MS in all its glory

LegacyUser

Woke recently with one side of face paralysed, responded well to IV steroids. From MRI the neurologist is "99% sure" that it's MS. Awaiting lumbar puncture results& due to attend consultation soon. Assuming it is MS, what sort of questions do you recommend asking the neurologist? Also, in terms of relapses, is it likely that they will always involve the face to some degree or another? (sounds vain, but I'm female!). Also, is there a genetic element- should my siblings have an MRI or is that just a waste of time? Any advice sincerely appreciated.

discobeaker

Hi all

Eh,i dont really know what to say on here as im not overly sure whats going on but i will try to explain. About 3 months ago i started to get a blurred vision in 1 eye and a pain behind it. My Optician sent me up to the hospital straight away as i had a field test and couldnt see properly. Ive been in and out of the matter the past 2 months and had a test where they inject dye into you and take pictures of your eyes and did another field test,given the all clear from them but i have to go for an MRI scan on Sept 18th (My birthday, so thanks HSE) as they think i could have MS but they just have to make sure.

From reading up and talking to someone who has MS about it im finding out more about symptoms, im tired alot,i feel dizzy,weak legs, no energy,my mind is all fuzzy,cant feel my fingers on my right hand then my eyesight but thats come back thankfully.

The wait is killing me (6 more weeks) but can anyone tell me more about the MRI scan. Can they tell you there and then if i have MS or not? I have read about something called CSF,something to do with your spine. Will i get that done with my MRI???

I really am clueless about what is going on or what MS really is and how it will effect me if i have it. Can anyone shed any light or even any questions i should ask the doctors. Im really that clueless.

Sorry about the rant.

Mushaboom

Hi adfaad and discobeaker, I'm going to try and answer your questions the best I can but I recommend you also check out the new and before diagnosed forum on the MS society in the UK's site. www.mssociety.org.uk/forum and also write down any questions that come to mind before meeting your neuro.

I'm sure many of us here know what it's like to be in limboland and it's a very frustrating place to be!

adfaad wrote: »

Woke recently with one side of face paralysed, responded well to IV steroids. From MRI the neurologist is "99% sure" that it's MS. Awaiting lumbar puncture results& due to attend consultation soon..

Adfaad, I do not want to frustrate you but sometimes the diagnoses process is a lengthy one with many tests. The neurologists use the Mcdonald criteria to diagnose. Please google it, I think it might be helpful.

Assuming it is MS, what sort of questions do you recommend asking the neurologist?.

I recommend you write down any symptoms you're experiencing. Bring a list of questions and concerns and bring someone with you.

Also, in terms of relapses, is it likely that they will always involve the face to some degree or another? (sounds vain, but I'm female!). Also, is there a genetic element- should my siblings have an MRI or is that just a waste of time? Any advice sincerely appreciated.

Unfortunately when or how you'll relapse is not forseeable, I really wish it was! But not all of my relapses have affected my face in fact the closest was my jawline and scalp.

No, it is not believed to be genetic, there is no known cause but I'm the only family member with it. It's quite a rare illness to be honest.

discobeaker wrote: »

Hi all

Eh,i dont really know what to say on here as im not overly sure whats going on but i will try to explain. About 3 months ago i started to get a blurred vision in 1 eye and a pain behind it. My Optician sent me up to the hospital straight away as i had a field test and couldnt see properly. Ive been in and out of the matter the past 2 months and had a test where they inject dye into you and take pictures of your eyes and did another field test,given the all clear from them but i have to go for an MRI scan on Sept 18th (My birthday, so thanks HSE) as they think i could have MS but they just have to make sure.

From reading up and talking to someone who has MS about it im finding out more about symptoms, im tired alot,i feel dizzy,weak legs, no energy,my mind is all fuzzy,cant feel my fingers on my right hand then my eyesight but thats come back thankfully.

Discobeaker, I'm curious did anyone mention optic neuritis to you?

One thing 6 weeks to wait for an MRI is actually brilliant the waiting list is 2 years long for most so that's a good thing.

There are so many symptoms of MS that are also symptoms of other illnesses that it's quite difficult to diagnose, look at my response to adfaad on that.

