem to be aimed at reducing the intensity, duration and frequency of the replases and since they don’t feature in PP then they are not a lot of use.

I have even seen it argued that it is a practically a different condition from RRMS, which is perhaps pushing a point too far, it is MS after all.

As had already been said, the progression is not always constant. Think of it as a series of uneven steps with perhaps a landing thrown in, so you are not always going down at the same rate and sometimes it seems to stand still.

MS is horrible, but what a lot of people with PPMS say is that they are grateful not to have to deal with relapses. The condition is far more predicable and you can at least plan a bit or even hold down a full time job.

I do know that there is an expert team I can call on if I need them but to be honest there is not much they can do for me that I can’t do myself.

I have found the MS nurse to offer good practical advice and I hope your did to.

Best wishes to Gina and I hope she hits a long plateau soon.

Paul

7

I know exactly how you and your wife are feeling!! My mums ms nurse and neurologist are exactly the same, they cant do anything and just leave you to suffer. They dont ever supply support when the person is diagnosed. Im so sorry about your wife, if i ever get any answers myself ill be sure to tell you and everyone. Incase theres a chance it will help someone out their :slight_smile:

Try to keep your chin up and be as positive as possible for your wife.

Poppy

8

Hi Jake

Welcome to you and your wife Gina to our small “elite” gang. I am sure these boards will give you both lots of useful information, as well as making you smile.

Unfortunately we are in the group that has nothing to offer apart from medication for some of the symptoms, but even though your lives now may be different to what you had planned, it can still be worthwhile, you just have to make adjustments what suit you both.

Take care

Pam

9

Hi Jake & Gina,

I wish I could say your story is unusual but as you’ve already found out it is all too common!

“You have PPMS (not even an explanation of Primary Progressive Multiple Sclerosis) what you’ve got is what you get, it will get worse but you’ll know about it!” That was my experience - no reference to a MS nurse, or leaflet to explain the disease and my husband not there as it was the only appointment he has ever missed due to a meeting at work.

On the positive side, you have found this site - it took me 2 years before I found it.

There are drugs out there to help with the symptoms but none to help with the desease itself. The one thing you both need to learn very quickly is - use your mouth and ask, don’t be fobbed off with non-answers, they are paid to look after people in their ‘care’ and so make them do their job. There are guidelines on the handling of people with MS (not that we are told that) and Social Services should assess both you and your wife (yes you, as a carer, have rights too). You don’t say where you are living or your age; normally PPMS strikes later in life (I was 57) so I assume that you are not youngsters and as such will have learned, through life’s experience, how to find answers to problems by whatever means possible.

Good luck on your new journey, it’s not one we ever plan to make but as with most things we are more resilient than we think, and just get on with life making the best of every day and learning to plan around our problems. If you live anywhere Birmingham NEC there is a Naidex Show 1 - 3 May. This is well worth a visit, admission free and you came book on-line; they have interesting solutions to anyone with problems, not just MS. We find it interesting and helpful to see any new developments in aids to people with disabilities etc.

Good Luck and luv to you both Ann.