This is now my 5th attempt tonight to say hi, (that’s in the last hr) I’m messing all my text up basically not functioning so I’ll keep it short. Ppms diagnosed Dec, it seems to have gained a speed of fast and furious over the last week, rendering me incapable of the basic functions’ missing work’ even doing the washing up, I have an appt on Friday due to the sudden deterioration’ does this happen with ppms?
I’m also only sleeping for 3-4hrs in 24hrs is this normal?
Hi Pollypocket… it happens usually when something else is going on… like a virus or an infection. Bladder infections are very common with MS and can make symptoms worse. Virus’s often don’t act like a normal virus, so for instance if you have flu you won’t necessarily be sneezing with raging fever… it could show itself as a massive deteriation of symptoms. Also, quite recently a new ‘type’ of MS was added… it is a relapsing form of progressive MS, called Relapsing Progressive MS (RPMS… I think that’s the right way round, it might be PRMS). I am very glad you have an appointment on Friday… ask neuro about all of the above… and most important Polly… keep in mind that a sudden deteriation like this is very unlikely to last. PPMS like the other types of MS can go up and down by the day or the week, and generally PPMS with will not suddenly get so worse and not improve again. Take care hon and wishing you much better soon, Pat xx
Also Polly, regarding the sleeping, lack of sleep can really make symptoms much worse… but it is a very common thing with MS. Talk about this with neuro and get something to help you sleep. Have you tried Night Nurse? Get some today if you can and try it tonight. Thinking of you, Pat x
Hi Polly
Pat has given you great advice, and I agree things are much worse when you have an infection, but will improve.
Glad you have an appointment this week, hope you feel better soon, and I cant remember if I have already welcomed you (brain fog, sorrry) but in case I diidnt, welcome to our special gang.
Pam x
Hello Polly, another thing I can add is that you might need to re-assess your capabilities and think ahead. You may well be doing this already (and I apologise if this is so) but things are now obviously different. I’ve had to be realistic about what I can do and what I need help with. This actually changes on a daily basis as our condition can react to some of the factors Pat pointed out. Try to think about the physical impact of everything you do-if one thing gives you the slightest concern, try and delegate if you can. I’ve had nearly half a lifetime of falling over and suffering from aiming too high. Anyway, a warm welcome to you and perhaps prepare a list of things to ask the neurologist. This website is very good for prompting relevant questions. Best wishes, Steve.
Thanks for your feedback guys, you have helped so much,I hope I can return this in the future,
My g.p has been very supportive this week, he rang me to see how I was. He couldn’t find any infections or viruses on this occasion, I’ve finished my course of steroids now just left feeling very weak.
Steve,you are so right ! I need to accept my challenges and look at ways to live a more full filing life & stop resisting the help I needed for sometime now, I have been a full time lone working mother for the last 12yrs, 2 out of 4 of my kids have moderate autism, i,ve never relied on others before, I love my job but accepted back in September I physically & mentally couldn’t cope with it all anymore, so I went part-time, I wasn’t diagnosed with m.s then, now i,'m on the road to acceptance I will get all the help I can. Xx
Polly I can relate to what you’ve said, I’ve been a single parent for 16 years, was a nurse who loved my job, had my own home and was stubbornly independent. My family lived overseas so I just managed and muddled along. Over the past few years I felt very unwell and thought I was either a hypochondriac or decrepit as parts of my body were failing. I woke up one day to go to work and couldn’t walk. After a long period in limbo I got my dx in June 13 and I’m struggling mostly to accept the fact that I can’t do everything. You do learn, some of us more slowly than others, me being guilty there but I’m trying to learn not to beat myself up over it.
It’s hard, I’m not denying that, but the more you fight it the worse your symptoms become. Be kind to yourself.
Cath xx
Met my consultant yesterday,registrar,O.T,Physio & MS nurse, they exhausted me! I found out that I have only a few lessions on the brain, they are mostly in my spine which they said is typical of ppms which I didn’t know. I shall be starting on pain killers,vit D, and having an assessment for help with my drop foot and fatigue, a scan showed that I am retaining urine going back in a month to re-test. The nurse is sending me a letter for my employer to explain that an occupational health referral at this stage is too soon and the stress of this isn’t helping.
I have been given a sick note for 4 weeks, told to take time to digest, make a request for O.T assessment for home equip. Get an eye test for distance, my blurred vision is due to fatigue.
