Anyone have MS?? Please help me...

[staci]

I just found out I have white lesions on my brain from an MRI this week (that were not there in an MRI 5 years ago).... I have been having various other symptoms as well for some time (balance/dizziness issues, tingling/sensation loss in my hands and feet, weakness in my limbs and fatigue)...
My GP called me yesterday to say she is very concerned it is MS. I am absolutely freaking out. There are NO neurologists here who are planning on working until after the first of the year, and I am so scared and I dont know what is going on or what to expect. I am 28, I have a preschooler and a 2 year old, and I cant hardly look at them without worrying about the future and the unknown.
If anyone has dealt with this I could sure use some words of wisdom to get me through Christmas and New Years with this hanging over my head. Unfortunately, the only person I know of personally who dealt with this issue passed away before her girls graduated, and I am so scared.
Thanks everyone.

 

[mickeymedic]

check out the website butyoudontlooksick.com/boards

You will find answers, support, ideas and friends. It is a very friendly group. There is a thread specifically for those who are newly diagnosed. And there is a thread specifically for those who have MS. I think you will find it to be a very helpful resource.

Good luck!

 

[chrisw127]

I'm sorry you're going through this. I have a close friend whose wife has it. The only thing I know is that most people will not die from it and have a life expectancy that is just slightly less than average. Also, the disease progresses differently for different people. You may be one of the lucky ones, if you do have it.

You might want to check out some of the MS bloggers out there; just do a google search.

I'm sorry. I hope you get your answers soon.

 

[burberryplaid]

DH's cousin has MS and I can tell you she has a very normal life. She was diagnosed maybe 8 years ago in her mid 20's. Medication has helped immensely. She does have bad days, gets tired more easily than most people, but MS has not stopped her from anything. She got her RN degree and works full time. She has two boys (3 and 7 months)

There is hope. I can tell you that every day they are getting closer to finding a cure. (I am very active with the MS society because of DH's cousin)

Best wishes and take care.

 

[mfd25wife]

I don't have it but my aunt and my boss both do. We also have a 22 yr old at church with it. If you saw my aunt, you would never guess she has it. I think she was diagnosed 5 yrs ago. My boss had his vision affected, but still has vision. It could not be totally corrected. You can tell he has some balance problems only when going up and down stairs. Both give themselves shots, but I think they use different meds. Since the shots started, I think my boss has only had one attack. I don't think my aunt has had any. She does have some nerve pain in her feet and legs, which they have given her medicine for. The lady at church just had a baby. She was in a study for 1.5-2 yrs where she used a different treatment shot. She looks totally healthy. I know it is scary, but they have come a long way with the treatments. If you are diagnosed with it, you will have to make some decisions on which meds you want to go with. All three of them did. I think my aunt picked one that is intramuscular because she does not travel without someone who can help her if needed. I think it is a shot every other day. My boss has to travel some so he picked one that he can do easily since he already does insulin. The every other day one makes a person feel like they have the flu. DA started taking advil before every shot and says over time, it isn't quite as bad.

I assume they will want to do a spinal tap. It's not fun, but not terrible either. I've had one once and they may have me do another soon.

The waiting would be the hard part for me, but try to remember that they have much better treatments than they had before.

 

[staci]

Thanks everyone. I cant express how helpful your words have been. I always know I can come back to the DIS to get help I just wish I was sitting at the base of the castle, watching the parade right now instead of sitting here thinking about all this...

 

[Tosie]

My dh and his sister both have it.

My dh is 43, works a full time job that includes regular traveling. He is a soccer coach and teaches confirmation prep at our church. We travel to WDW about once a year and as long as he doesn't get overheated we have no problems. He does yardwork in the summer and is using the snowblower as I write this. He lives a very, very full life. If you met him, you would NEVER know he has MS. We have 2 very active children that we do everything with.

He has been living with MS since 1997. He takes Beta Seron every other day and it has kept things in check (for the most part). Every blue moon he will suffer an exacerbation but they are usually pretty mild. The one time he was even remotely close to being debilitated was after a WDW trip in 2005 (his 40th birthday trip - Happy Birthday!) He was on IV steroids for about 10 days but got through it with no problems. I should add that he was taking a different drug at the time (Copaxone) that wasn't working for him.

My SIL is a nurse with a 2 year old son. She and her husband have THE most active social life of anyone I've ever known with a toddler. She has successfully taken Copaxone for quite a while now.

Their symptoms vary. My dh started with Optic Neuritis. He has issues with numbness in his hands, iffy balance at times (he's fallen more often than he cares to admit), fatigue and a teensy bit of cognitive difficulty that comes and goes. What I mean is that some mornings he wakes up and just can't remember how to tie his tie. We printed out an instruction sheet from the internet and taped it to the bathroom closet door. Problem solved.