The wait is killing me (6 more weeks) but can anyone tell me more about the MRI scan. Can they tell you there and then if i have MS or not? I have read about something called CSF,something to do with your spine. Will i get that done with my MRI???

I really am clueless about what is going on or what MS really is and how it will effect me if i have it. Can anyone shed any light or even any questions i should ask the doctors. Im really that clueless.

Sorry about the rant.

The MRI is a small tunnel like machine, you're asked to stay still in it while they scan you. It's noisy but they give you earphones with some music on it. The sound it makes is very like Lady Gaga's poker face lol.

The CSF is your spinal fluid, they may need a sample of it with a lumbar puncture or they may not. In the MRI, They may use an injected dye called contrast, it doesn't hurt.

I hope this has helped you two and I do recommend the MS Society UK forums for more support.

Mushaboom

discobeaker

Hey Mushaboom

Thanks so much for the reply.

Yeah the Optician mentioned optic neuritis,he said it was like a cousin of MS if i remember then when i went to the eye clinic in the Matter they mentioned afew times about MS more so than optic neuritis.

I have been lucky to get the MRI so quickly i think i was put down for it at the end of April come to think about it so it has been quick. Roll on 6 weeks.

So can they tell you straight away if you have MS or do they need to go and study it and call you back.

The guy i was talking to about MS (he found out he had it a year ago) he was telling me about his MRI scan. He put the headphones in and got in the machine,next thing the music started to play and it was the theme tune to the Exorcist!!!!!! Scared the bejesus out of him he said haha.

byhookorbycrook

Unlikely that they would read the MRI there and then, you'll probably have to wait to talk to the neuro.

discobeaker

Ok,thats cool. So i might sort of be able to enjoy my birthday then.
Is there anything i should ask the doctors or anything. As i said,im clueless about this whole thing but im slowly learning about MS from talking to a guy who has it and from reading on this thread and online.

byhookorbycrook

Initial symptoms such as optic neuritis are usually a sign of a "better " MS progression. There is a slight genetic link, but it's absolutely tiny percentage wise. You should ask the neuro what treatment will be best for you. The DMD (disease modifying drugs) don't cure or even halt MS, but they do help slow progression down.

Any other questions, just ask and if you want to ask something of a personal nature, feel free to pm.

discobeaker

Thanks so much byhookorbycrook. Its a big help to have people on here to talk to. I really appreciate all your input guys and gals. Roll on Sept 18 for my MRI

byhookorbycrook

There are lots of us around!

Worried 27

Hi everyone, as of yet have not been told I have ms. Got sick in may with severe headaches and got admitted to hospital and was told they were only migraines and got sent home. About 6 weeks later headaches came back only worse, got admitted to hospital and got a head ct, then an MRI, blood tests and to top it all of an LP ( which are far from enjoyable). Doctor came to break the news that it looks like I have ms from the MRI. I'm sure I'm not the only one who got floored when hearing does words. I just got my appointment to see the neuro on the 27th of this month and I'm terrified of what he is going to tell me. I've a great husband who is my rock who is trying to hold me together and the rest of my family are just in denial which does not help. Have spent a few weeks dreading what the future holds and if I can look after my two year old daughter and be able to do all the things I want to with her. I have read all this thread and am amazed by you all, you all seem so positive and able to deal with what life has given you. I on the other hand am finding it difficult to get on with every day life while waiting to find out if I have ms or not. The only real symptoms I have are my hand going numb on occasion it's only happened a few times and being tired all the time. You all seem to have lots more symptoms than me. Thanks for listening, I think I just needed to vent to people who understand because I just can't seem to.

val444

Worried 27, I do feel for you. It is hard. I think I was lucky in a lot of ways, I had my first symptoms in February 2011, googled it, became convinced I had MS, eventually went to the doctor in April, and got my definite diagnosis in September. All in all, pretty quick, compared to other stories I have heard.

I think what actually helped was the doctor telling me I probably didn't have a brain tumor. When you think about it like that, it kinda puts it into perspective. Yes, MS sucks, but god, it could be so much worse. Injecting yourself every day isn't pleasant, but it is not the worst thing.

