Monday, 11 February 2019
Monday, 28 January 2019
My favourite .......MS Awareness video.
Every time i hear or see this video it brings tears to my eyes. Last week i was watching the morning show and during the ads this awareness of MS video came on from the Dutch National Fonds. Well i was a complete mess after this, and just crying my eyes out. Its just so "how it is" and everything about this video is real. Yep i am a U2 fan !!!!!!!
A year ago i bought my new car and this was at the time i was not sure wether to drive again due to my eyes. I had done a eye test and my vision was fine. I've had optic neurotic in one of my eyes, which left me with around 67 percent vision left.
My number plate of my car is U2.....with the number. Maybe not much importance to anyone but to me this was a big deal.
I hope you love this song as much as me :)
Thank you U2 :) we love your support.
Mascha :)
Monday, 31 December 2018
Festive seasons and MS
Christmas has come and now time for New years Eve. I had a great Christmas and i hope you all did as well? They are busy times and although challenging for everyone, they are even more so for people suffering from an illness .
TRYING TO KEEP UP
You try to get your loved ones the presents they want and at the same time you know you need to slow down. This is all easier said then actually listening to your own well advise. You know you want to get that one more present and oh what the" i will be fine. Then come home absolutely exhausted knowing you over done things. In the mean time my vision started playing up and i even manage to visit my doctor and get an appointment to get my eyes tested. All good news, no problems with my optic nerve. I guess my nurse was right when she told me i was over tired.
I obviously pushed my limits and got the cold on top. This didn't stop me though!!!! I still had to get that present until my husband told me "you are not going anywhere".
My point is that we know our limits with MS but sometimes we are on a roll and just want to ignore the fact that we are in fact sick. We don't always want to give up and even think of our symptoms sometimes, but when we do this our body just keeps getting worse for most of us. Trying to ignore we have MS is almost impossible for most of us. We are faced with daily symptoms everyday for most of us. Trying to ignore MS is like saying you are not sick and just keep going. Go on, Go on!!!! Run while you are at it!!! You are not sick today,even though you have pain in your leg, pain in your eye, feeling the fatigue and the heavy feeling of your body weighing you down is nothing, Go on!!!
No,No,No it's impossible to ignore that you have MS!! Mind you i have tried to ignore my MS and even unfollowed some MS sites just so i could pretend it didn't exist. Did it work? Of course not!!!!
To be honest it made me feel worse trying to ignore it. Like i am lying to myself saying i am not sick. Its's stupid.
MOMENTS
You may have had people say to you "Oh just ignore it, then it will go away" Or " You talk too much about it" yes we have all heard these statements and they don't make us feel any better. By saying "just don't think about it is crazy. If you had a leg that was with burning pain, could you ignore this? No you wouldn't .
Now talking about it too much i can understand that not everyone wants to hear about it all the time. I have my MS sites and MS and ME radio is one of the sites i love. Great people and great information .
Now it's time to start the New year again with hope and strength :) :)
I wish everyone a happy New Year!!!!!!
Best
Mas x
TRYING TO KEEP UP
You try to get your loved ones the presents they want and at the same time you know you need to slow down. This is all easier said then actually listening to your own well advise. You know you want to get that one more present and oh what the" i will be fine. Then come home absolutely exhausted knowing you over done things. In the mean time my vision started playing up and i even manage to visit my doctor and get an appointment to get my eyes tested. All good news, no problems with my optic nerve. I guess my nurse was right when she told me i was over tired.
I obviously pushed my limits and got the cold on top. This didn't stop me though!!!! I still had to get that present until my husband told me "you are not going anywhere".
My point is that we know our limits with MS but sometimes we are on a roll and just want to ignore the fact that we are in fact sick. We don't always want to give up and even think of our symptoms sometimes, but when we do this our body just keeps getting worse for most of us. Trying to ignore we have MS is almost impossible for most of us. We are faced with daily symptoms everyday for most of us. Trying to ignore MS is like saying you are not sick and just keep going. Go on, Go on!!!! Run while you are at it!!! You are not sick today,even though you have pain in your leg, pain in your eye, feeling the fatigue and the heavy feeling of your body weighing you down is nothing, Go on!!!
