Just been diagnosed PPMS, question about MS nursing service;


I’ve finally been diagnosed with PPMS (after a 6 month wait). Feel slightly strange, but also relieved not to be fretting any more. Kind of a sense of closure. (FYI, positive c-spine and brain MRIs, negative LP but 6 years of worsening symptom progression).

However, I’m slightly confused as to the role of the MS nurse/nursing service. During my 45 minute consultation the MS nurse sat there and took notes but did not say anything at all, even on leaving; I was just given a brown envelope full of stuff to read. No mention of anything. Do I just call the number in the pack when I need help, or should I expect a call? Will my GP need to see me? (Neuro consultant said he’ll see me again in 6 months and has prescribed baclofen and steroids in the meantime).

I guess I’m just experiencing the classic post-ms-diagnosis ‘what happens next then?’ anxiety, but any words of advice from you more ‘seasoned’ PPMS crew would be much appreciated.


Hi there, Sorry for your dx, it sounds like you were expecting it but the reality is a shock. I have never seen an MS nurse just got a referral through her for the neurophysio so I can’t help there. Glad that your neuro is seeing you again and helping with meds. It sounds as if you are receiving decent care! I hope you have lots support from family and friends - they will get you through! Remember that we are here to rant and rave at if you need it. This dx is not the end of the world - you just need to adapt to the change. You will feel odd for a while - it does take a long time to get your head round it but you’ll get there. Just take things a day at a time, don’t look too far ahead! Look after yourself and make sure you get plenty of rest, Teresa xx

Hi Hon… well it’s not a club I would recommend joining… but like us all you had no choice!

It does take a while to get your head round it… so remember what we’re always saying on here… one day at a time.

Don’t think about how your MS might be a future date… there is no way of knowing and remember that lots of us with PPMS progress pretty slowly. Some people even stop progressing altogether.

The next bit of news is not so good… I’m sorry to say but for us PPMSers we are left pretty much to get on with it on our own. Not a whole lot they can do for us… at the moment that is… good chance that will change with all the research going on.

Good to see they are trying steroids… but they don’t usually do a whole lot for PPMS… but you might be different. We are all different and what works for one person might not for another. Same with symptoms… you won’t get every PPMS symptom in the book… none of us do. You have your own unique MS!

Your MS nurse was extremely rude! Ok there’s not a lot they can do but she could have introduced herself and said that she was there whenever you needed to contact her. At least mine has the manners to say that!

Yes… if you have questions you can contact her… although the gang on here know more about PPMS than anyone!

I see my neuro once a year. Some PPMSers don’t see one at all… so that really is a bummer I know but that’s why this board is such a lifeline.

The GP should be informed by your neuro… but you might want to inform him/her yourself also. GP’s know diddley-squat about MS but they are useful if you want pain med’s… although they will probably want neuro to give go-ahead.

If you are on benefits you will need letters from the GP so it’s worth seeing him/her every so often just to remind them who you are and what your symptoms are. They are also useful for referrals for OT, physio, wheelchair services… etc etc etc… oh and not fogetting counselling which really can be useful if you’re having a tough time coming to terms with it.

Most important thing to remember is this: PPMS is not the end of your life. It is a massive change to your life but you are able to live with that change… and you will be able to still enjoy your life. OK it’s not what you planned… but life goes on and you will get used to it… promise.

Just had a sneezing fit from hayfever and knackered now… hope this helps… come back whenever and ask us whatever… or just rant, cry, laugh, whatever. We’re all here for each other.

It’s great to have you in the gang!

Pat x

1 Like

Hi Clucker pigeon, welcome to our club, sorry you have qualified to join. Just like to agree with everything Pat said. It’s definately worth having an MS nurse . Mine has helped me with all sorts of things, like getting grab rail fitted in my home, filling in benefit forms etc.


