How was MS changed your life?

[kitty094]

My dad has MS and I have about a 25% chance of getting it. Are they any first signs of it? I asked my father and he said his eyes began to deteriorate and that was the first thing that happened to him but is there anything else? Also If you're diagnosed with it I've been told there and ways to make sure your condition doesn't advance so quickly such as lack or stress,anything else?

[kitty094]

Not so long ago then. wow that's really lovely to hear! Yeah in all honesty hearing everyone's different stories has been a real eye opener for me and I've learnt to worry less about it :)

[cubbiesfan918]

Hi Kitty -

I was 32 when I was diagnosed April 1 2013. I turned 33 in July. I had numbness prior to my Dx that I attributed to other things. The turning point was getting Optic Neuritis when I was 8 weeks pregnant. It was a real eye opener.

I can't say I haven't thought of the possibilities of passing it on to my daughter. But worrying about it would never change it, so I am just enjoying every day with her. She's my miracle :)

Hope life is treating you well, stop worrying about the unknown :)

Lizzie

[kitty094]

It's nice that it has been put into a postive thing and generally made you have a lust for life!

[HVAC]

I was thinking more about how MS has changed my life. Because of MS I started riding horses again. I always wanted to ride so I put an ad on Craigslist. I found a nice lady who gave me riding lessons. Now I can go out and ride. I have all new friends at the barn. I trained a Service Dog to help with my eye sight problems. I am training my second. I am on the State Board for Service Dogs. I have met lots of new people through dog training. I started writing because of the MS. I volunteer with the National MS Society. My husband and i look forward to the Bike MS ride every year. He rides and I take pictures. We have lots of new friends from the MS Society. I have all kinds of new friends from this forum.

I would say MS has been a good thing in my life.

Alex

[kitty094]

Thank you. How old were you when you were diagnosed with it and how old are you now?

[cubbiesfan918]

Hi -

I am the only person ever in my family with MS. I have 1 cousin in my generation with Rheumatoid Arthritis.  I am going to take my usual MS approach and tell you not to worry about something that may never become :)  There is a tremendous amount of power in positivity.

I hope you are doing well!

[kitty094]

Haha oh right thanks, I didn't know that :P

[kwarendorf]

A procedural tip -

You can respond to multiple posts in a single post by saying something like "Thanks everyone."  No need for individual replies :-)

Kyle

[SarahL2491]

Even the UK test subjects only came up at 9% and somewhere I read it was less than 2% but can't find that now, will keep looking.

When someone tells you 25%, ask to see the source!

[kitty094]

Great to hear it has not held you back,thanks for your response :)

[kitty094]

Thank you for your help :)

[kitty094]

Thanks for your response :)

[kitty094]

Happy belated Birthday :) what's DIV?. Glad to know you're not doing badly :)

[HVAC]

People are statistics. Each one of us is different. MS runs differently in each of us. I have had MS for over 40 years and am not on a drug to slow the progression. I also have cancer and am not living that statistic either.

If you saw me right now you would think I am the picture of health. I used to get hung up on statistics. I have an 87% chance of breast cancer which is high. I may never get breast cancer. I had a doctor look at me and say you will get breast cancer. I went to a hereditary breast specialist. She told me not to worry about it. If it happens she is there for me. She told me to live my life.

If you get MS there are lots of new treatments coming. Chances are you won't get MS at all. Life is good. Take care of your over all health because that is a good thing to do. You are not a statistic,

Alex

[kwarendorf]

Hi Kitty -

I want to reinforce what others have said. Having an immediate family member with MS does not mean you have a 20-25% chance of developing the disease. I've seen the number as low as  3% increased chance over someone with no family history.

As has also been said, there are no two identical cases of MS. We all have our very own version :-) I was diagnosed @ 51, and apparently have had MS for more than 20 years. Now that I'm almost 54 I'm doing OK :-) Drugs have kept me relapse free since my diagnosis and I lead a remarkable normal life :-)

Kyle

[maxthecat43]

For a long time, MS barely impacted my life at all.  In fact, I had no idea I was sick.  For over 15 years, whenever I had some strange symptom, I assumed it was something else.  Sure I had fatigue, and neurological symptoms- but I didn't know what neurological symptoms were at the time.  I usually thought I had a pinched nerve in my back or something like that.  

Now, I am disabled- but I'm glad I was able to think I was fairly healthy for so long.

[immisceo]

I second JJ. You seem to have a lot of misinformation stored up that's causing you unnecessary worry. I'm choosing not to add fuel to the fire by answering your question directly. If you have these types of questions, I'd prefer to direct you to the websites of the MS Society who specialise, in part, in informing the public at large about the disease itself in very basic terms.