No,No,No it's impossible to ignore that you have MS!! Mind you i have tried to ignore my MS and even unfollowed some MS sites just so i could pretend it didn't exist. Did it work? Of course not!!!!
To be honest it made me feel worse trying to ignore it. Like i am lying to myself saying i am not sick. Its's stupid.
MOMENTS
You may have had people say to you "Oh just ignore it, then it will go away" Or " You talk too much about it" yes we have all heard these statements and they don't make us feel any better. By saying "just don't think about it is crazy. If you had a leg that was with burning pain, could you ignore this? No you wouldn't .
Now talking about it too much i can understand that not everyone wants to hear about it all the time. I have my MS sites and MS and ME radio is one of the sites i love. Great people and great information .
Now it's time to start the New year again with hope and strength :) :)
I wish everyone a happy New Year!!!!!!
Best
Mas x
Sunday, 23 December 2018
Friday, 9 November 2018
My Fuzzy Cloudy Brain.
Now someone with MS may understand the title straight away without putting much thought to it. In the MS world we often use the terms for cognitive issues,brain fog,cog fog a more common one and cloudy head. I am sure there are more terms but i can't remember,as my heading states "my fuzzy,cloudy brain.
For those that are in the unknown of this title,let me explain in a simple way. I will not go into the science part but more my everyday life struggles with my brain.
As this is one of the most common symptom of people suffering from MS,it's also one of the frustrating ones. Now i cannot speak for everyone,but when talking to my MS chat groups or reading articles it seems this symptom is one that pops up a lot and also seems the most challenging.
Now i can explain my experiences but not everyone will experience it the same way,although many may identify very well. For me the heat and fatigue are triggers to my fuzzy brain. Also an overload of information or noise all at the same time can trigger these issues.
Basically my brain gets tired and my electrical signals in my brain do not travel very well from point A to B. Sometimes they get lost on their way or are very slowed down. The coating of our neurons are damaged due to MS and this causes our signals in our brain to backfire. This also causes slow thinking,memory issues and receiving information becomes more difficult. Now i am not a scientist and my explanation is very very basic,but you get the idea on a basic level that is.
I suffer from this on a regular basis and some days more then others. I will be in a conversation with a group and i just can't keep up sometimes because the conversation is going too fast for me. This can also happen when i watch a TV show and especially talk shows,that i just cannot keep up.
For me the worst thing about this is when they get mad, or do not understand that i am struggling trying to hold the conversation and my brain is too tired for me to hold it all together and i forget or i forget some parts of it. I would hear the" you are not listening" or i just told you" kind of attitude .
This can be very frustrating and embarrassing too. Some days when it's bad i try not to say much at all.
Not many people understand because again this is an invisible symptom of MS. Even the ones that do understand,say they understand but their actions speak differently.
Being in big crowds cause a lot of cog fog and trying to hold up a conversation is often challenging. I think the reason for me is because i get tired of noise overload,especially in smaller spaces or at events with loud music. I just get so full in my head that there is no more space for any extra information. My days of social events have become a worry instead of joy.
I just wish that on the outside world people would not judge so much. We believe that because someone is young and looks healthy that they cannot have memory issues or confusion. Oh did i not mention,confusion is also a part of this cog fog,brain fuzz we have. yes we can also get confused when our brains are not on sharp form.
It's not only the older ones that can struggle with these issues but also the ones that have MS and other illnesses out there.
If only there was more empathy in the world.
To my MS readers i would love to hear your story or tips of how you manage this.
Please follow me :)
Best,
Mas x
For those that are in the unknown of this title,let me explain in a simple way. I will not go into the science part but more my everyday life struggles with my brain.
As this is one of the most common symptom of people suffering from MS,it's also one of the frustrating ones. Now i cannot speak for everyone,but when talking to my MS chat groups or reading articles it seems this symptom is one that pops up a lot and also seems the most challenging.
Now i can explain my experiences but not everyone will experience it the same way,although many may identify very well. For me the heat and fatigue are triggers to my fuzzy brain. Also an overload of information or noise all at the same time can trigger these issues.
