MS in all its glory

ANXIOUS · 09-07-2012 6:51pm

val444 wrote: »

Hi Anxious,

I am 26 and I was diagnosed last year. It is good that you are taking an interest, it will be really helpful to your partner. I have never noticed limb swelling that couldn't be explained by a site reaction to the injections.

I do get joint pain, like Outnumbered. However, I have actually had a doctor tell me that I am wrong, because MS does not cause pain. Dope.

It is funny, because I never thought there was anything wrong with me, until suddenly there was. Looking back on it though, I have had mild MS symptoms for as long as I can remember. It is crazy how many small things you can ignore.

Best of luck with everything. Be sure to ask as many questions as you need to.

Thanks for that Val we were at the consultant earlier today there has been new legions since the last scan so he has recommended that she goes the medication route. So in am just reading up on the drugs he gave us information about.

I can't remember which type he said she has. Is there any support groups that meet up or some sort of buddy system? Ms Ireland isn't very helpful.

outnumbered82 · 09-07-2012 11:26pm

Has she had many attacks. I was told it took 2 to know for certain that you had MS i had 2 one with my leg and the other with my eye before they knew for sure.

I was told about ms ireland that you could join a support group through them but back last year i didnt want to, but looking back now i think it would of been good for me to talk to a 3rd party. You dont know how much you have on your shoulders even when you have a good support group around. So if your partner has a chance to speak to any one from MS ireland she should do it.

I dont know what they have advised her to take. Im on rebif i take it 3 times a week, to be honest it was a night mare at the start but bit by bit it got better. Now i have no side effects and the the injections arent leaving marks as much any more.

ElleEm · 10-07-2012 12:54am

Anxious, There is an MS group on meetup.com who meet every fortnight in Dublin, and I know the MS Society in my area (North Dublin) organise regular coffee mornings and talks and stuff. I also met a very supportive and lovely friend through this very thread

ANXIOUS · 10-07-2012 8:04am

Thank you for all that information, I will have a look at those websites later. I don't think she has had any attacks as such. She intermittently has pins and needles in one of her arms.

I suppose the worst thing at the moment is we don't know how it is going to affect her. I think I will look into going to some group meetings, I don't think she is quite ready to.

fergal.b · 10-07-2012 8:41am

My wife still hasn't gone to any group meetings after 10 years I think she might be afraid of seeing what she might become she even hates going to the clinic, maybe she will come around to it one day as I feel she needs to talk to someone sometimes. I can say I know what she is going through but in reality I can only guess.

ElleEm where is the group in North Dublin based I'm in barothery so maybe I could try and talk her into going to one, she is quite down at the moment and having a hard time recovering after an operation she has also just last week started on the new oral drug so a lot on her plate at the moment.
I see you mentioned coffee mornings, I take it they are not too early in the morning as it takes a while for her to charge her batteries

Thanks.

coughdrops · 10-07-2012 8:52am

Anxious, I was diagnosed in July '10, I was coming up to my 30th. Personally speaking I've never been to a group or to speak to someone, it's not been something I've ever really wanted to do. I recently had a visit from our local MS Ireland Office (NW) and I think I'll start taking part in some of their meet-ups / events. They have one coming up for couples, which I think will be useful me and my husband.

fergal.b- I am a bit like your wife, in that I don't like going to the clinic and seeing how bad other patients have got. I prefer to muddle on and not worry too much about the future.

val444 · 10-07-2012 8:53am

Hi Anxious,

I have never been to a group meeting. I was actually supposed to go to one, but I slept it out! I have been very lucky, as mentioned earlier in this thread, and I do have lots of friends and family I can talk to. It is actually my husband who wants to go to a group meeting, and I think it is more for him than me. Remember that this affects you too, and look after yourself. Everyone has been wonderfully supportive of me, and I think he gets left out in the cold a bit.

For what it's worth, I chose Copaxone, as it was the only one which didn't list flu-like symptoms as a side effect. I have no fear of needles, so injecting every day doesn't bother me at all. However, the site reactions are unpleasant, and though I thought they were going away, they suddenly came back, worse than ever. Plus I recently had my first go of steroids, for eye trouble, which was disappointing.

There are lots of booklets and videos to help you make up your mind about which med to go for. To be honest, I think half the time people just close their eyes and pick one!

