Newly diagnosed and totally lost...HELP

[Brandy_Wine85]

Hi all,


I'm 26 and was just diagnosed two weeks ago. I started feeling wired "vibrations" with the movement of my head which initially led to a visit to my primary doctors office. Shortly after I developed a cold that got so bad I was admitted into the hospital along with the constant vibrations and pain/numbness in my hands. I went thru a series of spinal taps and back to back MRI's to discover the lesions on my brain.

I am trying to remain as optimistic as possible, and trying not much to panic. I am so lost on where to start and what to do? I feel like I am crazy and feel that everyone else feels the same when I tell them that my body literally feels like the game "Operation". I went to the eye doctor yesterday and learned that I have minor damage to my eyesight, and feel like its just another string of bad news. I can no longer grip onto anything very tightly and my handwriting now mimics that of a 4 year old. I feel like I went from a normal healthy 26 year old to now carrying around half of a pharmacy in my purse.

I feel lost and all alone with no one to talk to. I have an extremely supportive family and a close knit group of friends that I can rely on , but I feel as if no one understands.

Can anyone impart some wisdom here? Are there support groups? What can I expect next? How will I know if I'm having an attack? Worried about my job and wondering, what do I do from here on out?

Feeling helpless in Texas,
Brandy

[Nanobaby]

Hi Brandy,

Welcome to the board! There are local chapters of the national MS society, one of which will hopefully be local to you and be able to hook you up with a support group of sorts.

As for words of wisdom - MS is a very individualized disease so every person has different triggers and levels of triggers prior to attacks. MS patients tend to be very sensitive to heat, but I think the level of tolerance is unique to each person - like one person may be able to tolerate only 1 degree of heat while the next can tolerate 5 degrees higher than THAT person. Does that make sense?

As for what you can expect next - treatment recommendations from doctors, as well as non-medical laypersons. And also people making insensitive statements, but just let those roll off your back

What do you do for a living?

[Brandy_Wine85]

Thank you for replying. I feel that at this moment someone other than family and friends, who constantly give you the " you're gonna beat this" speech is nice to have around, especially when that someone else even has the slightest glimmer of what you are experiencing.

I actually work at a hospital as an assistant lab manager in cancer research. There are days when I'm constantly on the go and am up and moving, but most days it's a lot of computer work and sitting in a chair all day doing reports, etc. The thing is I drive about 40 minutes to work everyday, and especially with the tingling, numbness and shock feeling, I'm really worried how this will effect my job, not only that but what will happen when I need follow ups with doctors, scans, or another attack? I realize it's probably too early to start worrying about that, but the thought is there.

Thanks for listening

[Nanobaby]

Have you talked to your employers yet? I think they would be able to accommodate you, once you've had a chance to discuss with them.

Doesn't hurt to want to prepare in advance and I see that you are in that mindset-it's a good thing. You actually care enough about yourself to reach out to hopefully like-minded others who might be able to give you some insight...rather than sit in denial or revel in self-pity.

[flipz11]

Hello Brandy,
I was diagnosed September 28, 2011, a month before my 24th birthday. While it didn't come as much of a shock to me like many others, because I grew up with it (my dad has had it most my life), it is still devastating.

I told myself I would be so optimistic, I would be okay because I had already been through the grieving process with my dad but little did I know I still needed to go through my own. (and I still am). This is your life, your health, your body, and you have to live with it, but as you probably know from working in a hospital they have good drugs that have proven to work for years now.

I know how hard it can be to talk to people who really don't get it and all you want is them to understand even the slightest what you are going though. I think a lot of times people just aren't 1. educated on the disease or 2. they do not know what to say. (my boyfriends grandma told me at least I wasn't dying) And even with in the MS community it can be hard because not everyone is your age and not everyone has your hopes and dreams.

[flipz11]

sorry I hit enter before I could finish. Dang hands have a mind of their own sometimes.

Anywho, best advice would be to find a support group in your area. I go to a group for young adults which can sometimes make it a little easier to relate. If you ever need to talk my email is on my profile. Just let me know and I can send you my full name if facebook is easier. <-(if you would like to talk)

I wish you the absolute best in finding peace with your new condition and with the treatment plan.
Kayla

[Brandy_Wine85]

Kayla,

Thanks for the imput! This has by far been the hardest thing that I've ever dealt with in my life, much less even having to begin to fathom and accept this, seems so much worse.

