Scared...and Waiting

[amberp1]

I am a 31 year old female. My mother has MS and was diagnosed in 1980. Since then she has been through many surgeries, hip replacements, and other problems. I have watched her battle this disease my entire life. Lately over the past 6-8 months I have been experiencing numbness in both of my feet, and legs. It happens on and off all day, I do sit with my legs crossed alot...and have always felt most comfortable with my feet tucked underneath me or to the side. (Which I know is not good for circulation). I was sent to a Neuro a few weeks ago, to get some nerve tests and blood tests done to rule out MS. They said it was a MS evaluation. All the blood tests and nerve tests came back within normal range. So my neuro sent me to get a MRI Brain scan just to be sure. He called me last night and told me there were abnormalities on the right side of my brain, he said they could be lesions, which could be caused by MS. He is now sending me for multiple test. Neck and Spine and also some more in depth nerve testing. he said the only thing he knew was it is not a tumor......I am in total shock. They say that MS is not hereditary, but can be carried in a gene..Does anyone know anyone that has (so-called inherited) this disease. I am trying not to panic until they other tests are done, but I gotta be honest I am scared to death to go through what my mom has gone through.

Thanks for Listening.

[vonnag]

Hello amberp1,

I have read that if you have MS, your children have a 1% higher risk of getting it. That's pretty low!

I am interested in other peoples' answere as well, because I have children of my own. I know they wonder if they will have the same problem as me. We have reassured them that it is not hereditary.

However, MS is an autoimmune disorder. Autoimmune disorders can be hereditary. My sister has an autoimmure disorder, where the thyroid attacks itself.

I don't want to alarm you for no reason, just try to answer your question the best I can. Maybe someone else will correct me.

Your symptoms seem pretty mild, (I know they don't seem mild to you) and may turn out to be something minor. However, it sounds like you have good doctors that want to get to the bottom of the issue right away. That's wonderful! If there is something wrong, you will be able to do something about it very early.

The waiting time is the hardest part for me. I can't stand waiting for an appointment date, or test results when I am having problems that scare me.

Try to stay positive, and remember, it's not hereditary.

Keep us posted on the results of the tests.

[MSNik]

HI both of you. First of all, MS is NOT hereditary; however there is some recent school of thought that AutoImmune diseases might be the genetic link which MIGHT answer the question of risk...for instance, no one in my family has MS; however shortly before my dx, my mother was dx with rheumatoid arthritis, which IS an autoimmune disease...
Vonnag was correct in what she was saying....

However, there is alot more to your story then you need to worry about. For instance, in 1980, when your mom was diagnosed, there was aboslutely NO DRUGS on the market to try to stop or slow down the progression of MS...everyone who was dx before 1990 was in the same boat, having to take a wait and see approach.....since then, 5 drugs have been approved which are supposed to slow down the progression of MS! Not everyone chooses to take them; however more interesting is that in the past 15 years they have gotten so much closer to finding out what causes this disease and how to treat certain symtoms of it....most of the nerve pain drugs were not available during your mom's dx- most of the drugs which are currently being used werent around yet.

The fact that your mom had hip replacement and other surgeries IS NOT MS RELATED..

Next, the issue of ruling out MS. Blood tests DO NOT RULE OUT MS; however they are often done to rule out other things...MS is only diagnosed by ruling out everything else. Lupus, Lyme, certain brain infections and even Fibro all mimic MS...they present almost the same way....and because MS has never been documented to be the same for any two patients (they call it a snowflake disease) then its even harder to say "you have classic MS symtoms' and give you a diagnosis. The exhuberant amount of testing must be done before a doctor will comfortably give you a MS diagnosis. Ask your doctor about the McDonald Criteria- that will explain more about how MS is dx.

Abnormalities on the right side of the brain can also be ANYTHING! if you had a head injury, a car accident, migrane headaches- even eye issues in the past, they can all present as an abnomality of the brain. If it makes you feel any better, I have over 50 lesions (the most my Neuro has ever seen) on my brain- I graduated Summa *** Laude last year from an Ivy League school- work 50 hours a week, take care of a needy husband and 3 stepchildren....abnomalities pretty much mean nothing...so do the amount of lesions...its all in the placement of where they are as to how they affect us physically.

Numbness in the feet is also something I experience...they call it Reynaulds syndrome when it gets really bad. Its a circulatory thing- and its not an MS thing; although for some reason they do see it more in MS patients....my best explanation is that because the nerves arent firing normally, the cirulation which the nerves affect is also skewed....my numb/tingley/ sometimes painful feet comes and goes...however, i have had no feeling in my left hand since the onset of my symtoms. Ive now tried PT, accupuncture and a host of both drugs and supplements, and its not coming back. They feel the nerve damage is too extensive for it to ever come back....yet, just yesterday I was reading about a new drug which might help to rejunvenate nerve damage...so maybe someday.....

What im trying to do here is both show you that you are NOT alone as well as tell you not to worry about nothing. Do not compare what happened to your mom over 25 years ago to what MIGHT happen to you now. Its not the same and no two cases are the same...besides, most of us with MS live perfectly normal lives and it doesnt stop us from doing anything! You can be one of us if yu choose to be, its all in positive thinking.


Go get the tests done and let us know what the doctor says. Hang tough, life with MS is not all that horrible for the most part. Its unfortuante that your mom had other health problems going on and you were a 'child' having to see her struggle- that would scare anyone...but your not a kid now, and things have changed considerably...stay tough and USE US to vent when you need to. Thats why we are here.
Hugs
Nikki

[MSJayhawk]

While there is a minimal increased risk for inheriting the disease, doctors and researchers have yet to explain the malady's origin. It may be environmental. Is it scary? Not to me. I have had it for 25 years now and each day is treated one day at a time.

Kudos to your doctor for running tests.

What your mom has gone through may be quite different for what you might need to endure. Each of us is uniquely created and thus, our cases can vary from one extreme to another. Embrace the new adventure and continue your life to the fullest you can.

The hip replacements will more likely affect you due to the stronger gene factor affecting arthritis or bone density.

Unnecessary fear is not healthy and is certainly not profitable. Focus on those thing that will help you stay positive. Fear and worry do not come from God.

[amberp1]

Nikki,

Thank you so much for the encouragement. I really appreciate it. I will let you all know more through my testing process.

Amber