Basically my brain gets tired and my electrical signals in my brain do not travel very well from point A to B. Sometimes they get lost on their way or are very slowed down. The coating of our neurons are damaged due to MS and this causes our signals in our brain to backfire. This also causes slow thinking,memory issues and receiving information becomes more difficult. Now i am not a scientist and my explanation is very very basic,but you get the idea on a basic level that is.
I suffer from this on a regular basis and some days more then others. I will be in a conversation with a group and i just can't keep up sometimes because the conversation is going too fast for me. This can also happen when i watch a TV show and especially talk shows,that i just cannot keep up.
For me the worst thing about this is when they get mad, or do not understand that i am struggling trying to hold the conversation and my brain is too tired for me to hold it all together and i forget or i forget some parts of it. I would hear the" you are not listening" or i just told you" kind of attitude .
This can be very frustrating and embarrassing too. Some days when it's bad i try not to say much at all.
Not many people understand because again this is an invisible symptom of MS. Even the ones that do understand,say they understand but their actions speak differently.
Being in big crowds cause a lot of cog fog and trying to hold up a conversation is often challenging. I think the reason for me is because i get tired of noise overload,especially in smaller spaces or at events with loud music. I just get so full in my head that there is no more space for any extra information. My days of social events have become a worry instead of joy.
I just wish that on the outside world people would not judge so much. We believe that because someone is young and looks healthy that they cannot have memory issues or confusion. Oh did i not mention,confusion is also a part of this cog fog,brain fuzz we have. yes we can also get confused when our brains are not on sharp form.
It's not only the older ones that can struggle with these issues but also the ones that have MS and other illnesses out there.
If only there was more empathy in the world.
To my MS readers i would love to hear your story or tips of how you manage this.
Please follow me :)
Best,
Mas x
Thursday, 1 November 2018
My crazy travels
So here i am sitting behind my laptop and a nice view onto the beach in Australia. I am currently back here to help my son with his move to the UK. As this is now our fourth trip this year to Australia,i am now looking forward to less travel.
You see having MS brings it's challenges when confronted with disrupted routine. I have my routine here but very different to where i live full time in Monaco. Even though i have lived here before i don't like being out of my comfort zone. I partly blame my MS for this.
Now i have had my challenges of trying a new medication,and as yet it has failed me again. i got all the side effects and it made me feel confused,ill and to the point i lost my memory .
My point is that feeling so bad and being away from your home is not a good mix. When you feel so bad you want to be in your comfort place and have your dog lie with his head on your bad leg. Have your doctor close by and all the other comforts it brings to calling it your home. Now many may disagree and say i am lucky to be able to travel,and this is true to a degree. But when you have MS or any other medical condition,travelling becomes challenging.
At this point i am looking out to a stunning view and birds chirping in the background. Now this may have been fantastic a few years ago but now i am feeling isolated and as a result have anxiety and to throw into the mix,the MS hug. I'm not saying this cannot happen at home because it can,but not being home you feel the extend of your symptoms much more. Maybe not every person with MS has this but i know there are some that don't even try to travel or they have no choice as their disability has set in too far. So for my last reason i try to make the most of it and enjoy it. Not always easy when the symptoms come out and try to take over. My worst one is anxiety when i am here. Now i know heat causes my anxiety,and as Australia is hot most of the time this could be the source.
At the same time it has been cold the last few days,which is not normal this time of year.
I hope many of you don't have these issues while travelling. It takes the fun out of it for sure.
Best
Mas x
You see having MS brings it's challenges when confronted with disrupted routine. I have my routine here but very different to where i live full time in Monaco. Even though i have lived here before i don't like being out of my comfort zone. I partly blame my MS for this.
Now i have had my challenges of trying a new medication,and as yet it has failed me again. i got all the side effects and it made me feel confused,ill and to the point i lost my memory .
My point is that feeling so bad and being away from your home is not a good mix. When you feel so bad you want to be in your comfort place and have your dog lie with his head on your bad leg. Have your doctor close by and all the other comforts it brings to calling it your home. Now many may disagree and say i am lucky to be able to travel,and this is true to a degree. But when you have MS or any other medical condition,travelling becomes challenging.
