Could this all be related?

suzyqz_2007 · 06-06-2008, 02:28 PM

I just read something that was confusing, which to me is a constant state I live in! lol The article said that researchers think MS may be inherited, then later on it says it is not a directly inherited disease.

Anyway, hereditary or not, I got to thinking about my situation as well as my younger brothers. He has had for a while now an inoperable brain tumor. Actually it can be operated on but there are way too many risks involved, including the possibilty of death. He's dealt with disabling migraines ect. for years as well as other problems connected to this tumor. He is going to the neuro in a few weeks for some tests and a yearly check up and I told him to mention that I have MS.

As we were talking the subject of my moms health came up. We both had forgotten that when she was young she had a small tumor on the base of her brain that was treated with (I think I'm correct) cobalt treatments(?). She has also had thyroid trouble (including tumors)and terrible migraines. To this day she has had well over 100 tumors removed from her neck and vocal chords and no longer has any part of a thyroid gland.

Before being dx'd, about 15 years ago, I went to a neuro because of terrible headaches and vision problems. I was told I had empty sella syndrome and my only problem was migraines.

Now that I think about it and knowing what I do now, I'm beginning to wonder if there isn't something relative about all this. lol

Kitty · 06-06-2008, 02:38 PM

Suzy,

That was the first question I asked after I got my dx. "Is this hereditary? Will my kids get this, too?"

My first Neuro said that it's absolutely not hereditary. My current Neuro says it is. Not necessarily that they will get it - they just have a better chance of getting it. I pray everyday that they don't.

I guess that's the same with all diseases/conditions. You stand a better chance if it's in your family.

Neurological problems are rampant in my Mom's side of the family. Her sister had a brain tumor and both my Mom and her other sister had Alzheimer's. My older sister died in January of early onset Alzheimer's. And now, I have MS. I just learned that my cousin has MS, too, but she is on my father's side of the family. I'd love to find out who else in my family has it.

I choose not to worry and fret about it. It is what it is. I'll take care of myself the best way I know how but in the end what's gonna happen will happen.

suzyqz_2007 · 06-06-2008, 02:45 PM

herekitty I agree, I try not to worry about it too. It's just one of those things that kinda gets me to thinking. And thinking sometimes tends to get me in trouble! lol

mom23angels · 06-06-2008, 03:25 PM

I wouldn't say that I never worried about it for my kids, esp the one with Autism and already having Neurological problems. I truly believe my Mono had something to do with it. I always said I never fully recouped from having Mono. I wonder, do we still carry Mono in our systems and will that show up in my CSF? I wonder if they'll ever find out how people have MS.. kinda like will they ever truly find out about Autism?

~ M

Erin524 · 06-06-2008, 04:24 PM

Quote:

Originally Posted by mom23angels

I wouldn't say that I never worried about it for my kids, esp the one with Autism and already having Neurological problems. I truly believe my Mono had something to do with it. I always said I never fully recouped from having Mono. I wonder, do we still carry Mono in our systems and will that show up in my CSF? I wonder if they'll ever find out how people have MS.. kinda like will they ever truly find out about Autism?

~ M

EBV (Epstein Barr Virus, virus that causes mononucleosis) stays in your system...inactive, I believe. When I was getting all my fancy blood tests to see what could have been causing my problems, my EBV titer came back positive. It had been 10yrs since I had mono.

I also think that I never fully recovered from the mononucleosis. I've just never felt the same since then. I would not be surprised if when they figure out exactly what causes MS, that mono would be the culprit. I think it's a combination of genetics and the mono that triggers it.

Natalie8 · 06-06-2008, 04:37 PM

Quote:

Originally Posted by mom23angels

I wouldn't say that I never worried about it for my kids, esp the one with Autism and already having Neurological problems. I truly believe my Mono had something to do with it. I always said I never fully recouped from having Mono. I wonder, do we still carry Mono in our systems and will that show up in my CSF? I wonder if they'll ever find out how people have MS.. kinda like will they ever truly find out about Autism?

~ M

Hi Erin and MOnique -- I know I've brought this up before in the forum but I was totally healthy until I had mono 2 1/2 years ago. Then got diagnosed with MS 10 months ago. I'm convinced it tripped the MS. My new neuro said that's a good possibility in combinatino with having a vitamin D deficiency and growing up in a cold place. I've never truly recovered from that mono. And I know a germ box student gave it to me!!

suzyqz_2007 · 06-06-2008, 04:46 PM

I had mono when I was in high school. It was so bad that I was homeschooled for an entire semester. There just has to be a connection to mono and MS somewhere don't ya think?

mom23angels · 06-06-2008, 05:26 PM

Natalie,
Well... I grew up in Mass *lol* and it's still cold right now. I probably have a Vitamin D deficiency cause i'm lactose intolerant usually avoid dairy and all that stuff. I looked at my bloodwork and I'm borderline deficient in a lot of things so I'm taking vitamins up the Wazoo! I know I read somewhere about a link between Mono and MS and I wouldn't be surprised.. BUT.. I had mono when I was 19.. and I would say my first real bout of anything was 2005 when I was 30.. so I went 11 years before symptoms.. *lol* well MS has kicked it up a notch and is kicking my tuchas now!

~ M

Mono is

Kitty · 06-06-2008, 07:03 PM

I found my youngest sons baby book and started reading what I had written in it way back then (1987...I was 27).

Would you believe I found this: "I'm having spells of numbness and vision loss especially when I get too hot. Doctor is going to test for gestational diabetes."

Holy cow!! Have I had MS for 21 years?? I had mono when I was 19. I had chicken pox when I was 25 (horrible experience). Both are EBV I believe. Episodes of numbness and blurry vision when I'd get too hot - this happened frequently. It always went away when I'd cool off so I never thought much about it.

I was dx in 2005 but I think I've had this stuff for many years. This explains why my symptoms now seem so bad to me - I'm thinking "wow, this MS has progressed a lot in 3 years". But it's really over the course of at least 21 years...probably longer.

mom23angels · 06-06-2008, 07:13 PM

That's the stinky part, not knowing when it truly started. I mean if it started when I had mono at 19 and I'm 33 now, then MS has been rather kind to me *lol* but...if it's only happened the past 3 yrs. then oh my..this has progressed fast. I have had Mono, Chicken Pox, Cold Sores...my immune system is just plain pitiful at this point.

I signed up for the Wellness Expo..maybe I'll learn about immune systems then.. OR I'll get free pens!! woo hoo!!

~ M