Effect of Family History on Likelihood of MS in 40's

[MinecraftMom176]

Hi!  This will be quite long unfortunately so bear with me.  I am 46.  Possibly peri-menopausal but I'm not entirely convinced quite frankly.

Family history is that my mother has MS.. symptomatic probably starting as early as 1962.  DEFINITELY symptomatic after my birth in 1969. In and out of a wheelchair throughout the 1970's.  Formerly diagnosed in 1981 I believe.

My FATHER'S mother (grandmother) ALSO had MS.  Using a cane at my parent's wedding in 1965.. bedridden by my birth in 1969.  Spent the rest of her life, until 1994, in a wheelchair or in bed.  Died of heart attack in her sleep at age 80.

In my late teen's, early 20's, I was having episodes of what my mother and I call "the shift".  I'd be driving and I'd say turn my head to check traffic for a merge to my left and suddenly the whole world picture would "shift" to the right.  Just a quick thing.. wasn't a spin or a vertigo, just a "shift".  I'd also get "the drop".  Where you put your foot down and it feels like, although your foot is on solid ground, that that ground dropped a foot or two below where you first felt it was.  

I did have a child at 18.  Large child, tough childbirth, naturally.  Gave up child for adoption.  Long story short, very stressful experience.  I'd say these episodes came a year or so after that.. maybe two years.  Went to a neuro, physical test and MRI both "inconclusive" for MS.  Said I needed to see an ENT who did some ear test which was the "definitive" for MS (this was around 1989).

Flash forward to about a year ago.  Began having balance issues.  First occurrence was after standing and talking a long time.  Passed out.  A month or so later, I was at the movies with my daughter and a friend and after I got out, got to the car I could barely balance.  Not sure how I drove home frankly.  Just felt "off".. foggy, generally off balance, thoroughly exhausted.  Ended up resting the entirety of the remainder of the day and night but it passed.  In May of this year I started having episodes where all of a sudden I was off balance.  Just didn't feel right.  Like you're going to pass out but don't.  Extreme weakness.  Trouble walking.. again that kinda "drop" feeling but not as extreme.   Numerous episodes throughout May and June.  Tapered down in July.  

Had a VERY stressful job that made me miserable.  Also turns out I had kidney stones at the time.  Which I did pass one, not very large, and I have two very small ones remaining I believe (unless I passed those as well).

For the past two months have serious urinary issues.  Constant pressure.. have been times I feel like I have to go urgently but cannot go.. at all.  When I do go, it's normally normal.  Like heavy stream, large volume (drinking tons of water to prevent stone recurrence).  Lot of discomfort in the urethra.  What I also have is a lot of back pain.  First in lower back.. now in the middle.  I also have a lot of arm fatigue.  Like I colored my hair roots yesterday.  Just doing that my arm was incredibly achy.  No coordination issue but by the time I was done, my right arm (which was applying the dye) felt like it had been beat up with a bat.  

Even now, as I type this, my left arm feels like that.  I'm typing fast and whatnot and right arm is fine.. left though is killing me.  

I find I fatigue very easily.  I also have symptoms where I can be sitting.. and I suddenly realize that I'm bobbing.  Like my head is bobbing up and down, very slight but it's noticeable.  It'll take me a while before I can focus and re-gain control.

I also notice I don't type as well.  My fingers don't find the right keys like they did.  And forget texting.. That takes a lot of focus and precision to accomplish.  I also notice my vision is very sensitive.  Like if I look at anything too long?  I'm off balance.  Happened just now, I was focused on this and I felt my body wanting to shift to the right.  So I had to look away and refocus.. drink some water and try again.  

I definitely fear MS?  It concerns me that I have it on both sides of the female family tree, and close proximity gene pool wise.  I know mid 40's may be late but I suspect that I may have also "had" it, just got lucky and went a long time between relapses.... and I have, admittedly, had the most stressful period of my life ever in the last 4 years (it's been a nightmare.. LOTS of stress, LOTS of issues, LOTS of not good stuff that I'm sure if stress if a factor?  I'm the motherlode for it).  

Anyway, just seeing if any of this rings bells or rings true with anyone... Just opening the door to conversation and feedback.  Thanks!

[MinecraftMom176]

Makes sense.. I've been looking a lot at spinal type things as well.  Cervical compression was one thing.  Tmj is another route.  ENT I saw recently said I definitely have that.  More on right than left..  But it's left ear that's bothering me right now.  The synthesizer effect is highly annoying..  

[supermum_ms]

The thumb, index finger and middle finger are innervated by the median nerve, which is the nerve that is most commonly affected eg carpal tunnel syndrome but because what you are experiencing is symmetrical, bilateral, travels, and you do actually have neck pain, i would be thinking it's actually more commonly suggestive of nerve compression, spinal stenosis (narrowing), degenerative disc, slipped disc etc

Structural spinal issues are definitely worth getting looked into because some can  cause ear fullness, dizziness etc depending on the location of the structural issue. Keep in mind when googling symptoms, MS is a condition of the central nervous system so MS will typically come up a lot, but condition that affect the peripheral nervous system are much more common than MS is.

