new PPMS diagnosis

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

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 :)

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

Poppy

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.