At this point i am looking out to a stunning view and birds chirping in the background. Now this may have been fantastic a few years ago but now i am feeling isolated and as a result have anxiety and to throw into the mix,the MS hug. I'm not saying this cannot happen at home because it can,but not being home you feel the extend of your symptoms much more. Maybe not every person with MS has this but i know there are some that don't even try to travel or they have no choice as their disability has set in too far. So for my last reason i try to make the most of it and enjoy it. Not always easy when the symptoms come out and try to take over. My worst one is anxiety when i am here. Now i know heat causes my anxiety,and as Australia is hot most of the time this could be the source.
At the same time it has been cold the last few days,which is not normal this time of year.
I hope many of you don't have these issues while travelling. It takes the fun out of it for sure.
Best
Mas x
Monday, 17 September 2018
The unknown challenge of MS
The ones that do have multiple sclerosis can be a challenging disease. Our friends and family it can be the same,challenging. For the ones we don't know it can be an unknown disease. More and more often i get confronted with people that have no idea what MS actually is. Some never heard of it,and some don't really understand it. Sure there are people that know what it is ,but in generally i meet people that have no idea.
I travel a fair bit between Europe and Australia and it's surprising to see that its a pretty unknown thing. I must say Australia and Amsterdam are quite informed with MS. But in contrary to the French,not so.
Considering we live in 2018 you would think that MS would pop up a lot more then expected. Parkinson on the other hand most people know. Could this be due to Michael J Fox who has Parkinson? I am not saying this disease is not bad but merely just saying this because its not so well known as MS. It could be coincidence that the people i meet have no idea and someone else with MS may meet people all the time that knows our disease. Who knows?
Then you have the people that don't believe you. Why is this? Would we really pretend to have MS? Why would we want to do this? Do we really make up all of pur symptoms and struggles as a lie?
Isn't it more about the people questioning us,because they are not capable of understanding such a complex disease and therefore judge us and disbelief? Not having the intelligence to understand or just plain simple "being mean". I have no idea what reasons these people have to disbelief.
I myself have had family members telling me that i have no MS,and that i use it for my own interests. This really hurts but at the same time it just confirms the stupidity and how a person can be so darn mean. The fact that we use this against us,is just plain stupid. There is no advantage of having MS,in fact nothing at all. No amount of money would i want to have MS. But i have no choice,the fact of the matter is i have MS and the MRI's prove it,let alone my MS neurologist and specialist confirming this.
So to all of those that are unknown to this disease,please look it up and before you tell someone who has MS that they are faking it,please think again. You are hurting the ones that have this horrible ,challenging disease. Why? Maybe because you don't understand and its unknown to you but it does not give you a reason to say or act in this way.
To all my MS readers i hope this does not happen to you,as we deserve better.
Please follow me :)
Best
Mas x
I travel a fair bit between Europe and Australia and it's surprising to see that its a pretty unknown thing. I must say Australia and Amsterdam are quite informed with MS. But in contrary to the French,not so.
Considering we live in 2018 you would think that MS would pop up a lot more then expected. Parkinson on the other hand most people know. Could this be due to Michael J Fox who has Parkinson? I am not saying this disease is not bad but merely just saying this because its not so well known as MS. It could be coincidence that the people i meet have no idea and someone else with MS may meet people all the time that knows our disease. Who knows?
Then you have the people that don't believe you. Why is this? Would we really pretend to have MS? Why would we want to do this? Do we really make up all of pur symptoms and struggles as a lie?
Isn't it more about the people questioning us,because they are not capable of understanding such a complex disease and therefore judge us and disbelief? Not having the intelligence to understand or just plain simple "being mean". I have no idea what reasons these people have to disbelief.
I myself have had family members telling me that i have no MS,and that i use it for my own interests. This really hurts but at the same time it just confirms the stupidity and how a person can be so darn mean. The fact that we use this against us,is just plain stupid. There is no advantage of having MS,in fact nothing at all. No amount of money would i want to have MS. But i have no choice,the fact of the matter is i have MS and the MRI's prove it,let alone my MS neurologist and specialist confirming this.
So to all of those that are unknown to this disease,please look it up and before you tell someone who has MS that they are faking it,please think again. You are hurting the ones that have this horrible ,challenging disease. Why? Maybe because you don't understand and its unknown to you but it does not give you a reason to say or act in this way.
