Thanks Tree65 & Min… oh wait, I can’t see my reply to Pat, hopefully that will pop up later.
It’s good to join you and the support of this forum really is one of the few plus points of an otherwise rubbish situation!
Sonia x
Hi! Wow, you guys certainly know how to make a lady feel old! I was diagnosed in January this year with MS, initially supposed to be RR. But after 12 months + of no remission, and with my walking going more and more to pot, the neuro has conceded it does look more like PP. Im 63, and until this lot hit me, was very active, walked everywhere, and did 12+ mile walks with my dog and husband, without blinking. I feel more like 83 now; use 2 sticks or a trolley to walk anywhere, have installed a stair lift and acquired a mobility scooter from a friend. My husband has taken over the garden and the dog-walking, although I can do some ladylike weeding and pruning for short periods. I suppose I should accept my situation better than a young person can, but Im still annoyed with my body, which has become thoroughly disobedient! Thanks to all who`ve managed to read to the end of this rant - I feel a bit better now!! Faith WB
Hi Faith,
I think that’s how I guessed because it was almost a year ago I started to have real trouble walking, although it came and went so I ignored it!
I guess whatever age you are, it robs you of what you still expect/anticipate you’ll still be able to do. I guess we all feel robbed on that score, especially when we find out primary progressive, I doubt anyone wouldn’t have a bit of desperation when they hear that bit of news. They say you’re only as old as you feel and that one’s certainly true 
63 is not old anyway!
Glad you feel a bit better, I did have a good old emotional wobble but I feel a bit calmer now. Something Pat (Snow Leopard) said made me think, RRMS would scare me more in some ways, waking up one morning and have a new hideous symptom, or making plans then relapsing. I’m just hoping the progression isn’t too aggressive crosses fingers and toses
ps. I use just one stick at the moment, I only got it a week ago! Scary when 3 months ago I was teaching pole fitness class every week.
Sonia x
Hi All
I suppose I’m lucky in a way as I had surgery for a spinal cord injury and was told afterwards that the damage is permanent so I’d already grieved about the changes in mobility (I need a stick or crutches depending on the day or distance to travel) and I’d accepted the changes I’ve already got - balance, bladder etc. I was gutted explaining it to my parents and daughter as I’d stupidly told them the benefits of a cord injury over ms when the doctor told me he thought that was my only problem.
Hence the positive LP and the fact that I didn’t just have one brain lesion was a shocker. I don’t know who was more gobsmacked, me or my dad when all that was explained. Now’s the realization that my entire life has changed. The family appear to be handling it well but sometimes it feels that my “happy face” might crack.
Thanks to everyone who survived that post with wrists intact and I hope I have exhausted my rant mode. Take care.
Cath x
Ah Cath… sending you big ((((((((((((((((((((((((hugs)))))))))))))))))))))))))) darling.
We all need damned medals for bravery.
Let that happy face crack sometimes hon… your family are there for you & they’ll understand.
Pat x
Welcome to the gang Faith…
Yes this damned desease does make us feel ancient eh? I’m 60 in a few weeks… been dx since 08. Also use a mobility scooter.
Moved into sheltered housing few years ago as couldn’t manage where I was living. I’m the youngest here which is quite nice really… they call me the baby… LOL. Oldest here is 98… 38 years older than me!
Nice to meet you… come on here and ask us anything… absolutely anything! Best of all is we are all here for each other.
See you on here soon,
Pat x
Thanks Pat
You are a lovely person, so supportive and positive, this forum and its members are so lucky to have you. Thank you so much for your support since my diagnosis.
Cath xx
Cath,
I’ve just had a good cry trying to compose a response so apologies if this is a bit jumpy.
my sister was so angry when I told her, she sounded like she’d chin the neuro given half the chance! “What do you mean he’s not giving you anything?” I think it’s one of the hardest things telling the people who love you.
The happy face is a tough one to keep on, everyone keeps telling me how brave I am and it makes me feel like screaming as I’m so f***ing scared, you just can’t share that can you?! Anyway your story is a double shocker, and I’ll stop there cos the tears won’t push off right now 
We are here though and we can support each other emotionally
Sonia x hugs
Oh Sonia you are lovely. I was at a bit of a low point, sorry but I appreciate your concern. I suppose I’m ranting here because I’m trying to keep the upset away from my family and friends, trying not to cause them any more upset. I have the same silent screams.
I feel much more in control now as I’ve nearly got through all the paperwork this dx comes with, I can almost see the kitchen table, hopefully everyone who needs to know has been informed, my appointments and referrals are in the system and my “to do” list is shrinking.
Thanks again and take care.
