MS in all its glory

coughdrops

Had my appointment today, and was in and out pretty quick. I realise some people don't like short appointments, but I do (unless I have a problem / query which I didn't today thankfully!)

They did a test on my hands, right vs left, putting pegs in the board. Haven't had that done before. Just highlighted to me how my right hand has lost dexterity- fumbled a bit witht the pegs. Was better with my left hand, although I am right handed. The MS doesn't really affect the left, typical!

Anyway that's the update post-SVUH!

CD

coughdrops

How is everyone this morning? Had a long busy week at work last week, and I am still very tired from it.

Do any of you take vitamin / tonic supplements to help with energy levels?

byhookorbycrook

I take omega oils, vit b, d, c and from time to time something like Vivioptal.Fatigue in MS is like no other kind, it really gets into your bones.I try to store up sleep, if I know I have an especially busy time ahead.

outnumbered82

I take amantadine for fatigue. I did try all the vitamin supplements but they didnt work

bnt

A story all over the entertainment news today, e.g. People magazine, suggests that we may have a new celebrity MS spokesperson: Jack Osbourne, son of Ozzy and Sharon, star of The Osbournes. The publicity is useful, I suppose.

coughdrops

After a weekend of feeling bad, this morning I feel awful. Fatigue has hit me like a bus. I could cry with tiredness, and would love another day in bed - slept away most of yesterday- but don't think the boss would be too happy

outnumbered82

Coughdrops you poor thing i hate the fatigue i didnt think i was tired this weekend but ended up in bed all day yesterday it really hit me after a busy weekend when everything settled down how tired i was. This morning i was up early but had recharged enough to get through the day, i even sat out in the sun for a while in the afternoon getting some well earned vitamin d!!

Fighting Irish

http://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/multiple-sclerosis-hypoperfusionreperfusion-theory/10150960894457211

Interesting read
Has anyone here had CCSVI treatment? Where and at what cost?

byhookorbycrook

It has been largely discredited, I'd stay well clear. I'd prefer something like Campath.

Denise75

Hi I'm new to this site as it was recomended by a friend. I'm in my early 30's and faced with the probability of having MS. I wonder if anyone could give me some advice as the unknown waiting is the worst feeling at the moment. About 2 yrs ago i lost sensation on the left side of my face and was sent for an MRI scan on the brain. I never recovered the sensation, all feels cold especially my mouth area and pain around eye and head area sometimes. About 4 to 5 weeks ago I developed swelling in both legs with pain down right arm and was sent to casualty by GP. I couldn't pass water for hours but doctors said couldn't find anything wrong and sent me home. 4 days later I was back to casualty with a severe pain down left arm and hand swollen. I explained to doctors the pain was like electricity going down my arm. My legs had a stiff or tight feeling that wouldn't go away, my right leg being worse than left. My GP said come back in a week or two if swelling didn't disappear. It reduced but other symptoms didn't disappear. I forgot to say I had numbness in smaller fingers but feeling returned.
I have an appointment to see a Neurologist in Dublin next month and the appointment can't come fast enough as I feel the symptoms are getting worse, maybe I'm worring too much but It's hard not to. I now have the pins and needles sensation in back of hands and yesterday got a severe burning sensation down the left arm. My legs I imagine are getting stiffer by the day.
I know It hasn't been verified that it is MS but a student doctor said it's either nerve damage or ms straight to my face, my GP was outraged by this but said I do have a lot of the symptoms similar to MS and so did a person I asked when I enquired with the MS society of Ireland. I'm pretty prepared for the obvious but can't stop crumbling and breaking down every so often especially at work.
Can anyone give me some words of advice in how to tackle this. From what I read everyone's condition different. One thing going for me is the previous MRI scan didn't show anything but a lot has changed since then!!

val444

Hi Denise75.

We can't give medical advice, and I am not even going to try and tell you what might be wrong. I could try and reassure you, but I don't think anything is going to calm you down at the moment. All I can say is that if it is MS, you are doing the right thing by pursuing it with a neurologist.

It is difficult, especially with symptoms like you are experiencing, but the best thing you could do right now is put any worries about MS or anything else, out of your head, and just concentrate on looking after yourself.

Another suggestion I found helpful is to write down any weird symptoms you have ever had, make an exhaustive list to show the neurologist, and then forget about it until your appointment.

Easier said than done, I know.

ANXIOUS

Is swelling in the limbs a sign of ms for people here?

outnumbered82

There are many symptons to ms. If you are worried about any symptons you might have you should go to your doctor

ANXIOUS

outnumbered82 wrote: »

There are many symptons to ms. If you are worried about any symptons you might have you should go to your doctor

Oh sorry no I don't think I have it, I'm just wondering if people that have been diagnosed have noticed there limbs would swell.

outnumbered82

No I have never noticed my limbs swelling, just joint pain from time to time

ANXIOUS

outnumbered82 wrote: »

No I have never noticed my limbs swelling, just joint pain from time to time

Thanks for that. Do you mind if I ask roughly how old you are and where when diagnosed.

outnumbered82

I was 28 when i was diagnosed

ANXIOUS

outnumbered82 wrote: »

I was 28 when i was diagnosed

Thanks for that, the situation I'm in is that my partner was diagnosed with ms but they only found it by chance they were looking for something else. She doesn't have any real symptoms at tge moment.

val444

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.

col.in.Cr

I had a friend who had MS,he left Ireland using a wheelchair to go live in Asia,he never needed it again after that,he says it was down to the good weather good food and just the lifestyle in general,he also used different herb remedies from over there.

ANXIOUS

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

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

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

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

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

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

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

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

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

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