Just had a MS Diagnosis

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TheEqualizer
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Just had a MS Diagnosis

Post by TheEqualizer » Wed Mar 11, 2015 2:27 am

Hi all


My Son (who is 19) back in October (2014) had stroke like symptoms, one morning he woke up & couldn't move his left arm properly & was slightly dragging his left leg, he said that they felt weak.
So we took him to the Doctor, who sent him for an MRI, which he had & it showed that he had 2 Lesions on his brain, one on his brain stem.
By the time he had this MRI about a month after the initial symptoms, he had fully recovered, & has no after effects at all.

Anyway, the specialist that spotted the lesions, told us that my son had Transverse Myelitis, & that they wanted to do a further MRI with gadolinium, which would tell them if the lesions were made at a different time or happened at once.

So the second MRI scan took place, & we went to see the specialist yesterday for the results.

She has told us that our son, our little baby, (19 year old) had another 2 lesions on his brain, that had appeared since the last MRI 3 months ago, and that he has MS.

She has referred him to a specialist at the Royal London Hospital, who specialises in MS in the Young?

Anyhow, I'm still taking it all in, & I guess am just looking for support and advice.

Regards & Thanks

E

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NHE
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Re: Just had a MS Diagnosis

Post by NHE » Wed Mar 11, 2015 9:54 pm

Welcome to ThisIsMS. I'm sorry to hear about your son's diagnosis. I was in my mid 20's when I had my first symptoms. There has been much discussion here on things one with MS can do to help slow progression. I would encourage you to look through the Diet, Natural Approach and Exercise forums.

Youarethecure
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Re: Just had a MS Diagnosis

Post by Youarethecure » Fri Mar 13, 2015 9:32 pm

I had my first issue at 19 years old. I was not diagnosed until last year (25 years old) though. I am male as well.

How is he handling it, if you don't mind me asking?

It is very scary at first but it is not the end of the world. Life goes on. There are many things he can do to hopefully slow down the progression like mentioned above. Diet, exercise, medication, nutrition and lifestyle changes can all help. I changed my entire life around, in many really good ways.

The more you learn about MS the less you will be afraid of it. It can be managed very well, and at his young age he will see a cure or a halt of the disease sooner than later.... in my opinion at least.

My brain has a lot more than 4 lesions and I am doing very well. Aside from when I have a flair up I feel better than I ever have in my life. I work in restaurants cooking 50+ hours a week and go to the gym 5 days a week. No one ever believes me when I say I have MS. Honestly, even some days I almost even cant believe it myself.

I hope the best for you and your son,

Chris

TheEqualizer
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Re: Just had a MS Diagnosis

Post by TheEqualizer » Thu Mar 19, 2015 5:16 am

Hey Chris

Thanks for your reply, Its good to be able to speak to someone of a similar age as my son.

He is probably handling it better than us tbh, We have had a brief chat, but we also a little scared as to how to broach the subject with him.
He is very matter of fact, I feel normal now, so lets not worry about it, kind of attitude.

I am worried about the big stuff like, who is gonna employ a young lad with this disease, knowing that they are gonna have to pay him to be off sick at times?

How will this affect Life insurance that he may want in the future, Travel insurance, a Mortgage?!

But I don't want to worry him about that stuff yet, so am keeping it all low key at the mo while we wait for an appointment to see the MS Specialist at the Royal London Hospital.

Also after watching the youtube video that it was suggested I watch via PM on the forum, I want to make sure its not a Vitamin B12 Defficiency as well.

Loads of questions, & not many answers.

Regards

Simon

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Re: Just had a MS Diagnosis

Post by Youarethecure » Fri Mar 20, 2015 9:23 am

You are getting way too ahead of yourself here. lol

First, who is to say this disease will ever affect him enough to be a bother relating to work? I have worked through all my relapses and symptoms no problem. I have worked 54 hours a week managing a restaurant through all my flare ups. Days I couldn't see straight or think straight, days I couldn't feel my legs, days I was so fatigued, etc. No one knows or can predict his prognosis. So who is to say he is not only going to have mild symptoms? At least for a very long time. He could go into remission for 20+ years. We never know.

I don't see how it will affect getting a mortgage. They don't even need to know his medical history if that even plays a factor.

Now, life insurance I am under the impression we are kinda screwed there..... but I don't know.

There is a lot he can do against MS. At the very least, this gives us piece of mind that we are doing everything possible to slow it down.

if it would help, I would be more than willing to talk to him about this. I can more than relate to him in his situation.

TheEqualizer
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Re: Just had a MS Diagnosis

Post by TheEqualizer » Fri Mar 20, 2015 1:35 pm

Hi Chris

I know I'm getting ahead of myself, but that's how my mind works. I tend to overthink most things. lol

With regards to employment, its not that he may be able to work through symptoms.
Its more the fact that you really have to be honest with an employer, when going for job interviews, CVs or Job application forms, if asked, do you suffer from any illness,? and if there is you & 10 others applying for a job, an employer is going to employ the person whom they believe will not just be best for the job, but also an person that may not be off ill too much, or have the chance of being off ill on a regular basis.

Now we all know that anybody can be ill, but, I'm just thinking again that it makes it just that bit harder to convince any prospective employer to take you on.
Its different if you contract the illness whilst employed?
As sad as it may sound, a lot of small business employers wont take on, or cant afford to take on anyone who may have to have excessive amounts of time off sick. That includes Young women who may get pregnant in the next 5 years as well as people in my yours & my sons situation.