Cath x
Cath, Have you checked your mortgage ( if you have one ) to see if you have any form of critical illness cover? You could possibly get your mortgage paid off. Sorry if I’m telling you something you already know. I found out years after my dx that I could have had ours paid off but I was too late …it bugs me even now! Well done for getting lots of the paperwork done. Don’t be too hard on yourself, putting on a brave face is exhausting and can sometimes be counter productive, I know from my own experience. Some of them will want to help and they may be hurt if you don’t give them the opportunity. Take care of yourself Cath, Nina x
Hi Nina
I do have critical illness cover but I’ve been off work for 2 1/2 years now. They paid monthly for 2 years but then I was diagnosed with spinal cord injury which isn’t on list. Although I’m significantly disabled they’ve been messing me around. I’ve even had to get financial ombudsmen involved. I contacted them to tell them about new dx but they were just so rude saying they wouldn’t contact Neuro again etc. I got proof from him and have sent it off but it’s a nightmare.
I suppose the sound advice for all of us is just to keep at it but on top of everything else it’s really frustrating and stressful. Why could you not go through with your claim if you don’t mind me asking? I understand if you don’t want to answer as it’s personal but you obviously had insurance.
Take care
Cath x
Hi Cath, I really don’t mind you asking at all. We lived in Spain at the time of my dx and our mortgage was Spanish, we hadn’t specified critical ilness cover. It was not mentioned to me by the medical people in Spain , as I believe it is here. It wasn’t until a few years later when we were back in the UK…someone I used to know said to me " aren’t you lucky…I know someone with MS and they got their mortgage paid off"( I bit my lip…with enormous difficulty !!) When we looked into it we found we could have claimed as critical illness cover was done automatically at that time in Spain. But of course by that time we had sold our house there and it was too late…as I said it still bugs me to this day but as it was really our own fault for not looking into it at the time…can’t believe I was so stupid…but there you go. My husband, who I have to say,is really the sort of person who would normally be very efficient in that circumstance was utterly knocked sideways by my dx…I was expecting it but hadn’t talked about it for fear of sounding like a drama queen…so I think really it was just the last thing on his mind. I’m sorry you’re having such a hassle…the last thing you need right now I’m sure…but I really hope you get them to pay up. Take care Cath Nina x
Hi Cath, I really don’t mind you asking at all. We lived in Spain at the time of my dx and our mortgage was Spanish, we hadn’t specified critical ilness cover. It was not mentioned to me by the medical people in Spain , as I believe it is here. It wasn’t until a few years later when we were back in the UK…someone I used to know said to me " aren’t you lucky…I know someone with MS and they got their mortgage paid off"( I bit my lip…with enormous difficulty !!) When we looked into it we found we could have claimed as critical illness cover was done automatically at that time in Spain. But of course by that time we had sold our house there and it was too late…as I said it still bugs me to this day but as it was really our own fault for not looking into it at the time…can’t believe I was so stupid…but there you go. My husband, who I have to say,is really the sort of person who would normally be very efficient in that circumstance was utterly knocked sideways by my dx…I was expecting it but hadn’t talked about it for fear of sounding like a drama queen…so I think really it was just the last thing on his mind. I’m sorry you’re having such a hassle…the last thing you need right now I’m sure…but I really hope you get them to pay up. Take care Cath Nina x
Hi Cath, I really don’t mind you asking at all. We lived in Spain at the time of my dx and our mortgage was Spanish, we hadn’t specified critical ilness cover. It was not mentioned to me by the medical people in Spain , as I believe it is here. It wasn’t until a few years later when we were back in the UK…someone I used to know said to me " aren’t you lucky…I know someone with MS and they got their mortgage paid off"( I bit my lip…with enormous difficulty !!) When we looked into it we found we could have claimed as critical illness cover was done automatically at that time in Spain. But of course by that time we had sold our house there and it was too late…as I said it still bugs me to this day but it was really our own fault for not looking into it at the time…can’t believe I was so stupid…but there you go. My husband, who I have to say,is really the sort of person who would normally be very efficient in that circumstance was utterly knocked sideways by my dx…I was expecting it but hadn’t talked about it for fear of sounding like a drama queen…so I think really it was just the last thing on his mind. I’m sorry you’re having such a hassle…the last thing you need right now I’m sure…but I really hope you get them to pay up. Take care Cath Nina x