Nobody knows how MS will affect anyone, and that is the hardest part, definitely. It is weird how fast you get used to the unknown though!

coughdrops · 10-07-2012 8:57am

Just to add:

Re books and leaflets- I read "MS for Dummies", which I found really good. It was eaier to read than some of the other books I tried.

I am on Copaxone too, and don't mind it, but like val444 I get some sore needle-site reactions every now and then. I was on Rebif previously and it disagreed with me.

ANXIOUS · 10-07-2012 9:13am

fergal.b wrote: »

My wife still hasn't gone to any group meetings after 10 years I think she might be afraid of seeing what she might become she even hates going to the clinic, maybe she will come around to it one day as I feel she needs to talk to someone sometimes. I can say I know what she is going through but in reality I can only guess.

Thanks.

Hi Fergal, do you mind uf i ask you a few questions if you do please ignore the below Have you noticed your wife's condition getting worse over the years?
Are you able to jold fill tome employmebt down outside of the house?
Also did the operation have something to do with her ms?
We discussed the oral medication yesterday however he said it was available for people as a first resort.

As a general question to everyone have you had kids after you were diagnosed or do you intend on having kids in the future?

fergal.b · 10-07-2012 10:07am

Hi Anxious, she has gotten worse over the last few years but then again everyone is different, She had to give up driving and that was a big loss to her independence also this year we had to get a wheelchair and that was a hard thing for her to give in to,she did have to use one before so it may not be a permanent thing.

I am a full time carer now as my son has cerebral palsy and my wife can no longer look after him.

The op was for gallbladder removal nothing to do with MS she's just unlucky this was her 13 op "nothing to do with MS" and with all the scar tissue they were not able to do it laparoscopic so it was a big one.

The new durg is still on trial and awaiting funding I think there is only 65 people on it at the moment, she had been on rebif before that but was getting very bad side affects.

She was diagnosed 10 years ago just after our son was born but they said she had it long before that and the birth just brought it to the surface. I don't think there is anything stoping you from having kids and the risk of passing on MS is very small if any, she might have to come off her meds and doctors will have to keep a close eye on her as beening pregnant can put a big strain on a body.
This may answer some of your questions http://www.ms-gateway.ie/understanding-ms/faqs/can-i-have-children-88.htm

val444 · 10-07-2012 10:56am

Hi Anxious,

I have every intention of having babies, and we were just recently married, so if things were normal, would be trying now! However, my neurologist has asked me to give Copaxone two full years before trying, and I only started last December. Two years is not a huge length of time, and it might actually suit us in the long run. I am to give up Copaxone then for at least three months before trying, and if breastfeeding, I can't go back on it until after that. Pregnancy is supposed to actually hold MS at bay though, so I don't feel it is too much of a risk.

I do worry about having trouble looking after my baby, but I guess everyone does, MS or not! I work a really demanding job, which I love, and yeah, I am exhausted, but I would prefer that to giving in! It is still early days for me, but I will work as long as I can, have as many babies as I can, and pretty much ignore MS until I absolutely have to acknowledge it.

You seem really supportive, she is lucky.

ANXIOUS · 10-07-2012 11:09am

fergal.b wrote: »

Hi Anxious, she has gotten worse over the last few years but then again everyone is different, She had to give up driving and that was a big loss to her independence also this year we had to get a wheelchair and that was a hard thing for her to give in to,she did have to use one before so it may not be a permanent thing.

I am a full time carer now as my son has cerebral palsy and my wife can no longer look after him.

The op was for gallbladder removal nothing to do with MS she's just unlucky this was her 13 op "nothing to do with MS" and with all the scar tissue they were not able to do it laparoscopic so it was a big one.

The new durg is still on trial and awaiting funding I think there is only 65 people on it at the moment, she had been on rebif before that but was getting very bad side affects.

She was diagnosed 10 years ago just after our son was born but they said she had it long before that and the birth just brought it to the surface. I don't think there is anything stoping you from having kids and the risk of passing on MS is very small if any, she might have to come off her meds and doctors will have to keep a close eye on her as beening pregnant can put a big strain on a body.
This may answer some of your questions http://www.ms-gateway.ie/understanding-ms/faqs/can-i-have-children-88.htm

Thank you for answering my very intrusive questions, I can only imagine how hard it must be on you. It's not fair that anyone has to go through what your family is.

