Hello, Having recently read Maryla’s post introducing herself I thought I should follow her lead, I have commented on a few other posts but I thought I should say Hello properly. A year ago following a MRI I was told by the neurologist that the clinical diagnosis was MS, I had only visited mt GP about 2 months previous as I thought I had done something to my hip. I was completely shocked to be given the diagnosis as I really hadn’t considered there was anything seriously wrong. I have since been told that it is almost certainly PPMS. I am not currently living in the UK and was not able to get any information in English until I found this site and it has been very useful. My neurologist speaks good English but she does not always understand the symptoms I describe to her, I saw her recently and told her one of my symptoms was MS hug but she didn’t understand what that was, I think it got lost in translation. She is very nice and I am sure it is daunting for her to deal with a second language. I have three grown up children living in the uk and I hope to return there in the next few years, although I am not sure where. I am not currently on any medication and still working full time. Jackie
Hi Jackie
Welcome to our gang, lovely people here who offer good advice, or listen, whatever is needed.
Look forward to speaking soon.
Pam. X
Thank you Pam
Hi Jackie
Welcome to the site, I am not PPMS but do suffer with the dreaded hug.
I just thought I’d mention that I’ve come across a British Neurologist and MS nurse who also didn’t understand ‘the hug’ either. I thought rather naively that everyone knew about it but have many friends with MS who do not know the joys of the hug.
I have found the drugs Baclofen and Amitriptyline help , recently I’ve been using a tens machine which also seems to help with muscle spasms. I also wear a bra that’s too big for me, (comfort is everything). I have some information that was given to me a while ago, will copy and paste it to you.
Here goes
Much worse in heat
· Much worse when fatigued or stressed
· Don’t wear a bra (it irritates the muscles)
· Don’t wear tight clothing… the looser the better
· Avoid large meals… little and often is better
· Lie down in/on bed if you can… and lying completely flat often helps
· Take 2 Paracetamol… if you are not on other pain med’s
· Try controlling your breathing… deep in through the nose and slowly blow out of mouth… and try and relax whole body while doing it
· Stay as cool as you can but don’t have cold shower… luke warm is better
· Rest, rest, rest and then get some more rest (if at all possible)
· Gently rub the affected area. It might feel like it’s bruised… don’t worry, that’s normal.
I hope this is helpful to you.
Wendy x
Hi Wendy, Thanks for the advice. So far my symptoms are not too bad but I do notice what I think is the hug most days and I suspect the heat is not helping. Jackie
Hi Jackie, welcome to our little gang! I’m very glad that we have already been some help to you. It’s very isolating living with this and not knowing anyone else who has it… so this board is a lifeline. Wendy has given you good advice for dealing with the dreaded HUG!!! I hope you will come on here and know that you are with a group of friends who know exactly what it’s like… living day by day with ppms is not easy but it helps to know that we are out here in cyberspace! See you on here soon, Pat xx
Hi Jackie and welcome to the forum, it’s been a godsend to me in the year since my dx. Everyone’s lovely and there’s always someone with advice. Hope you return regularly.
Cath xx
Hi Jackie and welcome! I am a relative newbie here myself, but can assure you you’ve come to the right place for knowledge, comfort and support. Whereabouts are you? You don’t say, unless I’ve missed it.
I have also recently been diagnosed with PPMS. I have read a lot of your posts and have found it most re-assuring - it’s always nice to know that people are going through the same things as you.
Hello Jackie, Welcome to our little group. Its so hard to learn to live with this rotten disease but for me finding this forum and knowing that I had made some friends who truly understand what life is like for us was a lifeline. Hope that will be the case for you too. If you have been reading the forum you will already know that there are no taboo subjects, between us all we seem to have a vast amount of MS related knowledge, but more importantly we are always here to support each other. Hope to see you back as one of our regulars. Best wishes, Nina x
Jackie, do you mind me asking which country you are living in at the moment? Nina x
[quote=“Layla”]
I have also recently been diagnosed with PPMS. I have read a lot of your posts and have found it most re-assuring - it’s always nice to know that people are going through the same things as you.
[/quote] Hi Layla and welcome to the gang!!! You have certainly found the right place… we are a very supportive bunch on here and always happy to welcome a new member. Would be nice to know a bit more about you. To start a new thread, go back to the main board where you can see all of the titles of posts and click on the NEW THREAD button. Put in a title and then tell us a bit more about yourself. NO pressure if you don’t want to do this… completely up to you. Hope you come on here & get to know us all… it’s a great place for advice and friendship. Pat xx
Hi everyone, Thank you all for your welcome, sorry I didn’t reply earlier I have been at work. Kevadams and Nina you asked about my location, I currently liv in the Netherlands, they have a pretty good medical system and a decent football team. I am getting my earplugs ready for tomorrow, if they win it will be very noisy. Jackie
Goodness, no wonder you have problems with the language Jackie! I had remembered somebody saying they lived in Spain but I couldn’t recall who it was ( serious case of cog fog!) I used to live in Spain and was simply wondering if I could be of help with the language but sorry Spanish is my limit! Never worry about how long it takes you to reply, someone or other amongst us often disappear for a few days or so when we are feeling at our worst…or even at our best and making hay whilst the sun shines! As for the football…oh my goodness I shall be SO SO relieved when its done and dusted!! ( sorry Pam, Kev, Don and anyone else who loves it) Nina x
Hi Nina, Dutch is not the easiest language although I think dealing with any medical issues are always difficult when not in your own language, on the plus side I generally don’t have to wait long before I get appointments. I will also be glad to see the end of the football, I don’t mind the occasional match but there has just been so much! Jackie xx
Jackie I speak Afrikaans which is derived from Dutch and the words are very similar if you need help with a couple of symptoms I could try to translate. I’ve translated for a few Dutch people in the UK who became ill and had poor grasp of English. It’s not as good as it was, I was once fluent but I can try if you’re struggling.
Cath xx
Thanks Cath.
I really, really hope the Dutch win tomorrow!!
The tension is building and orange is taking over!
Hi Jackie,
Welcome to the forum
You have definitely came to the correct place we are a friendly bunch and supportive of any new member.
Speak soon.
Robert.