Be positive, try to avoid googling it, you will only read horror stories, and use boards as a place to vent or ask questions, and I promise, a year from now, you will feel much much better.

Mind yourself.

Worried 27

Val444, thank you firstly for relying to my rant ; ) today has been one of my bad days and I just needed someone like yourself who can put me straight. Having a family is great to talk to but sometimes I feel like they try not to talk about the bad stuff or try to make it sound not as bad.

My husband said the same thing that we are lucky it's not a tumor or something equally as bad. I am trying to be positive but unfortunately I'm a worrier I always have been.

The truth is I just want to know if I do have ms or not the waiting is the hard part I feel. I'm sure when the time comes and I know for sure i'll have all the questions in the world for boards.

Thanks again and I'm so happy to hear you are doing better.

byhookorbycrook

Worried, people(in full health of course) tellling me "Ah sure it could be worse you could have cancer/leprosy/the galloping whatever" came close to getting a few slaps at the time. I had to decide ,in my own time, yes, it could be worse, but don't try and patronise me!

I was diagnosed in 2001, am still working, riding my horse etc. Sure, life is different, sure there are times I cry for not being able to go places/do things,but at the end of the day,we are all still alive.

There is great work going on with all kinds of research. I am on Tysabri, which initally freaked me out because I googled...a very kind poster here sent me a few p.ms and really helped. (I actually met them after at Tysabri infusions.)Keep in touch and we'll try and help you as much as we can. Stay strong. X

Mushaboom

Hey All,

Anyone here on Gilenya? I'm currently deciding whether to go on it or not and I'm trying to source as much info as possible on it. I wanted to be offered it and now that I have I'm having second thoughts, silly really.

Mush

fergal.b

My wife started on it a few weeks ago and has had no side affects like she did on the rebif, it's a bit early yet but so far so good

byhookorbycrook

Mushaboom wrote: »

Hey All,

Anyone here on Gilenya? I'm currently deciding whether to go on it or not and I'm trying to source as much info as possible on it. I wanted to be offered it and now that I have I'm having second thoughts, silly really.

Mush

Why are you thinking of it now?

Worried 27

byhookorbycrook wrote: »

Worried, people(in full health of course) tellling me "Ah sure it could be worse you could have cancer/leprosy/the galloping whatever" came close to getting a few slaps at the time. I had to decide ,in my own time, yes, it could be worse, but don't try and patronise me!

I was diagnosed in 2001, am still working, riding my horse etc. Sure, life is different, sure there are times I cry for not being able to go places/do things,but at the end of the day,we are all still alive.

There is great work going on with all kinds of research. I am on Tysabri, which initally freaked me out because I googled...a very kind poster here sent me a few p.ms and really helped. (I actually met them after at Tysabri infusions.)Keep in touch and we'll try and help you as much as we can. Stay strong. X[/Quote



Byhookorbycrook, it's great to finally have people on here who understand what I'm thinking and feeling. People with really knowledge of ms im really only starting to get to know really what I might have to face. Just hope I get diagnosed soon with whatever I have but I'm pretty sure it's ms and the doctor seemed pretty convinced that it is ms to.

I'll do my best to stay positive not always easy when u don't feel well and you know there is something wrong. X

Mushaboom

byhookorbycrook wrote: »

Mushaboom wrote: »

Hey All,

Anyone here on Gilenya? I'm currently deciding whether to go on it or not and I'm trying to source as much info as possible on it. I wanted to be offered it and now that I have I'm having second thoughts, silly really.

Mush

Why are you thinking of it now?

I was taken off the rebif and offered gilenya or copaxone. Trying to decide but actually finding the decision quite hard.

Mushaboom

fergal.b wrote: »

My wife started on it a few weeks ago and has had no side affects like she did on the rebif, it's a bit early yet but so far so good

That's great to hear, thanks Fergal.

Worried 27

Hey everyone just wondering I'm still waiting on the LP results can they tell for sure from testing it that I have ms or will I need more tests done when I see the neuro

byhookorbycrook

Mushaboom, any talk of Tysabri for you?

Worried, a LP and MRI are the most common tests, there is no one test for MS, which makes it so hard to diagnose.