Hi Cath, I really don’t mind you asking at all. We lived in Spain at the time of my dx and our mortgage was Spanish, we hadn’t specified critical ilness cover. It was not mentioned to me by the medical people in Spain , as I believe it is here. It wasn’t until a few years later when we were back in the UK…someone I used to know said to me " aren’t you lucky…I know someone with MS and they got their mortgage paid off"( I bit my lip…with enormous difficulty !!) When we looked into it we found we could have claimed as critical illness cover was done automatically at that time in Spain. But of course by that time we had sold our house there and it was too late…as I said it still bugs me to this day but it was really our own fault for not looking into it at the time…can’t believe I was so stupid…but there you go. My husband, who I have to say,is really the sort of person who would normally be very efficient in that circumstance was utterly knocked sideways by my dx…I was expecting it but hadn’t talked about it for fear of sounding like a drama queen…so I think really it was just the last thing on his mind. I’m sorry you’re having such a hassle…the last thing you need right now I’m sure…but I really hope you get them to pay up. Take care Cath Nina x
Hi Cath, I really don’t mind you asking at all. We lived in Spain at the time of my dx and our mortgage was Spanish, we hadn’t specified critical ilness cover. It was not mentioned to me by the medical people in Spain , as I believe it is here. It wasn’t until a few years later when we were back in the UK…someone I used to know said to me " aren’t you lucky…I know someone with MS and they got their mortgage paid off"( I bit my lip…with enormous difficulty !!) When we looked into it we found we could have claimed as critical illness cover was done automatically at that time in Spain. But of course by that time we had sold our house there and it was too late…as I said it still bugs me to this day but it was really our own fault for not looking into it at the time…can’t believe I was so stupid…but there you go. My husband, who I have to say,is really the sort of person who would normally be very efficient in that circumstance was utterly knocked sideways by my dx…I was expecting it but hadn’t talked about it for fear of sounding like a drama queen…so I think really it was just the last thing on his mind. I’m sorry you’re having such a hassle…the last thing you need right now I’m sure…but I really hope you get them to pay up. Take care Cath Nina x
Hi Cath, I really don’t mind you asking at all. We lived in Spain at the time of my dx and our mortgage was Spanish, we hadn’t specified critical ilness cover. It was not mentioned to me by the medical people in Spain , as I believe it is here. It wasn’t until a few years later when we were back in the UK…someone I used to know said to me " aren’t you lucky…I know someone with MS and they got their mortgage paid off"( I bit my lip…with enormous difficulty !!) When we looked into it we found we could have claimed as critical illness cover was done automatically at that time in Spain. But of course by that time we had sold our house there and it was too late…as I said it still bugs me to this day but it was really our own fault for not looking into it at the time…can’t believe I was so stupid…but there you go. My husband, who I have to say,is really the sort of person who would normally be very efficient in that circumstance was utterly knocked sideways by my dx…I was expecting it but hadn’t talked about it for fear of sounding like a drama queen…so I think really it was just the last thing on his mind. I’m sorry you’re having such a hassle…the last thing you need right now I’m sure…but I really hope you get them to pay up. Take care Cath Nina x
Hi Cath, I really don’t mind you asking at all. We lived in Spain at the time of my dx and our mortgage was Spanish, we hadn’t specified critical ilness cover. It was not mentioned to me by the medical people in Spain , as I believe it is here. It wasn’t until a few years later when we were back in the UK…someone I used to know said to me " aren’t you lucky…I know someone with MS and they got their mortgage paid off"( I bit my lip…with enormous difficulty !!) When we looked into it we found we could have claimed as critical illness cover was done automatically at that time in Spain. But of course by that time we had sold our house there and it was too late…as I said it still bugs me to this day but it was really our own fault for not looking into it at the time…can’t believe I was so stupid…but there you go. My husband, who I have to say,is really the sort of person who would normally be very efficient in that circumstance was utterly knocked sideways by my dx…I was expecting it but hadn’t talked about it for fear of sounding like a drama queen…so I think really it was just the last thing on his mind. I’m sorry you’re having such a hassle…the last thing you need right now I’m sure…but I really hope you get them to pay up. Take care Cath Nina x
Hi Cath, I really don’t mind you asking at all. We lived in Spain at the time of my dx and our mortgage was Spanish, we hadn’t specified critical ilness cover. It was not mentioned to me by the medical people in Spain , as I believe it is here. It wasn’t until a few years later when we were back in the UK…someone I used to know said to me " aren’t you lucky…I know someone with MS and they got their mortgage paid off"( I bit my lip…with enormous difficulty !!) When we looked into it we found we could have claimed as critical illness cover was done automatically at that time in Spain. But of course by that time we had sold our house there and it was too late…as I said it still bugs me to this day but it was really our own fault for not looking into it at the time…can’t believe I was so stupid…but there you go. My husband, who I have to say,is really the sort of person who would normally be very efficient in that circumstance was utterly knocked sideways by my dx…I was expecting it but hadn’t talked about it for fear of sounding like a drama queen…so I think really it was just the last thing on his mind. I’m sorry you’re having such a hassle…the last thing you need right now I’m sure…but I really hope you get them to pay up. Take care Cath Nina x
Oh Dear…sorry …hope this one doesn’t appear a million times too ! Nina