To all my MS readers i hope this does not happen to you,as we deserve better.
Please follow me :)
Best
Mas x
Thursday, 6 September 2018
Frustration and Tears
To my MS readers, i am sure my heading sounds somewhat familiar. Although i hate to admit this,but i do have moments of "Anger,Frustration,Sadness or all at the same time. It doesn't take much to have an outburst of frustration and a flowing of tears after. I suppose this is all part of our MS journey. it's quite common to have these emotions. in fact sometimes it's good to have these,it shows we still have the fighting spirit in us.
I have had MS for quite a number of years and my experience is that it does not get any easier, for me that is. What does make it easy is the information i can get on the internet and knowing i actually have MS.
A few weeks ago we went off with our boat sailing. Yes you would think "sailing" how can she do this"? Well to be honest i don't do a lot. My husband does all the hard work and i will press a button here and there to help out. It helps that this is a modern sailing boat and self furling boom,meaning all the hard work gets done by a push of a button. Okay we still need to do some work regarding ropes and navigation but basically i do not do much. I wish i could do a lot more but my body gets pretty fatigued due to the sun and trying to stay balanced. I love sailing and enjoy the silence and the freedom.
My frustrations sometimes come after our trip. I am so exhausted and my body is so fatigued that my MS symptoms set in full force. This does not happen all the time though,but a few weeks ago it was really hot and we had no wind. This sets off my fatigue and my legs become so heavy and tired that i literally feel like i need to drag them. My husband asked me "can you walk to the shop to get me a drink,it's only 5 minutes he said"? If you can manage he added on. I looked at the shop and it seemed pretty close but the idea of having to walk while feeling so tired and in pain just seemed like a big task. I decided to walk to the shop and only 5 minutes into my walk i stopped and burst into tears!!! I came to realise that this walk was too much for me. Feelings of feeling useless and frustration that my MS determined when i could walk just got me so frustrated and sad at the same time. The thing that got me was that i had no choice. I wanted so much to walk to that damn shop but couldn't.
I walked back in the port,crying all the way. Wiped my tears away as soon as i arrived and got back on our boat pretending all was fine. I ended up cleaning the boat crying the whole time.
I guess it's okay to cry and get mad. MS is not easy and although we all march on,we fight everyday to lead a normal life. Some days are just harder and we get tired to fight. This is okay.
I am sure we all have had days like this and you know what "let it out". We cannot always be tuff and soldier on and sometimes we need a few tears to keep ourselves going.
To my MS warriors :)
I have had MS for quite a number of years and my experience is that it does not get any easier, for me that is. What does make it easy is the information i can get on the internet and knowing i actually have MS.
A few weeks ago we went off with our boat sailing. Yes you would think "sailing" how can she do this"? Well to be honest i don't do a lot. My husband does all the hard work and i will press a button here and there to help out. It helps that this is a modern sailing boat and self furling boom,meaning all the hard work gets done by a push of a button. Okay we still need to do some work regarding ropes and navigation but basically i do not do much. I wish i could do a lot more but my body gets pretty fatigued due to the sun and trying to stay balanced. I love sailing and enjoy the silence and the freedom.
My frustrations sometimes come after our trip. I am so exhausted and my body is so fatigued that my MS symptoms set in full force. This does not happen all the time though,but a few weeks ago it was really hot and we had no wind. This sets off my fatigue and my legs become so heavy and tired that i literally feel like i need to drag them. My husband asked me "can you walk to the shop to get me a drink,it's only 5 minutes he said"? If you can manage he added on. I looked at the shop and it seemed pretty close but the idea of having to walk while feeling so tired and in pain just seemed like a big task. I decided to walk to the shop and only 5 minutes into my walk i stopped and burst into tears!!! I came to realise that this walk was too much for me. Feelings of feeling useless and frustration that my MS determined when i could walk just got me so frustrated and sad at the same time. The thing that got me was that i had no choice. I wanted so much to walk to that damn shop but couldn't.
I walked back in the port,crying all the way. Wiped my tears away as soon as i arrived and got back on our boat pretending all was fine. I ended up cleaning the boat crying the whole time.