Worried 27

byhookorbycrook wrote: »

Mushaboom, any talk of Tysabri for you?

Worried, a LP and MRI are the most common tests, thyere is no one test for MS, which makes it so hard to diagnose.

Byhookorbycrook, thanks for the reply, I got the LP done a few weeks ago and I'm still waiting on the results apparently the hospital they sent it to to be tested said what ever machine that does it was not working that's why it's taking so long to Come back. Was hoping to have results this week but no news as yet. Good to know I've the two most common tests done anyway. Hopefully the results will come soon.
Thanks again

Mushaboom

byhookorbycrook wrote: »

Mushaboom, any talk of Tysabri for you?

No mention of it, for me anyway. Had another MRI today so maybe when they see the results!

byhookorbycrook

Tysabri has been very good to me, no relapses since 2009I'd ask why it's not mentioned.

val444

@Mush,

I have been on Copaxone for eight months, but the neurologist now wants me to try Gilenya or Tysabri. I didn't mind Copaxone at all, injecting every day doesn't bother me though, it might bother some people. I do have some fairly significant reactions, which I ignored when I thought Copaxone was doing its thing. Now that I have learned that it is not, I am a bit more frustrated when faced with a big hot itchy lump every night!

I am leaning towards Tysabri at the moment, rather than Gilenya, because Gilenya can slow your heart rate, and mine is actually pretty slow as it is! However, I kinda feel like I am being pushed to have a baby first! My original plan had been to give the Copaxone two years to work, and then come off it to try and get pregnant. Now however, as it isn't working, rather than start on a new regimen straight away, the doc thinks I could just take the opportunity to have a baby now! Not sure yet, have until January to decide!

Actually, this information might be useful for other women faced with this issue. I always thought that you had to be trying for a baby for a certain length of time before you could investigate possible reasons for not getting pregnant. However, I spoke to my GP recently about my worries about not being on any MS medication while trying to conceive, and she immediately ran blood tests, and scheduled an ultrasound to make sure all my bits were in working order. Next we will check out my husband. I know there are no guarantees, but at least I won't be trying for years in vain while not knowing about any possible obstacles!

discobeaker

Can someone explain to be what the episodes or relapses are??? I spoke to someone about it and he told me but he was in a rush so i didnt get the full meaning of it. He was saying something about his legs went numb and he couldnt walk. Do they vary or how do you know your having one???

Im a month away from my MRI scan so im just trying to get as much info as i can. This thread has been really helpful

Mushaboom

@Val

That sounds like a very daunting choice in front of you. If you feel it's not the right time, I wonder what would be wrong with trying a new treatment for a year or two before trying to conceive? At least you'll have a treament you're happy with to go back onto. But in saying that it's never a good time to have a baby so now is probably as good a time as any lol.

Mushaboom

Hey Discobeaker,

I'd advise you look on the MS Ireland website, shift MS is a great one too with you tube videos. It might be helpful in your research.

Try not to stress out though, it's different for everyone.

Mush

discobeaker

Thanks for that Musha.

Im trying not to stress,the next month is going to drag by but im trying to stay busy and keep my mind off things. I must check out the You tube you mentioned. Thats alot of help. Thanks again

val444

@Mush

Ah yeah, never the right time. I was always baby mad though, and just got married in June. If things had been normal, we would absolutely be trying by now, so I don't know why I am reluctant, only that I worry about not being on any drugs while trying. I don't wanna take a few years off medication to try and have a baby, only for my MS to get worse! I also feel guilty about bringing a baby into a home where I don't know what the progression of my MS will be, but my husband keeps pointing out that no one knows, having a baby, what the future will bring, and I understand that on a rational level. Doesn't stop the worry though.

@Discobeaker

A month is not a long time on the scale of things, and you and your doctor seem pretty confident that it is MS. If I were you, I would spend the month doing things that you cannot do so easily with a confirmed diagnosis! For example, I was closing on my first house when I was going through what you are now, and the doctor very deliberately scheduled my last appointment (when I would be told for definite) for after the sale had gone through, in case it affected my mortgage. So get life assurance, go sky diving, do something!