Anybody have Multiple sclerosis?

[Memoo]

I was wondering if you wouldn't mind answering a few questions for a friend of mine.

She has a list of symptoms. All blood have been done and no problem there. The GP thinks the symptoms are definitely neurological, possibly MS. Also my friends father has Parkinson's so that increases the chances of her having MS.

She was wondering about early MS symptoms, particularly muscles twitches and pins and needles in her nose and lips.

GP has referred her to a neurologist.

My husband has MS, so perhaps I can help?

MS varies for each sufferer and there are no fixed rules. My husband discovered he had it in his late thirties, when he went numb down one side of his body out of the blue. He had not had any symptoms previous to this that we were aware of. We were very lucky to get a quick diagnosis following an A&E admission and a lumbar puncture/MRI scan. However, initially this was diagnosed as CIS (clinically isolated syndrome) and only confirmed as MS, when he had a further relapse a few months later. It can take a long time to get a diagnosis.

The good news is that there are some very powerful 'disease modifying' drugs available, which delay the progression of the condition.

The MS Society website is a very helpful resource.

I know my friend has spasms in her legs and hands as well as pins and needles in her fingers, nose and lips. Just recently the left side of her face has started feeling numb for a few hours at a time.

I guess she really wants to know how people live with Ms and what level of disability it causes. Is your dh still able to work and do all the things he use to do?

I have ms (for last 20 years) and am lucky that the symptoms are manageable without meds in my case .The criteria for diagnosis used to be lumbar puncture and blood test and mri, but they didnt used to do this unless you had two episodes.
Things might be idfferent now but get to the docs first so they can exclude other options. Good luck

Yes and Yes! DH still works full time in a demanding job and does all the things he used to do. We are very lucky, but things have had to change. He has to pace himself get used to the fact that some days are better than others. He can get very tired. He looks after himself, keeps active and eats well - is trying to cut back on coffee and only now drinks the occasional glass of wine.

We now work our schedule around how he feels and if he is having a bad day, then we change our plans. Work have to make 'reasonable adjustment' by law and you have very good protection from the Equality Act 2010 (replacing the Disability Discrimination Act (DDA)).

He has relapse/remitting MS, and his last relapse was this time last year. It took a while to get over but things are OK at the moment. He does not have the strength that he used to, but we work around that.

It might not be the life that we had planned, we have had to make changes and get used to the uncertainty that MS brings, but we make the most of each day and we are very positive about our situation.

He injects rebif three times a week, it took some getting used to, but now it is a part of our life. This is a disease modifying drug which reduces the number of relapses you have.

It has been a roller coaster, but the thing to remember that each person's MS is different, there are no set rules. There are lots of effective drugs and therapies available depending on the type of MS and how aggressive it is.

Best wishes to your friend and tell her to try and remain as positive as possible, it really does make a difference.

celeriac, your post is so uplifting. I'm really glad that your dh remains well despite the MS.

canistartagainplease, it's so reassuring to hear you are so well you don't need meds.

I think when MS is mentioned in conjures up an image of somebody who is very physically disabled and the thought of being like that is, I imagine, very frightening. I keep thinking of the lady with MS who was on the news a while ago who was going to court to seek clarification about wether her dh would be prosecuted if he assisted her suicide. Scary stuff.

I really appreciate your replies. Very reassuring. .

Hi Memoo, my DH has MS. His mostly manifests as tingles and numbness in his body (various places - it moves around) and lack of feeling in his fingertips. His balance is a bit off sometimes too.

He was diagnosed 6/7 years ago after having a serious attack of paralysis down one side - they thought he'd had a stroke.

Generally he gets on okay, uses a stick from time to time if his balance is a bit wobbly.

Please try not to worry, although I understand that this is easier said than done!! MS is a condition that you have to work with, you can't fight against it or you can make yourself more unwell. Once you have come to an acceptance of this and learn to make allowances accordingly then life is far easier.

Symptoms can come and go and you can have long periods of time where you are symptom free. Obviously, some people are unfortunately more severely affected.

One of the first questions I asked was, would MS shorten my DH's life and was told, No it wouldn't. He might have a different life, but it is life nonetheless and I am happy with that. We will work round any obstacles as we come across them :)