I guess it's okay to cry and get mad. MS is not easy and although we all march on,we fight everyday to lead a normal life. Some days are just harder and we get tired to fight. This is okay.
I am sure we all have had days like this and you know what "let it out". We cannot always be tuff and soldier on and sometimes we need a few tears to keep ourselves going.
To my MS warriors :)
Thursday, 28 June 2018
Can i see you ??
Not sure anyone that has MS feels the same way as i do sometimes. I do know that it is common to have certain emotions with MS. It effects us physically and emotionally.
I find myself in emotional situations all the time,and i tell you it sucks! Mind you it also sucks for the ones around me. I have always been somewhat insecure but i must say the longer i have MS,the more insecure i get at times.
it really depends on my day and how i feel. When faced with a bad day and i am in pain or any symptom MS gives me,it can make me terribly uncomfortable around others. While at home i have no issues,i can just go my own pace and rest when i need it. No one can see me so i am in my comfort zone.
Place me in a busy restaurant and i can totally feel out of my comfort zone. While I've had a bad day and feel very fatigued,things can get pretty bad with my emotions. I guess it's a feeling of being very overwhelmed and trying to act normal like everyone else,but really i want to hide in my shell.
Basically i feel bad,most likely have pain,some spasticity going on throughout my arm and leg and MS fatigue has hit me.
To be honest how can i feel comfortable? how can i feel secure about myself while feeling this way? Because i feel like this on the inside.........pretty bad..........i feel i look like this from the outside. this is totally false as MS is invisible and no one can see how bad i feel. in fact i probably look okay as I've done my hair,make up and put on a fancy dress and some days i even attempt high heels.
For someone on the outside they really cannot see that i have MS and having a bad day.
this is where my frustration comes in,because i cannot always hide how i feel. This causes a night out with my husband,not so fun. Most of the time he understands perfectly well but the nights where my emotional state is beyond fixing,the night is less fun. Which makes me think it's better next time to just say "hey tonight is not the night sorry".
I notice these episodes when I've over done things in the day. Doing too much and exceeding my limits. Basically not giving myself enough rest. My mind seems to get tired and the brain fog sets in,and my speech becomes a bit weird. By weird i mean not finding my words.
Does anyone have these issues? I would love to hear your stories and how you face these situations?
Best,
Mas x
I find myself in emotional situations all the time,and i tell you it sucks! Mind you it also sucks for the ones around me. I have always been somewhat insecure but i must say the longer i have MS,the more insecure i get at times.
it really depends on my day and how i feel. When faced with a bad day and i am in pain or any symptom MS gives me,it can make me terribly uncomfortable around others. While at home i have no issues,i can just go my own pace and rest when i need it. No one can see me so i am in my comfort zone.
Place me in a busy restaurant and i can totally feel out of my comfort zone. While I've had a bad day and feel very fatigued,things can get pretty bad with my emotions. I guess it's a feeling of being very overwhelmed and trying to act normal like everyone else,but really i want to hide in my shell.
Basically i feel bad,most likely have pain,some spasticity going on throughout my arm and leg and MS fatigue has hit me.
To be honest how can i feel comfortable? how can i feel secure about myself while feeling this way? Because i feel like this on the inside.........pretty bad..........i feel i look like this from the outside. this is totally false as MS is invisible and no one can see how bad i feel. in fact i probably look okay as I've done my hair,make up and put on a fancy dress and some days i even attempt high heels.
For someone on the outside they really cannot see that i have MS and having a bad day.
this is where my frustration comes in,because i cannot always hide how i feel. This causes a night out with my husband,not so fun. Most of the time he understands perfectly well but the nights where my emotional state is beyond fixing,the night is less fun. Which makes me think it's better next time to just say "hey tonight is not the night sorry".
I notice these episodes when I've over done things in the day. Doing too much and exceeding my limits. Basically not giving myself enough rest. My mind seems to get tired and the brain fog sets in,and my speech becomes a bit weird. By weird i mean not finding my words.
Does anyone have these issues? I would love to hear your stories and how you face these situations?
Best,
Mas x
Saturday, 2 June 2018
Finding that special one.