Peripheral nervous symptom issues do cause some very similar symptoms which can inadvertently be misinterpreted from google searches, PNS  symptom pattern is commonly bilateral, symmetrical, travels etc but whilst it's not impossible, generally it's an uncommon symptom pattern when MS is the cause.

Cheers........JJ  

[MinecraftMom176]

Just an update..  In the last week or so have developed fullness in my ears.. Mostly left, sometimes both.  Don't think it's been just right yet.  Weird hearing..no loss, if anything hyperaware but certain sounds have the quality like when you snap a rubber bang and it makes that twaaaa.nnggg sound.  Not numbness but a tingling that travels.  Predominantly on left side.. Face, fingers, forearm...just the index and middle finger.  Only index finger on.right hand and only at same time as the left. Im not congested.  Do have neck pain, on the side, pretty regularly.. Cannot pop ear no matter what.  Blowing my nose just makes it block more.  With the tingling and fullness.. Guess what keeps coming up...I wouldn't be freaked out if I did have it.  I've watched my mom love fantastic for 46 years with it,  would just like to know if that's what it is so I can manage it.  Recent thyroid, mahnesium,.adrenal, and hormone testing all normal.

[supermum_ms]

"I tend to disagree with the first response that it's NOT common.. I think it's much more common than is documented yet and I know quite a few mother/daughter situations."

Just thought I should probably point out the information provided on hereditary percentage, was actually from the 'Multiple Sclerosis Society of America' which is a very reliable MS information resource.

Keep in mind if there's around 400,000 dx MSers in the US, the MSSA 3-4% would be up to 388,000 dx MSers without anyone else in their family with MS and the remaining MSers with the genetic association, fortunately that means the odds of being the only person dx with MS in the family being the most common situation....

Cheers.........JJ  

[MinecraftMom176]

Hi Dennis and thank you!  "Back in the day" I actually had gone to a neuro. He did a little physical test and I did an MRI through him.  After those results, the neuro referred me to an ENT.  I already have an inner ear problem (always have, since childhood.. but has rarely been triggered).

Anyway, since 2011, I have taken a ferry boat every other weekend.  Pop some Dramamine and I'm fine typically.  I've been on some pretty rough trips on it and not been dizzy.  Nauseaus really bad one trip but not off-balance.  The off-balance thing I've only had these two periods.. back in my early 20's.. now again in my mid 40's.  I haven't done the ENT thing because I hate vomiting more than anything else, I've learned there's a phobia for it lol and I probably fit.. so I dont' want to deliberately subject myself to something that is likely going to create that issue.  

Anyway, what's happened recently comes and goes.  Since May I would say it happened maybe 75% of days, every day for a month or two.  There are times I feel it coming on and I now know what it feels like?  So I can kinda pre-empt it?  But there is NO consistency to it occurring.  It's not like THIS movement causes it which would counterindicate BPPV.  That's really just a blank bucket they throw anyone in who  has otherwise non-specific or identifiable dizziness, lightheadedness, vertigo into.  I've tried to replicate it in every which way.. Nope.. It just happens when it happens.  

I would say stress or anxiety is more likely to trigger it than position.  Which, I would say like my mom would concur with.  And she would agree it's not a "spin" or a dizzy.. it's a shift.. it's a left to right or up and down disorientation.  You can manage it through I guess they call it biofeedback.. basically mind over matter.  I've noticed a head bopping lately as well.. and that takes a LOT of focus to make stop.  

Anyway, it's a weird thing.. could be lots of things.. Just because of the family history (which I thought unusual and I tend to disagree with the first response that it's NOT common.. I think it's much more common than is documented yet and I know quite a few mother/daughter situations.  I used to work with a gentleman and his wife and he both had it.. diagnosed after they were already married, had several children.  They took part in some study because how many married couples end up with MS?)

It has been getting better.. again I think I am very cognizant and managing whatever it is better as well.  Oh, another thing?  It has DEFINITELY improved or isn't occurring as much since the weather has turned cooler.  I think humidity this summer (which was very bad here for some reason this year) is a trigger for whatever it is.  The first cool day, I felt 100% better.  Then a week or two later it turned humid for a day or two and I felt 1000% worse.  Back to cool again, no humidity?  Problem virtually non-existent.  So I have no idea what THAT correlation is but I do know that, again, for my mom (and just because I lived it my entire life for 18 years, her first full blown attack was giving birth soooo... I've had a front row seat so to speak for 46 years now with her.. and 20+ years watching my grandmother) heat/humidity is a HUGE factor.  So I guess that's where I tie some things in?

[Sailorsong]

Hi,

  As one of the few people on here with a family history of MS I'd like to welcome you to the group.

  In my case they tend to be males and run on my father's side of the tree, that are susceptible to MS. Male cousin, Father, me, brother (possible but refuses to see doctor),and a niece.  

  I knew that I had MS early on in the DX process since I was having the same symptoms as my father, but it took 20+ years before I got my actual DX in 2010.

  I can actually see how the ENT doctor could have put down definitive MS. More than likely the Neuro put down MS on the referral and what the ENT meant was that the balance problems were "definitive MS" since he was not able to find a physical problem with your ears to cause the balance problems. If you could get the records from the ENT this is probably what you would see in the notes.