[supermum_ms]

Hi and welcome,

Before you even start to get concerned about MS, you need to focus on the research facts, despite your mother being told you had a 20-25% chance of developing MS, that statistic is completely at odds with current MS research. Think of it this way, even though you have a first relation with MS, you have a greater than 95% chance of 'not' being diagnosed with MS.

In MS, no two people experience the exact same combination of sx's, so even if you read 1000 MS stories, its not really going to give you any greater insight to what MS could potentially mean for anyone dx with MS today. There are too many variables, eg age of dx, untreated vs treated, country you grew up in, country health system, gender, number of years with MS, sx's list, brain vs brain and spinal cord lesions etc etc that effect each persons story, which basically means their MS story is unique to them.

The most common sx's leading up to a dx of MS are visual sx's, optic neuritis, diplopia, nystagmus etc its somewhere around 75% but that isn't necessarily their first MS sx, just the sx that lead up to their dx. Most people dx with MS in todays world of disease modifying drugs, have lead and still lead relatively normal lives, unlike the time pre disease modifying drugs, young pwMS today are less likely to need wheelchairs and have those high disability rates.

Please do not become worried about developing MS, because your dad has MS does not really increase your odds, its very common for family members to start to worry but it will do you no good to worry unnecessarily about something you are more than likely, never to actually have.

Cheers.............JJ      

[karryon55]

I can try & answer some of your questions the best I can. First one is easy. I just turned 43....lol I did have to think about that as I've only just had my birthday.

I am not able to have children. My primary autoimmune conditions are Rheumatoid Arthritis, Secondary Raynaud's Phenomena, Asthma & DIV.  I have many conditions that are not autoimmune as well.

I have had so many odd symptoms since my 20's but I can say things that were clearly MS are loss of feeling to left pinky which spread to the hand & arm. Sensory symptoms which I assumed were caused by having arthritis. MS hug. Fatigue. Weakness in right leg. Ataxia. Speech difficulties. Tinnitus & some hearing loss. Vertigo & Nausea. Balance & walking problems. Urinary frequency, urgency, retention & UTI's. Heat intolerance. Cognitive decline. I can't think of the others right now but I think you get my drift. Many things like the MS hug I haven't had for a long time (thank goodness) & others are with me always.

I think I am doing fairly good since my dx. It is a bit of a roller coaster of emotions at times. I can be happy & joking one minute & feeling like crying the next. But hey I will get over that.

I hope this helps.

Take care.

Karry.

[kitty094]

I hope you don't mind me asking but How old are you? Do you have children and what other autoimmune conditions do you have? :). What sort of signs did you have for the last 15-20 years. Also as you were diagnosed 8 weeks ago,how are you feeling? :)

[karryon55]

I have MS & have 2 blood relatives with it also....these are not immediate family so it doesn't matter anyway. The genetic risks are very low as Dennis has said to you even in twins. I wouldn't worry too much about the genetic connection.

There are studies going on to find out the exact cause of MS, one in Australia is looking at vitamin D, but so far it is known that there are multiple "risks" that seem to play a role in people getting MS.

One of the risks is where you grew up & lived before & at puberty. So geographically I think the highest risk areas are Europe, North US, South Canada. I believe that is where the study into the vitamin d comes into play because it is in the colder climates that have the higher prevalence.

Another risk factor is Smoking. So obviously abstain from smoking. Take vitamin d if you are deficient. Eat a healthy well balanced diet.

The other risk factors I know of is having other autoimmune conditions, Caucasians are at higher risk & of course some sort of virus or infection is thought to be a possible cause. All of these things I have mentioned though are not certainties & it's is often many things playing a role in developing MS.

Stress will not make the progression of MS any worse but it can make your existing problems play up.

The first presenting symptoms are different for most people but Optic Neuritis can often be one of the more obvious connections that could send you to a neurologist. However not everyone with ON will end up getting MS. I was diagnosed 8 weeks ago but have had symptoms for 15 to 20 years. I also have multiple autoimmune conditions already.

I hope this helps you. As I mentioned before you can really only make good life style choices now & enjoy your life. I wouldn't be thinking about MS unless you start to get neurological problems that suggest MS.

Take care......Karry.

[kitty094]

Thank you for speaking with me,it's been interesting hearing what you've had to say :)

[Sailorsong]

I developed MS when I was around 39, but did not get my DX until just a couple of years ago when I was 61.

A lot has changed in just the last 10 years or so with MS. With the current drugs for treatment most people with MS live fairly normal lives and don't end up in a wheel chair. This doesn't mean the life is easy by any means, just that it isn't as hard to live as it once was.

I use just a cane for walking and that is mostly due to balance problems. I also have a lot of memory problems which mean I need to constantly keep list of things I need to do or get so that I can remember them. I've also had to give up some activities that I loved, like hiking and sailing due to weakness in legs and arms. But your learn to enjoy other things that are still possible for you.

Dennis

[kitty094]

Also are you in a wheelchair?