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Marc In Asia

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Hi ALL,

This is my first post here and my first on an ALS forum.

Ok will start with a quick family run down.

* Mum mid 50's diagnosed with progressive MS in her early 30's. Still hanging in there now but is in the very later stages of this cruel disease. Bed ridden round the clock care, and for a woman i grew up with as a non stop chatter box is sadly only able to blink as form of communication.

* Dad - diagnosed with MND in his mid 50's. Passed away within 2 years.

* Sister - 37 yrs diagnosed with MS in the last 18mths. Reacting well to treatment due to technological advances.

So as you can see we have been hit with some bad luck in the neurological department. Seeing loved ones go through this is just terrible.

We are at a loss to the connection right now, is it bad luck or is there more to it ?

Reportedly there is no Familial connection to ALS on my fathers side. Although my father could only see the possibility of a tick connection between my mother and sister's MS who were both into horses in the UK growing up ( note: the tick borne disease being linked to MS cases). Again no more connection to familial MS in the family on both sides.

Now to me.

Im 37 years old, into normal stuff dirt biking etc..... Over the last 18 months I have had two operations.
1. to repair an AC separation in my shoulder after a fall on a motocross track. Tight rope surgery. Side effects slight loss of feeling in top shoulder due to nerve damage. otherwise all good.
2. A few months after After complaining of weakness in my left side and overall twitching an MRI showed i had severe compression on my spinal chord due to worn discs on C5/C6 which resulted in urgent(ish) surgery to install an implant. ( due to wear and tear)

For the later (2) the op was Dec 15. However im still get occasional twitches and the feeling of weakness in my left arm and and left leg.

Im actually due a re visit with my spine neuro tomorrow and having brought up the family neuro links previously I wish to raise them again with him. I am requesting an EEG too as I want to know a bit more about the weakness feeling and of course the twitches and to what extent they are linked (if at all).

As i'm sure you can imagine , having seen my family go through all of this i am HIGHLY in tune with the warning signs, which unfortunately have turned me into a bit of a hypochondriac of my bodily functions.

Im not here to get an online diagnosis. I have seen plenty of worried people on this forum who look to be getting clarification on what appears to be stress more than anything else, but on the flip side you see some peoples cases where they bounce around specialists until finally getting the bad news. To be honest its really messes with your mindset and is a constant weight as im sure some of you out there can relate.

My main question would be does anyone have any contacts around the world where they offer some more input into familial neuro relationships ?

Im looking at contacting a US based Dr called Timothy Coetzee who has a PHD in microbiology and immunology. He more so dedicates his time to MS but is looking at the links from what I can see.

Is there anyone out there with a similar story to mine ?

thanks in advance ,
Marc
 

affected

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Hi Marc
so sorry about all your loss

I cannot see how there can be any connection between your father having ALS and your mother and sister having MS. I see a connection between your mum and sister of course.

But with no genetics shared between your mum and dad (I presume) there is no connection.

Sorry I can't answer you with any contacts.

I presume you are going to ask for an EMG rather than EEG?
 

Marc In Asia

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Hi Tillie,

Yes sorry my mistake I meant EMG.

thanks
 

Nikki J

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You have no evidence to support FALS. If you still have questions about familial MS after your visit with the doctor you might ask in an MS group. I don't think the genetics of MS are currently as clearcut as those of FALS but the world of genetics is expanding exponentially so there may be some things on the horizon. Your sister's doctor has presumably discussed this with her too.

If we could have chosen familial MS over FALS I would have been overjoyed. MS is no picnic but as you say there have been great advances in treatment for MS
 

Marc In Asia

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Hi Nikki,

It wasn't that I was looking at the link between my Mum and Dad but more so what possible link there could be that my sister picked up the MS when both parents suffer from Neurological disorders. There is studies going on researching possible links, its that side of it that I want more clarity on and also to determine if anyone else in this forum has any input between the MS / ALS and familial link if at all.

thanks
Marc
 

affected

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I don't believe there has been shown to be any genetic link between ALS and MS. While they are both neurological, they are very different diseases.

The research does say that having a parent with MS puts you at greater risk of developing MS. That is the connection, rather than your father having ALS.

Again I'm sorry you have so much going on in your immediate family.
 
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