MS in all its glory

val444

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

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

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

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

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

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

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

@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

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

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

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

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

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

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

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


That's my excuse anyway.

byhookorbycrook

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

coughdrops

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

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

Splendour

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

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

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

Yeah, I am sure it's not pleasant!

outnumbered82

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

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

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

Hope you get some answers soon.

pbarr

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

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

pbarr

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

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