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Multiple Sclerosis Community
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Avatar universal

How was MS changed your life?

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?
27 Responses
Avatar universal
Anything else anyone can say to educate me better about this condition as although I could ask my dad I feel like someone else could tell me more. I know it's being paranoid but I get bad cramps and weird feelings in my leg,is this a sign of MS?
645800 tn?1466864555
Like you my Dad had MS as well as me and a few other members of my family, but most family members don't have MS. I think the current research is that having someone in your immediate family with MS only raises the chances by something like 3%. So it isn't a real strong link to the increase of risk.

As for first signs of MS, that is difficult to say. For just about everyone the first signs vary quite a bit. Probably almost everyone had a different first sign. Some it may be a vision type problem, others a cognitive problem (like me), and other a problem with on of their legs or arms. I could probably spend a week typing and still not hit every type of first sign. This is because every case of MS is individual to the person due to the very nature of the MS. It is just a matter of where the damage to the CNS occurs.

As for preventing the onset since no one know what the cause for it is that is anybodies guess. You could live a very healthy life style and still develop MS at some point or not. But the healthier life style you live would make it less likely that you would develop many other health problems so that is a good option for everyone.

As for slowing the progression that again varies from person to person mostly dependent on what type of MS a person has and what kind of medication they tolerate.

If you want to learn more about MS we have many health pages on the subject. You can find them on the right side of this forum.

Dennis
Avatar universal
Oh right that's odd because when my mum was pregnant with me they told her the percentage of me getting it was around 20-25%. How old were you when you were diagnosed with MS?
Avatar universal
Also are you in a wheelchair?
645800 tn?1466864555
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
Avatar universal
Thank you for speaking with me,it's been interesting hearing what you've had to say :)
5887915 tn?1383382380
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.
Avatar universal
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? :)
5887915 tn?1383382380
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.
987762 tn?1331031553
COMMUNITY LEADER
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      
5112396 tn?1378021583
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.
2015036 tn?1333001388
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.
1831849 tn?1383231992
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
667078 tn?1316004535
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
Avatar universal
Happy belated Birthday :) what's DIV?. Glad to know you're not doing badly :)
Avatar universal
Thanks for your response :)
Avatar universal
Thank you for your help :)
Avatar universal
Great to hear it has not held you back,thanks for your response :)
Avatar universal
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!

1831849 tn?1383231992
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
Avatar universal
Haha oh right thanks, I didn't know that :P
5538989 tn?1514402053
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!

Avatar universal
Thank you. How old were you when you were diagnosed with it and how old are you now?
667078 tn?1316004535
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
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