Recently diagnosed

[Brianna44]

My name is Brianna and I'm 17, I was diagnosed with MS about a month ago. Growing up I've watched my mother battle with MS turning from a strong indepent woman to someone who couldn't go through a normal day without someones help.

I haven't started medicine yet because I was diagnosed right before I went to college about 2000 miles away. I'm looking for a new nerologist but its really hard to find one with times that won't conflict with my classes. I'm obviously very scared and don't really know who to turn to, my  dad passed away suddenly about two weeks before I was diagnosed so I'm finding it very hard to cope with that as well as being diagnosed.

Does anyone have any good advice?

[Mip9030]

Hi Brianna. Let me start by telling u I too was diagnosed as a teenager at 15 and my mom also has MS. Difference is she was actuaaly diagnoses 4 years after I was. I know it's overwhelming & a lot to absorb right now. If I remember when I was diagnosed as a sophmore i would constantly just look around at other kids my age and think how different I was from them and they have no idea.
I was started on Avonex which had just come out in 1999 when I was diagnosed and it didn't work for me. I didn't like it either. Side effects were bad. I would do it Sunday's and feel like crap through Monday. It was while I was on Avonex that I had my first big flair and then another 6 months later. After That I switched to copaxone which I was on for 5 years. I often wish that I never took Avonex bc maybe Iif I had started on copaxone I wouldn't have had that first big flair but we can't play that game. Given everyone is different & different stud work for different people. True that copaxone gives u some akin dents but for me it wasn't that serious. I wouldn't let that deter your decision. Like Lulu said there's a lot u can do to treat the injection sight & truth is I never really did anything to them.
Hope this helps!
-Michelle

[Lulu54]

Hi Brianna,
Let me add my welcome and that I'm sorry you are dealing with so many things here at once.  There are many points I want to cover, and I hope I remember them all.

You are in a much better place than your mom with the MS - I don't know when she was diagnosed, but there have been so many changes to the disease modifying drugs available in the past 18 years and then in the past 5 years it is staggering.  And there are a lot of even better treatment options still to come.  

The prognosis when you mom was dx'd was probably much different than it is now, so please don't assume you will end up like your mother.  Your disease has been found early and gives the docs that advantage.


There are lots of us here on Copaxone  The lipoatrophy from the injections can be slowed, and/or avoided is you use good injection techniques, follow up with massage 24 hours later, and regularly rotate the sites.  I chose copaxone because it doesn't have the flu-like symptoms and it doesn't cause liver damage and it doesn't bring on depression.  All of those symptoms can occur with the interferons (avonex, betaseron and rebif/extavia).

Since you are on a college campus, which is always a hot bed of germs, I would guess that Gilenya is not an appropriate choice for you.  This is an oral med, but it also significantly depresses the immune system.  You need all the immunity you can muster for the dorm life and colds, flus and other cra p that gets passed around.  

One of the *good* things about MS if you can call it that, is MS makes our immune system overactive, and most of us are pretty healthy otherwise.  I haven't had a cold or viral infection in years. This can work to your advantage on a college campus.  I work in a university and see all of these regularly but don't get sick.

Every college campus has a student health service program.  They offer counseling as well as medical treatment.  But you have to self-identify if you need assistance or struggling.  You might want to consider making an appointment now, go meet with the clinic personnel and review your medical information, just in case you need them in the future.  Do this early in the year before they get really busy with all the flu, cold and respiratory cases they will start seeing about late-October.

I don't know which direction you are heading for school, but on the east side of the country, the germs and illnesses seem to coincide with the heating season.  Once the furnaces are turned on and all the windows and fresh air are closed out the germs take over and multiply like crazy.

Student health clinics also have counselors to discuss depression, life adjustments and loss such as your father's death.  While you are there, ask about what else they can do for you.

The nice thing about the clinics is they offer appts. that are convenient on campus and can be fit around your class schedule.

Running? You can still do that, but take lots of precautions to keep yourself cooler.  Run early in the day.  Hydrate lots.  Look into some types of cooling garments that will control your body temp.  Don't run in extreme weather. We have some very physcally active people here who can add more tips.

If you are not of a pretty sizeable scholarship for school, please look into some of the options out there to assist people with MS with this debt.  I believe NMSS runs a scholarship programs.

Well that is probably enough to absorb right now.  I'm glad you found us and please come back with questions.  We are a seasoned and experienced group here.  Welcome again.

be well,
Lulu

[Brianna44]

Thank you everyone for your kind words and help, I was wondering if anyone has ever heard of the swank diet my neurologist recommended it and I've been trying to eat better and i have totally eliminated pork and beef as well as trying to eliminate sugars from my diet.

I was also wondering what anyone's thoughts on Avonex are, my mom wants me to take Copaxone but my old neurologist told me that Copaxone can cause dimples on your skin and being so young I shouldn't because then I would be very self conscious for the rest of my life.