Regards

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Re: Just had a MS Diagnosis

Post by ElliotB » Fri Mar 20, 2015 3:09 pm

Perhaps self employment is the answer.

"Now, life insurance I am under the impression we are kinda screwed there"


Not sure if that is true or not. I just applied for life insurance and will know in a week or two. I will report back once I find out.

TheEqualizer
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Re: Just had a MS Diagnosis

Post by TheEqualizer » Sat Mar 21, 2015 3:14 am

Although I am a newbie to this forum & haven't had a chance to search around much.

This place could be an invaluable source/resource for people with MS to find out the cheapest and or best place to get life insurance, or a mortgage, or anything that is made that little bit harder in your situation.

Let us know how you get on Elliot. Wish you all the best.

Youarethecure
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Re: Just had a MS Diagnosis

Post by Youarethecure » Sun Mar 22, 2015 6:07 pm

Yeah, let us know Elliot. I am very interested to know. I have never really looked into it too much so I don't know if what i said is true or not.

Self employment seems like a good choice for most of us. I am looking to take that route eventually (or preferably asap lol).

OP, This website is an invaluable resource for people new to MS. I can't explain how much this website helped me and still helps me in my battle with MS.

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Re: Just had a MS Diagnosis

Post by Kronk » Sun Mar 29, 2015 8:37 am

Mortgage wasn't an issue, Life Insurance is possible but expensive, unfortunately... but honestly at his age and life situation who cares?

When/If he gets married and has kids in the future it may be a larger concern but I would keep your focus short term. Every 8 years there tends to be a major breakthrough so keep some hope. I recommend you get significant insurance for yourself and your husband and make him the beneficiary. I have a friend who sells plans and he said that an investment in life insurance is a guaranteed lottery win for your kids. I have a wife and 2 young kids so no life insurance was a blow, knowing that if I died my family may struggle. The real scary thing is that I HAD life insurance though a plan at my work, but they revoked it upon my diagnosis. They stated that since i was in a higher risk category I didn't "fit" the plan. MS is not considered life threatening, just puts me in a high risk category, if i had cancer they couldn't revoke it. Very frustrating. After my diagnosis we got a large independent insurance plan for my wife. Medical insurance is the bigger question for many of us. Luckily i live in Canada where we have universal health care so that is not a big issue.

Some workplaces actually look for disabilities to show they are equal opportunity but that I wouldn't even consider that possibility at this point. When i was diagnosed I very much thought as you are, in the future. But realize that the future is very very uncertain, MS or not. We have a higher chance of disability with our diagnosis but its not guaranteed. I know people who have had MS for 20+ years with NO DISABILITY. He has caught it early which makes his prognosis much better.

I follow the linked regimen and have had my relapse rate drop significantly http://www.thisisms.com/forum/post218877.html#p218877 when diagnosed i had 9 lesions on brain and spine and suffered multiple relapses in the first year. I have no lasting effects from any of them. I would recommend you encourage him to get on a healthy eating/ living plan. It does wonders for the mind to get some sense control over your fate. I keep my MS a secret from all but my closest friends and family, whenever I tell someone they are shocked.

Best of luck to you and your son. Don't let MS take over your mind. I usually forget I even have MS until I take my daily needle.

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Lucky2be
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Re: Just had a MS Diagnosis

Post by Lucky2be » Mon Mar 30, 2015 8:26 am

TheEqualizer wrote:Its more the fact that you really have to be honest with an employer, when going for job interviews, CVs or Job application forms, if asked, do you suffer from any illness,? and if there is you & 10 others applying for a job, an employer is going to employ the person whom they believe will not just be best for the job, but also an person that may not be off ill too much, or have the chance of being off ill on a regular basis.
You do not have to reveal your diagnosis to any employer potential or current. The national multiple sclerosis society has some great resources about this. It is absolutely illegal (in US) for them to ask you about your medical status. If you need an accommodation, that's a little bit different, but you still don't have to reveal your diagnosis. You can ask for reasonable accommodations and they cannot discriminate against you. It is up to the employer what if they deem as reasonable. Extra breaks throughout the day, temperature control, access to the restroom, these are all very reasonable. I would strongly suggest that you go to national multiple sclerosis society's website and read about their information for parents of children diagnosed and for patients. It helped me a lot.
Lucky to be here! Dx 6/2014 at 29. Tecfidera since 10/2014.

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Re: Just had a MS Diagnosis

Post by NLGal » Fri Apr 10, 2015 3:37 pm

Life insurance: I qualified for life insurance to cover my mortgage in 2007 at 39 years old, diagnosed with RRMS and on a trial drug in the placebo testing stage, and at a surprisingly good rate. Full disclosure there. No ambiguous questions to trip you up, unlike mortgage insurance (avoid if possible - it's nothing but a money-grab that does't pay as promised).

In 2006 I was flagged to complete a statement of health from our company health provider. I was denied additional life insurance to match my salary because I was "going to die before everyone else" because I had MS, according to one of the underwriter's nurses. Wait. I'm sorry. Did you actually say that out loud? Really?! Well you might get run over by a truck when you leave work. Who's dying first now? And yes, I did say that out loud to her. Needless to say there was a very unpleasant exchange between me and said nurse after that comment.

Upshot? You're not necessarily denied insurance automatically. It depends upon the underwriter and their knowledge of the diagnosis. The main thing when completing an application is to absolutely, and unequivocally, honest.

Good luck and good health to your son.

Karen
“We, the unwilling, led by the unknowing, are doing the impossible for the ungrateful. We have done so much, for so long, with so little, we are now qualified to do anything with nothing.” ` Konstantin Jireček

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