I am trying to be optimistic, I have no reason not to be. The consultant isnt too concerned. I just wish we knew more, did you find that the increase in the number of legions was directly related to the ms symptoms?

coughdrops · 10-07-2012 11:39am

Hi Anxious, we don't have kids yet either. We only got married recently, so it's not on the agenda for another while anyway. We've been told there is no reason why we can't have them (from a MS perspective). Like val444, I've not been on Copaxone long enough yet.

It's good to see you checking all the different things for your OH, and taking an interest. The one thing I will say, this illness is so different for everyone, and before I was diagnosed my family and friends only knew of people with really progressive MS (the people that you can "see" to have it, who are in wheelchairs etc). When you start to get your head around the info, you'll find that a lot of people will hopefully not get to that stage thanks to the meds. So, if her consultant isn't too concerned, I'd take your cues from them.

I had no lesions in an MRI in 2008, but in 2010 I had a few (I don't remember how many

) I've probably had symptoms for years, but it only came to a head in 2010 when I lost a lot of power in my right arm. Then I was diagnosed, put on steroids for 2 weeks, and since I've been on Copaxone I haven't had a relapse like that. I have relapse remitting MS by the way, that might be what the consultant called your OHs?

ANXIOUS · 10-07-2012 12:00pm

coughdrops wrote: »

Hi Anxious, we don't have kids yet either. We only got married recently, so it's not on the agenda for another while anyway. We've been told there is no reason why we can't have them (from a MS perspective). Like val444, I've not been on Copaxone long enough yet.

It's good to see you checking all the different things for your OH, and taking an interest. The one thing I will say, this illness is so different for everyone, and before I was diagnosed my family and friends only knew of people with really progressive MS (the people that you can "see" to have it, who are in wheelchairs etc). When you start to get your head around the info, you'll find that a lot of people will hopefully not get to that stage thanks to the meds. So, if her consultant isn't too concerned, I'd take your cues from them.

I had no lesions in an MRI in 2008, but in 2010 I had a few (I don't remember how many ) I've probably had symptoms for years, but it only came to a head in 2010 when I lost a lot of power in my right arm. Then I was diagnosed, put on steroids for 2 weeks, and since I've been on Copaxone I haven't had a relapse like that. I have relapse remitting MS by the way, that might be what the consultant called your OHs?

I am not actually sure what type she has, neither I she. I think I'll have a look at previous letters he has sent and see if he mentions it. From my reading so far there seems to be four main drugs and the new oral tablet. She doesn't have to make a decision for a few months but like this condition every drug is going to affect people differently so I feel it will be just trial and error.

The thing that I am thinking about if she has no symptoms besides intermittent pins and needles is it worth risking a bad reaction with the drugs?

coughdrops · 10-07-2012 12:07pm

ANXIOUS wrote: »

The thing that I am thinking about if she has no symptoms besides intermittent pins and needles is it worth risking a bad reaction with the drugs?

My understanding is (and I could be wrong) that the drugs will somewhat halt MS where it is now, and stop it progressing.

I'd go through the info on each option available and see what (if any) suits your OH best. It could involve some trial and error- I just never took to Rebif, but once I swapped to Copaxone I was much happier.

fergal.b · 10-07-2012 12:18pm

It's not that my life is hard it's just different,:D My son can't walk or talk but for some resin he is always happy and thats all that matters in this world if there was a magic pill that would change him so he would be like every other kid I wouldn't give it to him as he's perfect as he is and I wouldn't change him for the world.:D

Quote "I just wish we knew more" I guess thats the thing with MS you just don't know what going to happen next, the increase in legions would be related to MS but there is no way of knowing what way they will affect her if the do, hopeful the drugs will be able suppress them.

.

ANXIOUS · 10-07-2012 12:22pm

coughdrops wrote: »

My understanding is (and I could be wrong) that the drugs will somewhat halt MS where it is now, and stop it progressing.

I'd go through the info on each option available and see what (if any) suits your OH best. It could involve some trial and error- I just never took to Rebif, but once I swapped to Copaxone I was much happier.