How did you go about finding the support group in your area? Is there a site for that specifically? I really am lost on where to begin

I did my first set of steroid treatments, and now that my face is swollen and puffy, my immune system compromised, and the fact that I want to eat EVERYTHING in sight, I'm no longer able to sleep... is this normal? Now that I'm home from the hospital, I feel as tho simple things such as even getting out of the bed, and brushing my teeth seem like such a chore. Talking to and trying to explain how I feel to my friends most times seems pointless, as they usually tend to shoot me the "what have you been smoking" look and then tend to go into some powerful motivational speech about how I'm strong...yada, yada, yada.

Facebook would be wonderful ! At this point, I have no one that I can talk to and relate to that even can begin to understand!

[Brandy_Wine85]

I also feel.... ashamed and embarassed to tell people that don't yet know. I just got out of a 14 day stay in the hospital and while a lot of people know that I was in there, most don't have the slightest clue as to what I found out while I was in there.

How and when did any of you finally come out and share the news with others?

[flipz11]

Brandy,

I was happy to see you wrote back . I hear you on trying to soak this all in. I've know since August, December being by far the worst month for me, and I still cry all the time because it is not fair. Most people will just tell you to be optimistic but I say you should grieve if you need to because if not you will just goes through years of denial.... and then grieve. As far as being so young, I was told that having to deal with this at such a young age will help you gain perspective on things in life that others don't learn even half way through their life time.

As far as the support group if you get on the National MS Society website at the top in small black font it has a link to find a chapter. You just choose texas, register online, and contact them asking for a young adults support group. They are super nice and helpful. I got an email back within like a day with the support group leaders email. Consider bringing a friend or boyfriend or husband? with you since this could be really hard on you at first.

If you haven't visited with your neuro yet about treatments, that will be your next step. No one could possibly tell you how any of them will work for you or if you will have symptoms on them so best advice... choose the one that you feel most comfortable taking.

My first symptoms I never even recognized. The next episode progressively got worse. I probably experienced ten different symptoms from about may-sep. I actually found out in aug. but was diagnosed in sep. officially. I came out of my episode just fine so I did not have to take steroids. I know they suck but its the only thing that will help you speed up your exacerbation.

You are not smoking anything, promise. Fatigue is beyond normal. Taking a shower kicks my butt. All I can say is manage it or you will wipe yourself out. Continue to work out as much as you can.

You will get every speech, every comment in the book. Actually my blog talks about this because I was getting so mad. I am still figuring out how to deal with this. I just bite my tongue but it is hard.

Do not in anyway feel ashamed or embarrassed. You did not do this to yourself. We did not choose to have all these crazy symptoms. Telling people is your choice. I would say you need to inform your boss, but it is no ones business until you are ready. Half my family still doesn't know, and almost every single one of my friends still have yet to find out. Telling people is all up to you

Sorry this was so long. I hope this answers most questions.

Kayla

**Line spacing added by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.**

[susanmastrocola]

Smm69

Hello Brandy,

I was diagnosed when I was 26, 6 months after my wedding. I was extremely depressed for 2 years. I, too had trouble revealing it to friends & family, even to this day. (Now I'm 42.) it SUCKS....

I can tell you that I have had many symptoms all these years, later, but I remember the first few years, I had more relapses. I tried Avonex in the beginning, but hated the huge needles & flu symptoms. After I had my kids I started Copaxone & stayed with that for 8 or 9 yrs. Seemed to keep me "stable." I'm still able to do most things as before my diagnosis, (drive & walk), but I have leg weakness, bladder issues, on & off optic neuritis, etc.

I stopped working when my kids were born. I probably could have continued, but would have been in bad shape to care for my family. Don't listen to people who tell you that you can't have children, etc. Your body actually goes into a remission while pregnant. I felt good during pregnancy & had 2 normal deliveries. Wish I had someone tell me that before while I was agonizing over the decision.

Everyone does have different symptoms, but since you've started out with more of the " sensory" symptoms, you will most likely do better. That's what the research shows, anyway. Hope I helped to give you some optimism.

I'm still afraid every day when I wake up that I'll have new severe symptoms, but unfortunately this is our disease that we have to deal with. I just started the new drug, Gilenya, because I'm burnt out with the daily injections. I'll let you know how I react to it.

Take care.
Smm69

**Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.**

[KittahNY]

I was diagnosed a few weeks before my 43rd birthday. I feel your pain. I have told my close friends and my employer, but noone really seems to understand it or care enough to do any research about how MS affects us.