Hi Clucker Pigeon So sorry about your dx, as everyone has said you’ll get more help here than anywhere…I do ! Sounds as though you had bad luck with your MS nurse, mine is a god send, I didn’t realise until I came on here that some MS nurses and even some neuros don’t see those who have PPMS or SPMS. I asked mine at my last apt why she saw me, she said its not all about DMDs it about support! I see her every four months and its the only medical apt that I actually look forward too! Ive seen her now for ten years and although I’m old enough to be her Mum she feels like a good friend. If you live near a very big hospital you maybe lucky,in that, sometimes, there’s more than one. My last point, it may or may not apply to you, when I was diagnosed I wasn’t told that if I had a mortgage I should check for long term illness cover ( that’s not quite the correct name…sorry can’t recall exactly

Hi Clucker Pigeon, sorry to hear of diagnosis. I was wondering if your neuro mentioned anything regarding the negative LP. For example what % of people with PPMS have a negative LP. I have a negative LP, one c-spine lesion, progressive right only leg spasticity. Did have one attack 4.5 years ago which seemed to be the start of problems. I dont seem to fit any criteria although I did have radiation treatment in 1990 which seems to make picture more complicated. Although one neuro thinks it is the radiation that has caused the problem I have not been able to find any reports of radiation damange to spine for people treated with mantle radiation for hodgkins Lymphoma. I even contacted the UK lymphoma society and they have never heard of ot being connected to the treatment that I had. The second neuro thinks the radiation theory to too far fetched also but cant seem to put MS in the picture either - yet anyway. He did say though that sometimes a negative LP can appear early in RRMS but in progressive MS it will be positive because the immune system is constantly in action against the nerves/myelin.

I too am on baclofen. I have also recently been given Tizanidine which I think is better for me. The main issue I have with walking is that I cant bend my knee enough in swing phase to clear my foot. Stiff knee gait - I think the problem is with the quads not relaxing enough. I know my quads are an issue because if I sit on a table and straighten my right leg I cant just release my quads and let the leg swing down with gravity. I really want to try botox but neuro thinks it will make it worse. My calves are tight too but I feel if the quads were sorted I would walk a hell of lot better.

You should also ask to be referred to a neuro physio.

Moyna x

Hi Clucker Pigeon

I was diagnosed 3 years ago and then diagnosed as PPMS 18 months ago, i have had the symptoms of MS since i was 19 but i was only diagnosed 3 years ago’ i am now 51. So it can be a very slow progression but it does seem to be progressing quite nicely now.

It is a relief to finaly know then you can get on with your life, there is a lot of things that can help and don’t be to proud to try different things, i walk with a stick but i did’t want a stick ,now i am going to pick up my wheelchair tommorrow and i am looking forward to it as i know it is the right thing for now and it will help when we go out.

I am sorry that you are not happy with your MS nurse, my MS nurse is absolutely brilliant, if you are not happy then complain to the hospital, we don’t complain enough in this country, but first try and contact the MS nurses at your local hospital and see how they respond, who knows it might have been a bad day and we all know about bad days don’t we.

I am on Balofen and pregabalin and three statins, i see my neuro once a year and my MS nurse 2 or 3 times a year or whenever i feel i need to speak to her with worries about new symptoms.

However if you have any worries then you can air them on here as like snow leopard said there is an amazing amount of experience on here and most questions will be answered.

Well i hope you feel better about things soon, remember you can always sound off on here.

Take care



As everyone says welcome to the club nobody wants to join , however we know what you are going through so in that sense welcome to our club , i would say don’t give up on the MS nurse , i had a bad experience the first time she basically took my crying for depression rather than lack of sleep next time went back i was aware of what worked for me, she agreed with me helped me with some stuff regarding what was on offer on the NHS, if i need her again i will go back

I have had PPMS for nine years, i no longer work but do a lot of volunteer stuff, and go swimming most days, saying that my mouth gets the most excercise because of the talking we do again another club of folk who now retired want to keep active, but the laughs we have are a great tonic for me.