Pauline xx
All sounds positive Pauline! Yes true, many people with PPMS have more lesions on spine… I’m one with more lesions on brain… (one of the reasons I think I might have had a very mild RRMS for years and is now SPMS). I’m so glad you’ve got a good team and doing all they can for you. I also have blurred vision and have been told the same, due to fatigue, and I do notice it’s worse when my fatigue is bad. Very glad you have 4 weeks off darling. Try to use this time to really think about how you can reduce stress and tiring tasks from your life. What can you delegate to someone else? What are you doing that isn’t really necessary? When it comes to housework, think about things that don’t really matter and can just be done occasionally or not at all. In other words, lower your standards! Also, consider how you can make things easier for you to relax. For instance I have everything in my bedroom that makes it pleasant to stay in bed… TV, radio, books, etc. So rest as much as you possibly can… it is the only thing that helps fatigue… and think about the above… reorganising to make life as easy as possible. The trouble with us women is we like to do it all ourselves… but with MS it just ain’t possible! If you have a partner and kids, you need to sit them down and tell them this. You need all hands on board! Take care hon… glad it’s all getting sorted for you. Pat xx
Hi Pauline & welcome
I started a new contract on Tuesday (;m self emp) and was in a bit of a state of terror last week, as I’d had such a bad few weeks… but I finished a course of antibiotics at the weekend and when I saw my MS nurse on Monday she did say give it a week or two as it was likely effects of the UTI, I did leave feeling a bit dubious…
But as tiring as I’ve found this week, it actually was OK, I didn’t actually fall over and I coped alrht with learning new systems and meeting lots of new people
It’s the first UTI I’ve had since diagnosis (last April) and it really does throw absolutely EVERYTHING!
I hope you find that you do bounce back very quickly.
Thinking about last year, I can safely say that it took a few months after the PPMS appointment that I could manage a few days without tears… hope the 4 weeks leave give you a bit of time to digest and level your head over it all
Sonia x
Hi Pauline
Glad to hear things seem to be getting sorted out a bit for you, in the meantime, rest as much as you can, and accept all the help that is offered.
Pam x
Pauline I’m so pleased you’ve got time off work. You probably need this. I’d suggest you also think about applying for DLA. You can qualify for that even if you’re working as it sounds like you may qualify. My union sent me a booklet I can e mail you if you want to help you see if it’s appropriate and also how to fill the forms in. The money really helps, especially if you’re only getting sick pay. The sooner you phone to ask for the forms the earlier they’ll back date the payments if you do qualify. It might help to phone the benefits and ask for the forms on Monday so your payments would start then. I know how hard it is when you’re a single mum, which is why I’m suggesting it.
The OT is a huge help making life easier for you, mine’s wonderful. They have so many gadgets available. I also retained a lot of urine and now self catheterise which is great as you get to empty properly allowing you to go out or to bed and sleep through the night. Things will fall into place. I’m sure your poor head is buzzing at the moment but it gets better, just make sure you rest and if you’ve any questions or need to rant then this is the place to come.
Please let us know how you get on, remember we’ve all been where you are now and understand. Take care
Cath xx
What can I say but a big thank you Cath,Pat,Pam & everyone else,you have helped more than you know. I have the new PIP(DLA) form it arrived on Saturday, Ironically my work is support based making social care , Pension & benefit refferals and maximising others quality of life. Someone has recommended a website named work & benefits it’s got a picture of a dog on it , apparently they help with the correct wording on the claim forms, has anyone used the site? I plan on subscribing tomorrow, there is that many changes to qualifying criteria its quite daunting. Any info or experience of claiming PIP would be great.
Pauline xx
It’s called Benefits and work. It’s the BEST website to help with all benefit applications, appeals etc. the guides are step by step and explain how to describe your symptoms properly. Worth every penny of the membership. I wouldn’t dream of doing an application without their guide. Good luck Pauline. Most of us (I think) are still on the old DLA… But Benefits & Work have a good forum where you’ll read about others experiences with PIP. Pat xx
Cheers Pat, I’m subscribing tomorrow, hope life is treating you good 
Xx
Cheers Pat, I’m subscribing tomorrow, hope life is treating you good
Xx
Cheers Pat, I’m subscribing tomorrow, hope life is treating you good
Xx
Oops! Spasm…
So pleased things have improved for you Pauline …good luck…really hope it all works out well for you. Nina x
It’s great that you’re getting yourself organised, sometimes the hardest part is starting. You sound very positive and motivated which is good. Well done, chin up and we’re all here to help where we can.
Cath xx