I am under the same impression, apparently it slows down the amount of lesions on the brain by 25%

val444 · 10-07-2012 1:35pm

@Anxious, I am not a doctor, and forgive me if I am wrong, but my understanding is that the meds are only for Relapsing/Remitting, so it would seem to me that if the consultant is talking to you about meds, this must be the type they are currently assuming she has?

@Fergal, nice schnap!

ElleEm · 10-07-2012 2:01pm

fergal.b wrote: »

ElleEm where is the group in North Dublin based I'm in barothery so maybe I could try and talk her into going to one, she is quite down at the moment and having a hard time recovering after an operation she has also just last week started on the new oral drug so a lot on her plate at the moment.
I see you mentioned coffee mornings, I take it they are not too early in the morning as it takes a while for her to charge her batteries

Thanks.

The Meet Ups with the MS Society vary, but I know the project worker for the MS Society in North Dublin in trying to organise a regular coffee morning out this way, (I'm in Balbriggan). They often have talks and stuff in one of the Airport hotels. The MS Society project worker's name is Mary, PM me if you would like her number.

ANXIOUS wrote: »

The thing that I am thinking about if she has no symptoms besides intermittent pins and needles is it worth risking a bad reaction with the drugs?

The drugs aim to prevent further relapses and symptoms. MS is progressive, whether we like it or not, so the earlier people start meds (IMO), the better!! I've been on Copaxone since diagnosis (Oct 2010, aged 27) and have had no side effects other than slight site reactions.

ANXIOUS · 10-07-2012 3:44pm

ElleEm wrote: »

The drugs aim to prevent further relapses and symptoms. MS is progressive, whether we like it or not, so the earlier people start meds (IMO), the better!! I've been on Copaxone since diagnosis (Oct 2010, aged 27) and have had no side effects other than slight site reactions.

Yeah you are probably right, it is a lot of information to take in.
So hopefully when we see the next consultant she will be better placed to make the right decision for her.

coughdrops · 23-07-2012 2:14pm

Hi everyone

Quick question for you: the weather all weekend has been gorgeous, but does anyone find that the sun / warmth makes your fatigue worse? I think it affects me, and I try to stay in the shade and keep cool, but today I'm finding my limbs very heavy and slow. So I am wondering if there is any connection or is it all in my head?

ElleEm · 23-07-2012 3:28pm

coughdrops wrote: »

Hi everyone

Quick question for you: the weather all weekend has been gorgeous, but does anyone find that the sun / warmth makes your fatigue worse? I think it affects me, and I try to stay in the shade and keep cool, but today I'm finding my limbs very heavy and slow. So I am wondering if there is any connection or is it all in my head?

The heat definitely makes me a little weaker in the limbs. I don't suffer with the traditional MS fatigue, but I notice the heaviness in my arms gets worse with heat. I have to shower with the window open and have to have a little 5 min rest when I get out (again, under the breeze from the window) as my limbs are a bit weak, and "floppy" for want of a better word. The sunshine also plays havoc with my optical neuritus.

coughdrops · 23-07-2012 3:42pm

Thanks ElleEm.

Went to walk to shop at lunchtime, and my legs were so heavy. Felt like an effort to lift them.

Now that you mention it, my eyes are blurrier too (somewhere I can hear my husband shouting "it would help if you wore your glasses

). Probably due an eyetest anyway.

So much for sunlight and Vit D being good for me

ElleEm · 23-07-2012 3:51pm

coughdrops wrote: »

Thanks ElleEm.

Went to walk to shop at lunchtime, and my legs were so heavy. Felt like an effort to lift them.

Now that you mention it, my eyes are blurrier too (somewhere I can hear my husband shouting "it would help if you wore your glasses ). Probably due an eyetest anyway.

So much for sunlight and Vit D being good for me

Oh I know, Vitamin D is good, sunshine and heat, not so much! I am out of my second shower today hoping to cool down. Although did a load of housework earlier so probably not the best idea, I am totally overheating!!

coughdrops · 23-07-2012 3:57pm

Fair play to you- I wouldn't be able for housework today!

That's my excuse anyway.

byhookorbycrook · 23-07-2012 7:36pm

Being affected by warm weather is a recognized. side effect of MS

coughdrops · 24-07-2012 1:49pm

I feel like sh*t and want to go home to bed and cry with tiredness and frustration.

