Very worried

[mj30walls]

I have MS and now my son is presenting with symptoms very similar to mine. It is all too coincidental. I know there has not been any concrete linkage but I had Mono at 16, showed MS sx's at 32, dx'd at 33 on July 10, 2003. He had mono at 2and is showing sx's at 18, will be 19 in a few days. He has a neuro consult on July 10, 2013 with the same neuro. (Wouldn't trust any other neuro to make a determination).

So the eerie things are: 16 years between mono and sx's appearing and 10 years to the day of first neuro appointment. I have seen conflicting studies about the increased risk of developing MS with a first-degree family member having MS but I also know two sisters who both have MS and they live in our community.

He has numbness/tingling in both legs with weakness on the left side, heat/humidity sensitivity and extreme fatigue, as well as bladder urgency. I keep telling him it could be a deficiency in vit B or potassium, or even a pinched nerve. Blood work is in the normal range or just barely outside the parameters. But my gut tells me there is something going on.

My question is: has anyone else had a situation like this? Am I over-reacting to be this worried???

Thanks in advance to your input!

[Nay91400]

Re: Worried

I see you posted this in April...do you have any news?

[CaroleL]

Hi MJ,

Nobody can blame a mother for being worried but don't press the panic button.

Your son needs to see his doctor and follow up with a neurologist. Until you get some answers, panicking won't help. You're right to follow your gut and get him checked.

Ask your son to keep track of his symptoms, how often they occur, etc. That may help the doctor figure out what's going on.

Let us know what happens.

[Nay91400]

Ooops...sorry, I see now that you joined in April and this is a new post. I agree with the PP. Make sure he gets every test he needs, be his advocate. Maybe it is, maybe it isn't. My mom went through this with me and it turned out that it was (she has it too) BUT I am very lucky that they did discover it early. So there is the silver lining IF it even is MS.

[mj30walls]

Hi CaroleL,

We are documenting and have been fortunate that the NP he saw referred him to a neuro during his first visit. Thankfully, my neuro accepted him as a patient. He is like his mama, doesn't complain much, but two weeks ago he finally told me what was going on.

EMG is scheduled next week, so fingers crossed for good results. Thanks for the thoughts

[mj30walls]

Hi, Nay,

Thanks for your thoughts! My hubby thinks I have already dx'd him, but I am just trying to be realistic and optimistic at the same time, but I think it is coming out as pessimistic...lol

The great news is that there has been so much progress in treatments that if it is MS, the options and knowledge are way better than when I was dx'd.

Did you have the same sx's as your mom?

[Nay91400]

That is the right attitude. Honestly, no we didn't have the same symptoms. Because my MS was discovered by fluke. I had tingling feet, a year later I was in a minor car accident and a neck MRI discovered the first of 4 lesions. There ya go. I don't display many symptoms, even now. My mom started with optic neuritis when she was 18, was misdiagnosed and didn't receive her official MS diagnosis until she was about 52. (I was diagnosed at 26, I did also have what the doctor believed to be Mono when I was younger.) But you are absolutely right. If he has it, they are so much further along now with medications and closer to a cure every day (at least that is my hope. I raise money running races for the NMSS every year.) I really worry about passing it along to my future children as well so it definitely is comforting to know people are working hard to do something about this disease. Try your best not to jump the gun until all the results are in. I know its hard...BELIEVE me.

[mj30walls]

Thanks and I will do. and if I could run, I would run those MS races too. I would love to do the MUCKFEST. Take care

[Nay91400]

You take care, too. Please keep us posted on how he is doing. And it is very healing to raise money for the cause. The phrasing "I Run To Stop MS" has a double meaning for me...I run to stop it for everyone one day, and I run to hopefully stop if from progressing for me.

[KatieAgain]

This is an MS Mothers worst nightmare and only other MS Moms can understand.

I would have done exactly what you would have done...seriously. And I would tell Daddy it would be in his best interest not to stand between me and my baby! . Estrogen mixed with Mommy instincts is potentially lethal!

If my baby said my pinky toe feels all tingly...off to the neuro we go!

Some of this is in jest, but I sure understand where you are coming from and overwhelming concern.

Let's hope for the best...I too will keep my fingers crossed.

[mj30walls]

Thanks Katie! We have to have a sense of humor with MS or we would go CRAZY, or atleast I would. I tell people I drank my lunch when I get real stumbly and off balance in the hot afternoons, but in reality, I am the most sober drunk you'll ever meet.

We are not taking any chances and "daddy's finally come around to momma's way of thinking" so it has been more positive support for our young one now.

Hope all is well with you.