Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
i got the mri done..thru my insurances approval..i didnt go thru msaa....so the doctor's office calls me and tell me that its really important that i go to the doc today and so im sitting there hoping i dont have cancer or a tumor and then the dr comes in and tells me to tell her every single nerological event thats ever happened to me so i went back like 3 years and told every time i was numb tingly etc so she read me the mri thing and said that the pictures showed white masses..associated with lesion and that my symptoms are associated with ms...my mouth dropped open but im not sad right now cuz i guess im in shock but also i was like atleast i dont have a brain tumor or caancer....u know? and i made a joke out of it when i came home and was like "dramatic my ass, u guys ignored me for 3 year!" no one laughed tho and my mom was like i dont think u have ms cuz everyone gets dizzy..i get it too..i prob have the same thing, but she doesnt.
idk how to feel...i have a really close friend (teacher i became friends with from my hs) with ms and she goes to work, takes her meds (needles in her stomach), she has issues swallowing and sometimes her nerve pinches and her but and leg hurts...but shes ok....she not fragile like i originally think of when i hear ms and Montel Williams hes been living with ms for the longest.
but im shocked cuz i thought ms was hereditery...no one in my fam has it
thank u guys for ur support:-)
idk how to feel...i have a really close friend (teacher i became friends with from my hs) with ms and she goes to work, takes her meds (needles in her stomach), she has issues swallowing and sometimes her nerve pinches and her but and leg hurts...but shes ok....she not fragile like i originally think of when i hear ms and Montel Williams hes been living with ms for the longest.
but im shocked cuz i thought ms was hereditery...no one in my fam has it
thank u guys for ur support:-)
I was always told I "needed to learn to do my job and stop acting so lazy!" when I was suddenly too weak/ wobbly to do all my chores somedays when I was young (8 or so). When I was diagnosied at 18 with MS, I should NOT have been so disbieving of it and NOT started/ stayed on any one of the Disease Modifying Drugs until years later; maybe my legs would work better if I had. I really encourage you to start and stick with some DMD.
Your mother must be in shock too with something so disheartening, I'm very sorry and hope she accepts things too soon.
but WELCOME
MS is hard to dx because everyone starts differently.
Good for your doc to do this it took my docs 25 yrs to dx me.
You are in shock you are right. It will take awhile to come to terms with the dx.
You can be the way you are for
10-20 yrs it really depends.
If you do some self care that EVERYONE on the planet should do.
Like manage stress.
Not let yourself get too tired.
Eat right.
Some on this site have found relief on certain diets. It can help but everyone is different
Some say MS is a hidden disease b/c for the most part (especially in the beginning) we do not look like we have anything wrong.
I was getting home care & I kept getting you look so healthy why do you need help.
In between flair ups people can lead a normal life.
I used to go hiking/ camping/ canoeing etc. I was very active.
There is no " this person has MS & they are like this. You are not so you do not have it."
It can be wishful thinking. People that care do not want you to have it. they have to learn to accept it as well.
The was one of my neuro's put it.
He everything you see - hear - feel - taste- feel (including bladder) is relayed by nerves to the brain. Since MS affected the nerves & brain that leaves almost anything in those categories.
Hugs!! I hope you are well
Here's a visual for you. Imagine that a stranger shows up on your doorstep one day. This stranger, who's all loaded down with suitcases and duffle bags, comes into your home, spreads his belonging throughout each room and refuses to go home. You're the first one to meet this stranger, but in no time you're making introductions to the rest of the family. Over time, each person in the family needs to develop some kind of relationship with the new member of your household. As you may have already guessed, MS plays the stranger role well. It can easily take over your house and overwhelm your family. Here are just a few of the emotionals that your family may experience:
Grief, Anxiety, Anger, Guilt. The tricky thing about families is that no two people are likely to experience or express these feelings at the same time or in exactly the same way. The result can be a bumpy ride on an emotional roller coaster. So, put on your seat belts and get ready to acknowledge that each of you has a lot of feelings about this stranger called MS, and that it's going to take some time and practice to get comfortable with those feelings.
Recognize the communication barriers. It's common for people to have trouble talking to each other about stressful or frightening things. Here are some reasons why a family living with MS may find it difficult to discuss what is going on: no two people have exactly the same coping style; people have a lot of misconceptions about MS (like you do/did); family members often worry about upsetting each other; some people are just uncomfortable; and the subject of money can generate a lot of heat in any family - with or without a chronic disease to complicate things.
To enhance your communication, you need to make it a point to get better acquainted with your illness, this stranger. A really wonderful book to start reading when first diagnosed is MS for Dummies. Find reading material as printed stuff is great because you can take it with you and indulge at your convenience. The National MS Society web spotlight series is designed for folks who want to zero in on a particular topic without having to hunt around, Online programs are attractive because you can access them 24/7 and you don' have to be sociable about it! For those who like the group feeling but don't enjoy or can't get to a group meeting, chat rooms and bulletin boards offer this kind of supportive environment. Check out the National MNS Society's MS World chat room at www.natonalmssociety.org.chat and the forums offered by the Society. Keep in mind however that the information you will get will vary with its source - not everything you hear at a support group or online chat will be relevant to you or accurate. Value the opinions of others, but form your own. So be sure to check with your doctor or the National MS Society to verify any information that feel is iffy to you.
You really have a lot of work to do in aiding your family into accepting the diagnosis that you have been given. The book, MS for Dummies will also be helpful for your parents as there is information on helping your adult child with MS.
You didnt say exactly if you got a dx of MS, or if the neurologist wants you to start a MS therapy. There are many benefits of early treatment google them. MS is not hereditary. There have been a few threads on this subject. Try doing a search on hereditary MS and you will find many articles in DS about whether MS is hereditary or not. Also, remember everyone with MS has different symptoms, but a lot alike each other. Your friend with MS sounds like she is benign with her MS, you could be or not. Dont compare your MS to your friends, you may be totally different.
Youve got a long way to go to understanding your MS and helping your family with your diagnosis. Use Daily Strength for all your needs, questions, or rants. You will get a lot of good information here. Sorry this is such a long post. I will be thinking of you.
But at this point it shouldn't matter why we have it but how to treat it and deal with it is what matters and seems you are handling pretty well.
Learn as much as you can stay on top of it
a big hug for you
God bless you.
Keep us posted, Alma