Sick of feeling like an old woman shuffling about the office.
Sick of dragging myself into work and not being able for it.
Sick of people asking "is there something you can take?", like there is a magic pill and I have just decided not to take it, for the laugh.

(I know this will all pass in a couple of days when I am feeling better, but for now it was better to rant here than at my colleague who is doing. my. HEAD. in.)

Sorry folks!

byhookorbycrook · 24-07-2012 7:23pm

Hugs to you Coughdrops. Spare me "But you look so well" brigade.

Splendour · 25-07-2012 9:59am

Can I ask how all of you here with MS have been diagnosed?
Was it through a MRI scans/lumbar puncture etc. or has anyone been diagnosed purely by a Neurologist doing some simple tests in their office?

Also, I've scanned through the thread but I don't see any mention of brain fog. Anyone suffer with that?

coughdrops · 25-07-2012 10:09am

The neurologist did some simple tests the first time I met him. He was pretty sure it was MS from those, plus my symptoms at the time. Then I was brought into hospital for tests - bloods, xrays and MRI. I was also on IV steroids during this time, as I had a really bad flare up at the time.

The MRI showed up the lesions, and confirmed diagnosis.

I don't know what brain fog is, sorry!

Splendour · 25-07-2012 10:55am

coughdrops wrote: »

The neurologist did some simple tests the first time I met him. He was pretty sure it was MS from those, plus my symptoms at the time. Then I was brought into hospital for tests - bloods, xrays and MRI. I was also on IV steroids during this time, as I had a really bad flare up at the time.

The MRI showed up the lesions, and confirmed diagnosis.

I don't know what brain fog is, sorry!

Thanks for that coughdrops. Lucky you not knowing what brain fog is...

coughdrops · 25-07-2012 10:59am

Yeah, I am sure it's not pleasant!

outnumbered82 · 25-07-2012 1:37pm

I had Mri scans and a lumbar puncture before they knew for sure what it was. But have been told since that they knew from the start they just had to do all the other tests just incase.

Dont have brain fog what is it?

byhookorbycrook · 25-07-2012 7:45pm

Neuro was fairly sure, MRI then confirmed it. Brain fog = unclear thinking, not able to gt the right word out and so on. Vit B helps me, but if I'm tired it's worse.

Splendour · 26-07-2012 9:54am

byhookorbycrook wrote: »

Neuro was fairly sure, MRI then confirmed it. Brain fog = unclear thinking, not able to gt the right word out and so on. Vit B helps me, but if I'm tired it's worse.

That's about the gist of brain fog though it can get so bad at times it is difficult to function-it's like being hungover with a bad cold. I suffer with dreadful fatigue/weakness but I'd rather have that any day than the dreaded brain fog!

Thank you for sharing with me- I have lesions on my brain and fatigue/weakness amongst other symptoms. Am undiagnosed as yet, told I don't have MS and was just curious as to how others were diagnosed with it.

Hope you're all doing as well as can be expected today...

byhookorbycrook · 26-07-2012 7:33pm

Hope you get some answers soon.

pbarr · 28-07-2012 12:59am

I'm wondering is anybody here on Fampridine /Fampyra
info here: http://www.mstrust.org.uk/information/publications/factsheets/fampridine.jsp
Going on it next week so fingers crossed as my walking is bad.

byhookorbycrook · 28-07-2012 4:25pm

My neuro is talking about putting me on it, but I didn't think it was funded yet?

pbarr · 28-07-2012 5:17pm

byhookorbycrook wrote: »

My neuro is talking about putting me on it, but I didn't think it was funded yet?

I don't think it is funded but the company are doing some sort of trial at the moment where they pay for it. Can't imagine them doing that for too long though.

byhookorbycrook · 28-07-2012 8:38pm

Good stuff, let us know how you go. Best of luck with it.

LegacyUser · 30-07-2012 11:10pm

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 · 03-08-2012 3:34am

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 · 03-08-2012 12:48pm

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 · 03-08-2012 8:50pm

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 · 03-08-2012 9:25pm

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

discobeaker · 03-08-2012 9:52pm

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 · 04-08-2012 3:15pm

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 · 04-08-2012 9:38pm

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 · 04-08-2012 9:53pm

There are lots of us around!

Worried 27 · 08-08-2012 5:07pm

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.

MS in all its glory

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