Im just wondering if anyone has gotten dimples from Copaxone or if the 'flu like symptoms' from Avonex would be very hard especially with school work to do.

Also i went running today and it was really hot out and my legs started hurting and tingling really bad, that's normal though right? Thank you so much for your help and time in helping answer my questions.

[msisbs]

I think you have an advantage over all of us despite the trials you have been through. You are familiar with the disease because of your mom, and you are young and otherwise healthy.
I'm sure its still scary but you have seen firsthand what each struggle and success looks like in the daily battle. Your mom will likely be an invaluable asset to you if your symptoms ever progress. There's nothing like calling up someone who truly understands your challenges and cares about them getting easier.

Also you have so much extra time for the DMDs to work. I got diagnosed "young" and you have still beat me by almost ten years. So, here's hoping you start treatments soon and never progress to even mildly uncomfortable symptoms.

I wish you the best of luck with everything

[LisaJF]

Im sorry to hear of your loss and you have my sincerest condolences.  Boy, do you have your plate full at such a young age.  

I would think considering the loss of your father and newly diagnosed with a disease such as MS, you don't know which thing to tackle first.  

Yes, being online on a forum such as this with people who are caring, reaching out and extending their support is easier than to have to look for a professional, find the one you like and will be conducive to your healing process.  

My suggestion is to find that counselor no matter how insurmountable the task may seem.  Once you get over that hump you will thank yourself for doing so.  Then once you do that, at some point, you're going to have to find a Neurologist that will take the reins and be the captain of your "health" ship to guide, treat and maintain optimal health status of someone as young as you (although they do that for us old people).

Welcome to the forums.  You're at a good place here.

Lisa

[rendean]

Welcome Brianna,

I don't have much to add..the others have said every thing I would have posted. But, remember we are here for through thick or thin to answer your questions (BTW, there are no dumb questions).

If you need to private message (PM) someone you can do that on your private main page. I am sorry you have so much to handle at such a young age but you reached out and that's a mature, wise thing to do given the circumstances.

Please keep us update with how things are going!

Sending hugs,
Ren

[grannyhotwheels]

Hi Brianna and welcome to the family...

You are so young to have to be dealing with all of this and I'm just so sorry for you... I agree with sidesteps about the grief counselor... I also think you need to find a Neurologist as soon as possible...

Maybe your Neurologist from your home town can help you with that... You also need to get copies of all your medical records and copies of all test you have had done... Keep these for yourself...

Going to a new Neurologist will also give you a chance to get a second opinion which we all need to have... Make sure you keep a time line (diary) from when your first symptoms started until now...

If you will look in the top right hand corner of the page under "Health Pages" (yellow icon) it will show you a ton of valuable information for about any question you might have about MS...

This forum is also a very wonderful place that is full of amazing men and women who will be with you through everything... We are all either diagnosed with MS or still waiting on a diagnosis...

If there is anything else I can help you with please don't hesitate to holler at me... Keep us informed on how you are and don't forget to get that doctor thing going...

I am so sorry about your Dad... I lost mine when I was 14 and I know how hard it is... I'm here for you anytime hon...

I'll be praying,
Carol

[Brianna44]

I really don't have many symptoms I actually went to the nerologist for migranes and we ended up getting a mri done, there were two little spots but the nerologist thought it was just from my migranes to be sure though we got another one a couple months later.

Sure enough the spots grew and I had a spinal tap done two days later, and I was diagnosed a couple days after that. Ive had 'numb' feet and tingling down my legs but nothing too bad. I'm worried though because I'm very active and I dont know how i would deal with that if i couldnt play sports anymore.

I've been thinking about counsling but its hard to talk out loud about everything. It sounds stupid but its so much easier posting something online to someone who will never see you. My grandma has contacted my college to try and find a support group though so I might try that and see if it helps.

Thank you so much for your kind words though. I really appreciate it

[Sidesteps]

Brianna,

What symptoms do you have? How are you doing currently?

Oh boy! You have opened a can of worms with me. My daughter is named Brianna. :) Her Daddy passed away nearly 6 years ago. I am struggling with MS like symptoms but am in limboland. I worry about my kids. :(

I think the first step would be emotional health so my first suggestion is to see a grief counselor. It is very hard to battle much of anything emotionally or physically when you aren't strong enough to do so and are riding the big grief wave. It just takes to much work. It would be very difficult to care for yourself adequately even if you were healthy let alone a chronic health issue so please give yourself some lenience there okay? If I know anything about grieving... we are constantly questioning our abilities with damaging self talk like "before, I was able to do _______."

It's important to replace the non-productive self talk with a healthy, realistic goals. The person that helps you should give you a safe place to release your fears, judgement and give you steps to motivation. It will take a couple sessions but you hopefully will find compassion, guidance, energy and goals to help you remain focused on YOU if you find the right person. You deserve that.

(((Hugs))) PM me if you need anything.