Last reply 6 years ago
Feeling so alone with PPMS

Please tell me if there are any other PPMS’ers on Shift, I feel so alone sometimes as alot of posts seem to be for RRMS and DMD’s, I am sure there are many others on here, I know our symtoms are all the same but alot of our drugs are not, I cant think of anyone else on here with PPMS, alot of the personal details just say “I have MS” including mine
Pleeeeeese say hello if you can so we don’t feel so alone and can talk to each other it would be so very helpful to us all xxx

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Anonymous
6 years ago

Hey loulou,
Sorry to hear you’re feeling so alone. You’re right…most of the talk on here is about RRMS. You don’t hear a lot about the other kinds/stages.
Are there drugs of PPMS. I haven’t heard anything about treatment for PPMS. I’m actually quite curious and interested to hear from some people with SPMS and PPMS.

If I do have MS its looking like it might be a more progressive type…given that I don’t seem to recover from flare ups and I’ve just been getting worse and worse. We’ll see.

Hang in there!


markms
6 years ago

hi how you i have ppms as well hope your ok x


markms
6 years ago

hi sorry for the short reply at work and busy for a change lol yes i to have ppms how does it effect you you must be the first i have met with it hope your well? for ppms that is lol x


ness67
6 years ago

Hi loulou

Have you tried the ms society uk website ? It has various forums and one specifically for PPMS’ers where you can get support from others and I know from reading this particular forum they are a really friendly supportive bunch on there .. hth :)x


aardvark
6 years ago

Hi @loulou

I can imagine how you feel, the majority of people on here are those with RRMS – which is probably statistically correct, but that isn’t going to be any consolation to you. However, I have seen more PPMS and SPMS members than you’ve suggested are here, trust me – I’ve been through a lot of the active profiles over the last few months in my quest to be (as my wife calls it) “Most Popular”. Oh how she takes the piss out of me for that one lol.

And it is actually possible to specify the type of MS you’ve been “blessed” with, if you look at my profile you can see it specifies that I currently have RRMS. It’s quite well hidden, but I have no doubt you’ll find the magic button 🙂

Stay well

Mark xx


chueykooh
6 years ago

Hello loulou, don’t feel alone. We are all here with you. We all struggle in our own different way. Some people with ppms are doing better than some with rrms. In my research for MS drugs I have seen new drugs on the horizon for ppms with good results and soon, they will be available. Try to keep a positive attitude as hard as it is sometimes. Although our “ms drugs” might not be the same, most of our symptom drugs are. MS is one of those diseases that can go from extremely active to full remission in a short matter of time, you never know.


roni
6 years ago

I AM SPARTACUS!!! Ha, sorry, my weird sense of humour. I’ve ppms, dx since 09, but with hind site have had symptoms for years, so it appears (thankfully) mine is slow. Main probs are pain, balance, dodgy legs, numbness, blah blah. I’ve been told by my neuro that they don’t give any meds for ppms, they just manage the symptoms, hence the fact I rattle!!! Ha. How are things for you?


blankreg
6 years ago

Diagnosed with PPMS in February of this year, after taking a couple of falls and having difficulty walking any distance, so you not alone loulou. My MS nurse pointed me in the direction of the local MS Society group and it was a relief to finally meet some fellow PPMS suffers, so I’d recommend contacting your local group if you can.


loulou
6 years ago

Hi BlankReg, I did used to go to a group and although met a few “nice ” younger people, the centre quite frightened me! alot of much older people just sat lifeless in chairs waiting for their dinner!
Im sure Ill go back, but I dont want to be faced with that!
Sparticus, mine sounds like yours, I take LDN and that helps! I get foot drop and my balance is shot!
Chooeykooh, yes I must admit, some of the RRMS experiences sound awful, I dont think we PP get the eyesight probs, dont know which one Id rather have, None actually!!!!!
Aardvark, I think alot of people have just put i have MS on their profiles and not stated which type, perhaps ill get on and change mine.


markms
6 years ago

hi lou luo me again you say you have foot drop have you tried a dont up it goes round your ankle and on your shoe and they do one for when you dont were shoes x


loulou
6 years ago

Hi Mark, do you mean “foot up” if so yes, I have two of these, also an FES Walkaide, which works well when am not feeling so off-balanced!


roni
6 years ago

Loulou, where do you get your LDN from? (private prescription I presume) is it very expensive? My Neuro didnt know what I was talking about when I asked!


chueykooh
6 years ago

Hi again loulou, maybe we do take the same meds, I also take LDN. Yes, the vision problems are scary, I’m having trouble with that currently and I also sometimes wonder which MS symptom I would rather have than the vision problems and I come to the same conclusion as you, I’d rather have none of the problems including the vision loss. I hope the LDN works for you, it seems to be helping me with a few symptoms but I know the purpose of LDN is to stop progression and not reverse symptoms. How long have you been using LDN? @roni LDN is very inexpensive, I live in the US but my perscription cost me $16 a month! much cheaper than that toxic junk I inject myself with every day. 🙂


loulou
6 years ago

Hello Roni, I do get a private prescription and get the LDN from Dicksons chemist in Glasgow, the drug comes from the States though and it is expensive, my prescription is £220 ish, think thats for 6 months If I remember rightly, if you call them I am sure they will give you a list of private Docs in your area, I hope this helps you, please do message me and let me know if you do go ahead, it helps my bladder I know that!
I CANT believe your Neuro does know of it!he should do! some of these professional bodies amaze me, is not liscensed in the UK yet but has been used in many countries sucessfully for years


loulou
6 years ago

chooeykooh, I meant to add, Ive been taking it for two years ish now
I hope your eyesight problems improve soon, is it always just one eye? does it do blurry or totally disappear?


roni
6 years ago

thanks Loulou, I know i was amazed @ my Neuro not knowing, maybe it was his way of shutting me up! ha. will defo investigate further though, thanks again x


chueykooh
6 years ago

Hi loulou, just blurry. My opthamologist says I have ON but didn’t specify if it was in both eyes, but I think it switches because no matter which eye I cover, the other eye is still blurry. I have only been on LDN for a couple weeks now, it took me several attempts to get it prescribed, had to go to several doctors until I finally found one that actually gives a crap and he is now my permanent doctor, though he is just a GP. I’m breaking up with my neuro because he does nothing good for me. The LDN is helping tremendously with my bladder urgency problems, no more waking up in the middle of the night or running to the bathroom like a mad man. I am very curious to see how the LDN is working a year from now.


loulou
6 years ago

Hi there, is that it, is there only a couple of us on Shift with PPMS??? any more of you out there?
please say HELLO!


Anonymous
6 years ago

Hi loulou, I just joined Shift and I have PPMS. so… HELLO! 🙂 Would love to chat, share notes, commiserate etc. Contact me anytime!

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