Last post Mon, Jun 16 2008 2:41 PM by lorylin. 17 replies.
hi my name is sarah and im 17 years old. throughout the past 6 months or so i have been living with the fear of having a serious disease.. a few months ago i had an mri because i wasn't responding to my mood medicane. i was not expecting to have something show up because i had no signs of anything. i was perfectly healthy. however, something did show up. one brain lesion that could be possibly a brain tumor or ms. another mri was scheduled a couple of months later to determine what it was. it showed that the lesion had become a scar and had basically dissappeared. my nuerologist was completely stumped and said not to worry and come back in 3 months to have another one. i went back in february and this time it looked the same as the one when the lesion was gone but she mentioned some cloudiness in my brain. she again said not to worry and come back in 6 months this time. i have had no signs what so ever of anything until about a month ago. the first thing that happened was that the right side of my face went numb for about 2 days. i could not figure out what was wrong with me. until i looked it up online. it mentioned ms about a thousand times and i started to freak out. it went away though, and i started to be more relaxed. but, for the past week or so i have experienced almost every symptom that is mentioned to be relevant to ms. my face is numb again and it has lasted for about a week. i have had a constant muscle spasam in my leg, my vision is blurry and seems different then it normally has been my whole life, i am having balance problems, and sometimes i use the wrong words for things.
i haven't really said anything to my parents or friends even because i am deathly afraid of having ms. i have been researching it constantly for a few days now, and decided i needed to do something so i am writing this question. i have been through a lot in my life like dealing with addiction, loss of loved ones, and going through intense treatment when i was 16. i am so incredibly scared to have this disease because i do not know how i would function if i couldn't walk or move my limbs... i am very active and very social person so it would be devestating for me.
the main question i am asking is WHAT DO I DO? i havent done anything yet but write this question and i know i need to do more...
if any one has ANY advice i would love to hear it.
thanks so much
Sarah,
I know you're scared but you MUST get this checked out as soon as possible. Not next week, tomorrow. What you described is exactly what I've gone through with the strokes I've had. I'm not saying you're having strokes, but it's something you need to get cleared up. There is NO WAY a neurologist should dismiss you with a shrug. If you can, get a new doctor. Have they done any bloodwork?
If something is wrong, you'll be ok. It isn't the end of the road and you might find that your life is enriched by the experience of being ill. I know it sounds weird, but it can be true. After you know what's wrong and you accept it, deal with it, it will be your choice how to proceed with your life. You can do this.
Please get this checked out tomorrow. Don't stop until you get an answer.
Liesl
"Important events are obscure. Some believe all manner of hearsay evidence; others twist truth into fiction; and time magnifies both perversions."Tacitus
Dear SB04,
For some reason your note was the first message that I opened tonight when I first joined this site and I just have to respond.
No, I will not tell you what to do, etc., but offer a different prospective on wha you are going through at the present time. A quick background comment.....I am much much older than you, however just as you are, I am also totally scared....for you see, after 69 years, I lost my right leg below the knee to an illness called PAD, a circulatory disease. Now that is not what has me scared because I am now in a prosthesis and am learning to walk......I am scared for what was found during the several surgeries that I went thru in late 2007...possibly a multiple myaloma condition, a form of blood cancer was isolated in a bone marrow biopsy. Like you, I am having to go to an oncologist on a frequent basis....always scared of the outcome. Just as with MS, the seriousness of cancer has me wondering just where this is leading me?
The thing that I can share, is to reach deep down in your being, and be at peace at that level, for it is only oneself that can understand how scared we are of the unknown Simply getting to that state of inner peace; by whatever means of prayer, meditation, interacting with a Higher Being that you may believe in to accept the fact that it is through our inner strength that we can overcome adversity, will provide you with musch solance. At your young age, anything is possible, however you are the only one that can generate that fighting power to overcome whatever may come your way.
May you receive many blessings and realize all the comfort feelings you so desperately seek ......Tileg
Hi, I understand what you are going through it is hard to tell anyone about MS. But I have to say you need to tell your parents they can be there for you.You need somone there to take care of you. I have a great website for you it is www.patientslikeme.com there are alot of people there that understand they can answer all of your questions. We are all scared. I have to say there are people that are worst off then you but they don't let this MS BS thing take over their lifes. I have MS too and I have 3 kids. It is hard to tell them that mom can't do things that other moms can do but I can be there for them. I hope you go to that site I hope you can learn alot from others. Hope to see you there.
Sarah:
In fairness to the neurologist, most neurological problems are not straight forward and a certain amount of ‘wait and see' is needed. MS is particularly/usually/frequently difficult to diagnose.
IF your ailment turns out to be MS, from your description, it does not sound like your case is particularly aggressive or progressive. (In fact, it sounds like a ‘mild' case-if there is such a thing!)
If you look at the statistics, you will find that the chances of MS putting you in a wheelchair are not very great. Furthermore, now that the ‘disease modifying drugs' are available, the odds of ending up in a wheelchair are even slimmer. A few people with MS end up in wheelchair within five years after diagnosis, some people don't start using a cane until they are over 60 years old. Being a female, 17 years old at diagnosis, the odds would put you much, much closer to the latter group than the former. So, do not freak...