Stay strong and set a plan for yourself. take the meds your doc recommends. And definitely find a local support group. I go to my first support group meeting the 30th and I cannot wait. this site has helped tremendously.

There is TONS of info on here. Browse. a LOT.

Best of luck to you!!

[jojo18]

hi. im Melissa. i am a 21 year old college student.(environmental science and political science double major)
and unlike most, there is no family history of MS.

i was dxd at 13, so the shock or what ever you what to call t didnt hit me b/c i didn't know what it was.(it took about a year for it to)

and no, my friends really don't understand it. but tey accept that they dont and cant andare very supprtive of me anyways. they let me vent about crap if i need to and laugh with me at some of my odder symptoms.
(MS has caused me to walk really really fast, like 4 mph on average. shouldn't i walk slow? lol)

8 years later, i have more symptoms, but luckily, most are mild-moderate. its something that i have to deal with and will for the rest of my life, but im ok with that now.

life is a game of poker. you cant control what cards you get but you can control how you play them.

[dtmushroom]

27 and newly diagnosed

I found out when my daughter was 10 months old, i have no family history of this and it was a shock. i still have my days were i just sit and cry by myself. it a scary thing not to how you'll be ten years from now or can i have more kids. it threw my whole life upside down. i have been taking coxpaone for 10months now and feeling the best i can be feeling with the MS. people don't no much about this and they don't understand. lately my year anniversary is coming up and i have been on a rollercoaster rise with emotions. when i found out i went from normal to waking up fully numb from chest down and could barely get out of bed much less take care of my 10 month old. i couldn't write, feed myself,ect... i'm a hairdresser and it scared me that i may never go back to work but after a month and half of being on coxpaone all my symptoms went away and haven't come back, everything went back to normal. i wish you well.

[cranberrysauce]

Hi Brandy!!

I am 29 now but I had my first bout with MS when I was 26 and was diagnosed several months later at 27.

Its not fair. We're in our 20's at a time in our lives when our peers are all healthy, happy and full of energy. Even the best friends and most supportive family can still leave you feeling alone!

For me, finding other MSers to talk to greatly helped. I was lucky (in a weird way) to have one of my best friend's mom's to talk too because she has MS! My BFF is a friend I've met in grad school so I've never met her mom but as soon as she found out my diagnosis her mom immediately called me and gave me a pep talk and a reality check. She's been a great person to call when I'm frustrated.

You are in a tough and confusing period. Starting drugs is stressful, plus side effect, etc. You mentioned the sleeplessness, that's a classic steroid side effect!

For me, I've just decided to come out and tell people about my MS. It was easier to let people know why I was in the hospital. Be prepared to have to explain the disease because many people don't really know what it is. I like to explain it to people cause I don't want them tiptoeing around because they know I'm sick but don't know why.

MS comes in waves and its hard to predict but you'll learn to recognize things. I know when I walk fast cause I'm in a hurry my legs go numb. That's just life. But, I can still jog with no issue. Its just the hurried walk! WEIRD!

But you have caught it early and are starting treatment. That's great news!!! So many people on this board didn't get diagnosed until later but in hindsight realized they've have MS since their 20's.

Meeting other people with MS helps because it makes you realize you'll still have a fulfilling life. Its nice to see and hear people living their lives even with this disease!

Just take some deep breaths and don't panic, MS and stress are not friends! Get through this bout of symptoms, get on drugs and go buy yourself a giant expensive purse to haul around your stash of prescriptions!!!

You've gotten lots of suggestions for support groups so use them. Feel free to email me (its in my profile!). Also, you may start to find MS buddies in unlikely places. I've become facebook friends with my friend's older sister who was diagnosed about a year ago. We message each other whenever we need to vent, its great. Just another perk I've found of sharing my MS with others.

You've come to the right place!!!!!!!

[Brandy_Wine85]

Thank you all so much for the input....it is all greatly appreciated!

This board has been a nice sense of hope for me hearing from all of you and your experiences with this.

Yesterday was the first day I got out of the house since getting out of the hospital for something other than going to a doctors office,and it was nice to feel human again....aside from the constant buzzing,numbness,and constant headaches :/

Accepting and dealing with this news, hasn't been the easiest. I dont know how or when I'll ever get there....but I'm sure in time it will come.The not knowing what will happen and when it's going to happen, scares me the most.I'm the only one in my family to have anything like this,and while they are sympathetic and want to understand, it's hard for me to even try to begin to explain how I feel. Is this normal?