  This is one of my biggest gripes about referrals. There is always a spot on the form for the DX the doctor has either given you or is looking at. But it is never indicted if the DX given is suspected or actual DX. As a result patients can get wrong impressions of what a doctor is saying in the reports.

Dennis

[supermum_ms]

The further removed you are the less the odds, so with your paternal grandmother your odds are suppose to be even lower but don't forget your also talking about your first MS attack at 20 and your second happening at 45, with symptoms commonly associated with many things in your age group, and whilst MS isn't impossible is just not the most likely explanation so i'd definitely recommend you keep open minded about what could be going on.....Let us know how you get on

Cheers...........JJ

[MinecraftMom176]

Yeah, I have no idea why the neuro said that about the ENT so many years ago.  

I don't disagree some things may be stress related.. researching that avenue as well.  

I'm more concerned with the paternal side connection than the maternal as I totally take after that side physically and my grandmother started late.. but I have no idea what her history was prior to 1965 and I was a child when she was totally disabled by it (which according to my mother was voluntary, ie: she just was older, didn't want to "battle" an illness per se and it was easier to just ride it out in bed for the rest of her life.. no idea how true that is.. my mother greatly resented her soooo, grain of salt lol).

Anyway, this was just one route to explore given the family history (and we do know several mother/daughter cases, at least when my mom was actively involved in the MS Society locally when I was growing up and went visiting other patients quite a lot).  I've been through stress before with medical issues and not had this reaction (almost 10 years ago I was pregnant, had placenta previa, active bleeder, long term hospital stay to complete the pregnancy and still had my daughter 3 months prematurely, extended hospital stay for her etc..  Doped up with numerous medications to stop contractions.. Procardia, Indocin, turbutaline, atavan, 3 weeks total on a magnesium drip (a med student, it was a teaching hospital, wrote a paper on my case because I tolerated magnesium at near toxic levels unbelievably well).. and nothing remotely close to this.  And THAT was stress lol.. divorced less than a year later and an infant with health and behavioral issues.  Not so much as a headache practically.  

Anyway, could be ALL cumulative.. don't know.. will see what the investigations yield..

Thanks for your input, greatly appreciated :)

[supermum_ms]

Hi and welcome,

It would be very very unusual to have MS in both your maternal and paternal family history, unlike many other chronic conditions with a genetic connection, MS is not thought to be hereditary, children of an MSer have around 97% odds of 'not' being diagnosed with MS....

"Many people ask if MS may be inherited. While MS in not hereditary, individuals may be "genetically susceptible," increasing their risk of MS. This risk is slight, with only a three-to-four percent chance of a child (with a parent who has MS) being diagnosed with MS sometime in his or her future.

Researchers believe that genetics are only one piece to the puzzle, and other factors (such as common viruses, environment, diet, etc.) are also necessary to develop MS. Additionally, MS research is making great strides toward identifying causes and fine-tuning effective treatments."
http://www.mymsaa.org/about-ms/faq/

The way MS was diagnosed in the 60's didn't change all that much by the 80's but it's very different to the way MS is diagnosed now but i'm having trouble understanding how an ear nose and throat doctor even today (with or without any other information), could of determined your test results were "definitive for MS" when no test is actually definitive for MS yet.....diagnosis still relies on ruling out other conditions that also produce similar symptoms, abnormal clinical signs, and diagnostically suggestive/consistent test results eg MRI, LP, VEP, etc etc  

Before the 2000's vertigo in MS was usually assumed to be a lesion in the cerebellum and a pretty solid sign of a relapse when ever it returned, today MS research has worked out that around 60% of vertigo in MS is actually caused by BPPV, but whilst BPPV is definitely associated with MS, BPPV is the most common vestibular disorder in general...  

http://ms.about.com/od/signssymptoms/a/bppv.htm

What you've first described happened over 20 years ago "turn my head to check traffic for a merge to my left and suddenly the whole world picture would "shift" to the right" is very suggestive of benign paroxysmal positional vertigo (BPPV)........But you honestly do need to keep in mind that if something that happened over 20 years ago, is the only thing you've experienced that you can associate with MS (especially when it's a very common issue in itself), it's just highly unlikely to be related to what you've been experiencing in the last year and it also wouldn't typically be consistent with someone who's had MS for 20 years.

To be honest what you've described experiencing in the last year,  generally doesn't sound MSish enough for the most likely explanation to be MS......you've made mention that stress might be a factor and what you've described, actually wouldn't be inconsistent to what can definitely happen to someone who's been dealing with multiple years of high stress levels and then additional gets an illness (unary track infection and kidney stones).

I would suggest you actual seriously consider, that all the stress you've had to deal with may have potentially affected your general and mental health. The anxiety your currently experiencing may have more to do with how bad things have been for you overall....I'd definitely recommend you see your family doctor for a check up (eg blood pressure, blood tests etc) and discuss the stress you've been dealing with and ask for a referral to see a psychologist, if you feel you possibly need some mental health support and coping skills.

Cheers.........JJ