--hinge
Sarah it's understandable to have these fears. I know many people who never go to doctors due to the worry of bad news or having something. Many times if they had gone sooner prognosis and treatment would be a lot better and easier. You don't want it to turn into something bad or untreatable. Having numbness in your face isn't normal. It shows something is going on. What does your family think? Are they encouraging you to see further doctors and testing? You need support through this scary time. It doesn't matter if your 17 or 50 having those symptoms would be scary for anyone. I'd say just to keep in mind your young and you have the world at your finger tips. Don't let this keep you from growing and succeeding in life. You have support here. Any time you need to vent, talk, or just scared you can come on here. We'll always talk to you. You just don't have to go through things by yourself. Your family is your biggest support system and a good foundation for you to leave on. Best of luck to you kiddo and please keep us updated.God Bless!
Experiencing all those symptoms would be really scary for anyone! I hope you'll go see a doctor as soon as possible and I hope you'll stick around with us...people here can be very supportive and helpful but you'll also need some "real" people by your side too. How's your relationship with your family/friends? Do you have someone in mind that would help you find a doctor if necessary, make the appointment, and get in there! You need to find someone who's going to work with you until you have an answer!
I wish you the best!
ok so after writting that note i went and talked to my mom about what was going on. i explained to her what my symptoms were and she tried to tell me that she has a feeling that i do not have ms. but i feel like she is justifying every syptom i have which is making me mad like she doesnt believe me. dont get me wrong, my mom is the kind of mom who would die for me. she will do anything and everything to help me. she told me, like some of you said, to go see a doctor. i do not really like the nuerologist that i am currently seeing so she told me about an ms center in seattle that i could go to. i asked if i could go by myself and she said that was fine.
i plan to make an appointment asap and get this thing figured out. i am hoping and praying that nothing is seriously wrong.
thanks so much for the support. it really helps me!!!
-sarah
My thoughts and prayers are with you. My hope is that you find out what it is, it is not knowing that had me in a tizzy for the longest time.
Also, when you know...you can then be in control of what to do and how to treat it. You can then begin to live, don't think of it as not living a full life, but, starting a new adventure with what ever it is you have so you can live your life to its fullest.
I hope you can find strength and not dispair, I hope you do not find sadness, but, courage.
If ever you want to talk...let me know. I will try to help. I have been living with MS for 15 years now. And I have foudn all kinds of ways to do things that I could not do before. So, there is always new adventures with this disease. And there will most certainly be some mountains and cliffs to overcome as with any disease.
My mom does the denial thing, too. I know it can be extremely frustrating! I think for my mom it's a matter of feeling guilt (my disease is genetic, though she didn't pass it on to me) and the inability to face serious illness in the person she loves the most in the world. It sounds like your mom is the same way. Once you get everything figured out I highly recomend some sort of support service for both you and your family. I think being young may even help your family deal with what the future holds. I hope so, anyway.
As I stated before, you CAN do this.
I just read your story, and if I were a gambling man, I'd say you have MS. I was 15 yo when I began experiencing similar problems although mine never went away. You see I have a less common form of the disease that there is no effective treatment for. It sounds to me like you may have a relapsing/remitting form. There are about 5 or 6 different drugs called interferons that limit the number of attacks. When I was 16 I knew that I was invincable so it hardly phased me wen my parents told me the doctors knew diffinitively that I had MS. I was certain that since I now had the disease scientist would stop fucking around and say "oh, we have to cure this disease now, Steve has it." Here we are, 18 years later, and they still have not figured out shit. But you cannot blame them. As a matter of fact when you try to assign blame it tends to make things worse. The only thing that has really worked is keeping a Positive Mental Attitude. Stressing out over the possibility you may have MS will almost certainly exacerbate the problem. You have an advantage right now. Find out for sure if you have MS, that way you can get on one of the drugs that may keep the disease in check. I cannot say I know how scared you are because I do not fear ANYTHING after dealing with an incurable/untreatable condition. All I can say is play the hand you're dealt the best you can and make sure you have good friends/family to help you along mentally as well as physically. I cope sometimes by telling myself " it could have been worse", sort of a glass-half-full thing. Keep your head up, like I said, I've had a more severe form since I was 15 and I am now 33 and still walking every day(with a cane, but that only started 3 years ago) Living in fear is probably as bad as having what you fear.
HI SARA I HAVE THE NUMBNESS IN MY FACE AND DIZZY I FIRST THOUGHT IT WAS MS AND I HAD CT SCANS TALKED WITH TWO DOCTORS AND THEY BOTH SAID I NEEDED TO GO TO NEROLOGIST AND HAVE MRI'S DONE ONE OF THE DOCTORS SAID IT SOUNDED TO HIM LIKE SPINAL STENSOIS AND HE WAS RIGHT I GO TO A NEUROSUREON NEXT WEEK FOR MY THIRD BACK SURGERY. I HAD MY FIRST AT NINETEEN YEARS OLD I HAD JUST LOST MY MOM AND HAD JUST MARRIED THAT WAS 35 YEARS AGO JUST KEEP YOUR FAITH HE WILL ALWAYS HELP YOU THREW ANYTHING HE'S THE DEAREST FRIEND I'VE EVER HAD. JUST TAKE ONE DAY AT A TIME.
ok so i am wondering if dialated pupils has anything to do with ms?? because mine are really dialted right now and i am in a very light room...
hi kiddo, man thats hard,but hell its life. sounds kinda like i dont care,but i do. ive had it for almost as long as youv been alive. there is no better way to cope that just hang on and ride. grit your teeth and hold on tight. lift, run ,climb ,swim ,diet,(.i gave up the whole red meat thing) get mad . GET CHECKED!! GET CHECKED!!! AND GET CHECKED!!! oh yea gather your friends and hold them close,its the one thing that really helps.
No; dilated pupils are not typical of MS. You need to let a neurologist sort this thing out. Make sure you mention the dilated pupils. --hinge