Thanks for the support guys

To be honest, I’m not annoyed/upset with the nurse (who seemed perfectly pleasant), just very confused as to what is/was supposed to happen. Like most people immediately post-diagnosis I just felt, and feel, slightly bewildered.

Anyhow am now on third day of 500mg steroids, which does not seem to be doing very much. Legs still twitching badly at night, mobility just the same. And it leaves a horrible taste in your mouth all day so that you can’t taste food properly. Am hoping the baclofen, which I’m allowed to take as from Tuesday, is of more use.

Guess I’ve just got rewire my entire being onto the ‘just wait and see, no one knows what might happen’ mode. Which is fine if you naturally have a fairly laid-back of philisophical character. Which I do not…

I don’t want to offend anyone. I don’t know where to turn or what to do anymore. My son is 41 years old he is convinced that he has PPMS. However, has not been diagnosed. He has had several test and seen several great doctoroom, that deal with MS. He even flew to Cleveland and saw 2 doctorspinal there and had some testing done. None of these doctorsites are giving him the diagnosis. Here is where, I think his thinking has gone south. He was diagnosed with bipolar about 18 months ago when all this started. He will not treat the bipolar and does not believe he has it. But he continues to to convince himself of having PPMS, he says his feet and handsee are always burning, he says he can’t sleep that he has restless leg syndrome and he tells me he’s going to be in a wheelchair in 5 years. I keep trying to encourage him to get counseling, but he gets mad at me. Some of the test he has had for MS have had some abnormalities, but the doctors tell him there nothing to be overly concerned about. I’m sorry you guys, but as a mother I hate seeing him acting like this. He is very very physical active, his pain has not stopped him from being able to do things. He is now talking about going to another country to get stem cell procedure he is spending so much money on this. I guess I am looking for help,from you, to see how I should help him. I’m so worried he is going to do something stupid cause, he get so depressed.

I don’t know enough about the American medical system to offer you any good advice. This is a UK based site so you might be better maybe looking at another site for specific advice.

Good luck

Sonia x


I can understand your confusion about the role of the MS nurse. It does sound as though she could have been a bit more proactive about putting you in the picture. Presumably you have contact details for her?

Mine is always on the end of the phone when I need reassurance or help, and she is great. She also sits in with the rehab neurologist when I see him, and there is a three way conversation, she makes suggestions quite readily.

In fact I have access to two MS nurses because I have NHS Trust border issues (too complicated to go into here!) so I see my clinical neurologist who first diagnosed me, in Milton Keynes, every 6 months, and the MK MS nurse sits in there. Then I also see a rehab neurologist with my designated MS nurse in Northampton.

I was given the option of seeing either of the neuros; I asked if I could continue to see both and that was fine. However, I had no choice of which nurse to refer to- the Northampton one is ‘mine’. But as I say, she is very accessible, knowledgeable and supportive. For instance, she has helped a lot with my bowel and bladder issues.

I don’t see why you shouldn’t phone her for a chat just to establish more of a relationship.

Good luck, anyway-


1 Like

D’oh! Just noticed that this is a long gone thread- sorry folks


Hi Pretty P, sorry you are going through such a difficult time.

Has your son had a lumbar puncture? IF, as he believes, he has PPMS (or any type of MS) the lumbar puncture would show that his immune system has been active in his central nervous system, a sure sign of MS.

I wonder if you can bargain with him, say have the lumbar puncture and if it comes back negative you have to have counselling for your bipolar.

I can’t think of what else you can do. I assume it’s his own money he’s spending? Whatever you do don’t start financing this yourself. I think you need to take a step back. I have a 44 year old son so I can just imagine how difficult this is to do but luckily he’s not doing anything dangerous (ie using drugs or harming himself) so perhaps you just need to let this play itself out.

Try to bargain with the lumbar puncture but also try and work on ways to keep yourself sane. However hard it is, remember, he’s an adult & you can only do so much for him.

Hope this helps.

Pat xx