It has taken me a long time to finally write my blog. From my time in Australia and back to Europe,things have been quite busy.
while in Australia i got the nasty flu which left me feeling sick for a long time. What i realised travelling from both continents,that i don't have any MS back up or support at all. I have been trying to set up my MS support in both countries and both not succeeding .
In Australia they do have very good neurologists and specialised in MS. The problem is getting into the system or being put on a waiting list. By the time i get my information i need to leave countries again. I stay for two months and sometimes up to three months. You would have thought this gives you enough time but honestly the time just goes by. Being struck with the flu and then out of order for a month doesn't help either.
So i am back in Monaco,and there are no MS specialist or great neurologist that i have come across as yet. So again no back up here either.
My medical support is in Holland,in Amsterdam.My neurologist is an MS specialist at the VUMC in Amsterdam and they have a whole section just for MS. I must say their system is fantastic.
My neurologist is very good and knows what he is talking about and hence many years of experience. The most important for me is being comfortable in his presence. feeling at ease and not being rushed and taking time for his patients. I leave with a feeling of comfort.
They also have a login system where you login and can ask anything to your neurologist or nurse or anyone assisting the MS clinic. this does require a password of course,which they then send you a code to login. this system works perfect for me from Monaco.
two weeks ago i had my yearly control,consisting of having my MRI and the following day seeing my neurologist. The outcome was all good. No new activity.
Yes it's not practical flying to Amsterdam for these yearly appointments but definitely worth it. it's actually exhausting but i think that's more a mental state of mind then anything else.
My point of this story is basically that having a good neurologist is very important,and feeling comfortable with your neurologist. You may need to travel an hour or three hours or to a different country,but at the end of the day if this neurologist or any other medical team is good,it's so worth the travel time. It's not ideal but i can tell you from my experience that it's well worth it.
Oh yes i forgot to mention that i was born in Holland :) So speaking in my own language does of course help things. Mind you i was a young girl when i left to Australia but it's still the language i speak now.
Anyway i hope everyone has their own fantastic neurologist and if not,keep searching. There is one out there for sure!!
Feel free to follow me on my blog :)
Take care,
Mas x
while in Australia i got the nasty flu which left me feeling sick for a long time. What i realised travelling from both continents,that i don't have any MS back up or support at all. I have been trying to set up my MS support in both countries and both not succeeding .
In Australia they do have very good neurologists and specialised in MS. The problem is getting into the system or being put on a waiting list. By the time i get my information i need to leave countries again. I stay for two months and sometimes up to three months. You would have thought this gives you enough time but honestly the time just goes by. Being struck with the flu and then out of order for a month doesn't help either.
So i am back in Monaco,and there are no MS specialist or great neurologist that i have come across as yet. So again no back up here either.
My medical support is in Holland,in Amsterdam.My neurologist is an MS specialist at the VUMC in Amsterdam and they have a whole section just for MS. I must say their system is fantastic.
My neurologist is very good and knows what he is talking about and hence many years of experience. The most important for me is being comfortable in his presence. feeling at ease and not being rushed and taking time for his patients. I leave with a feeling of comfort.
They also have a login system where you login and can ask anything to your neurologist or nurse or anyone assisting the MS clinic. this does require a password of course,which they then send you a code to login. this system works perfect for me from Monaco.
two weeks ago i had my yearly control,consisting of having my MRI and the following day seeing my neurologist. The outcome was all good. No new activity.
Yes it's not practical flying to Amsterdam for these yearly appointments but definitely worth it. it's actually exhausting but i think that's more a mental state of mind then anything else.
My point of this story is basically that having a good neurologist is very important,and feeling comfortable with your neurologist. You may need to travel an hour or three hours or to a different country,but at the end of the day if this neurologist or any other medical team is good,it's so worth the travel time. It's not ideal but i can tell you from my experience that it's well worth it.
Oh yes i forgot to mention that i was born in Holland :) So speaking in my own language does of course help things. Mind you i was a young girl when i left to Australia but it's still the language i speak now.
Anyway i hope everyone has their own fantastic neurologist and if not,keep searching. There is one out there for sure!!
Feel free to follow me on my blog :)
Take care,
Mas x
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