You absolutely must have a sense of humor - it's what has gotten us through. You learn to adapt and do things a little differently - you don't let it take over your life. Both my dh and SIL went through some depression in the beginning but antidepressants are their friend.

Neurologists are not cut from the same mold - find one that specializes in MS even if it means you have to travel to see them. It will make all the difference.

If you have any questions, please feel free to PM me any time. And don't be scared. It's not a death sentence - it's just a bump in the road.

 

[MeghansMommy]

Staci - I'm also being evaluated for MS. I have no lesions, but have had Optic Neuritis 7 times now, and that's a major sign of MS.

Some websites that have helped me:

www.swankmsdiet.org
http://www.nationalmssociety.org/index.aspx

I know the fear you're going through. Hugs to you and prayers for you.

 

[OhhBother]

My DH was diagnosed with MS in 2004. He was 36 at the time. Since his diagnosis, he's taken Avonex injections once a week and hasn't had any problems (other than occasional fatigue and some balance issues).

He's the publisher of a newspaper, just wrote a book, and we travel ALL the time. Trust me when I tell you he can outwalk me at WDW any day of the week.

Being diagnosed was a terribly frightening time. Those days of not knowing were among the worst of our lives. Now, though, we are grateful the diagnosis was MS and not something terminal. I was so worried it was a brain tumor or ALS. MS is something we can LIVE with, and that's the most important thing.

 

[staci]

Tosie... thank you for sharing your story, and your suggestion for finding a good MS neurologist. I am already skeptical of the one here in town just from dealing with their receptionist over the phone, so I was already thinking about calling to get something set up with a specialist at the large university hospital about 30 miles from here. Good luck to your husband and his sister.

Meghan'smommy... good luck to you! It is so scary; I am glad you have no lesions. I will tell you, I started with the balance dizzy issues in 2001, had an MRI in 2002 - no lesions.... so I just dealt with it.... now that other symptoms are showing, the doc wanted another MRI - now there are lesions.... so things can change. If they are inconclusive now with a diagnosis, and in the future something changes, dont be afraid to ask for a new scan. I am actually very grateful for my initial clean MRI though because they were able to compare the one this week to it which helped them understand something was changing...

Again, thanks to everyone for your stories, suggesitons, websites... I am so much calmer this afternoon than I was for the last 24 hours... I have pretty much been a basketcase since yesterday afternoon.

to all of you. May you have a very happy holiday week.

eta: thanks ohhbother for your kind words...

 

[staci]

mickeymedic, just wanted to say I checked out that butyoudontlooksick site and registered. Thanks.

 

[mickeymedic]

mickeymedic, just wanted to say I checked out that butyoudontlooksick site and registered. Thanks.

I will probably see you over there, then. I hope you get the answers you need.

 

[Gagirl69]

Staci, I was diagnosed with MS Oct 21, 2007. My main symptoms started the previous March. I was having severe neck pain for about 2 weeks. Then, I woke up on a saturday morning, jumped out of bed, I noticed my left leg was weak and numb. I didn't feel good. I had errands to run, so I started putting on my makeup. When I went to put on my mascara, I noticed my left arm was weak and very shaky. I thought hmmm. Well, I called Ask a Nurse. Described my symptoms, she said you need to seek immediate medical attention. They thought I'd had a stroke. DH took me to the ER. ER Dr. told me I had a pinched nerve. (this is why I don't trust ER doctors). So, I left the ER thinking Oh, it's only a pinched nerve.
Next morning, I went to my primary care dr. He really didn't know what to think. He got copy of Xray Report. Guess What? No pinched nerve. He referred me to a neurologist. I had a MRI/head...2 lesions...blood work...normal.......spinal tap....elevated proteins. Everything else had been ruled out. So next, I was referred to a MS Specialist. She confirmed my diagnosis. I started Betaserone. I take my shot every other day. I just had my second MRI - no new lesions Yay!!!!
I'm really doing great. I still do have some weakness in my left leg, but only I know it. When I was in my "flare", my symptoms were the left sided numbness and weakness, dizziness, muscle spasms, and fatigue.
I know this is long, but if you want to talk, just PM me. It does help to talk to people who have been through it. Everything will be ok.

 

[disykat]

I have been reading these posts with interest. to everyone dealing with this.

I had an MRI recently due to suspicions of MS, but had no lesions. My issues have been only going on for 6 months and I'm currently diagnosed with an inner ear virus.

It's reassuring to hear about people with this diagnosis who are doing so well.

 

[SueM in MN]

My son in law has MS. He is 26 now. I'm not sure when he was diagnosed, but I believe it was in his late teens. He's doing well.
The biggest thing to know is that drugs are MUCH better than they were before. When I was a nursing student, about all they had for treatment was Prednisone for when people had flares of their MS. There were no drugs to prevent flares, so you pretty much went along until you had a flare, then you took prednisone and besides having MS, you had to deal with Prednisone and getting weaned off of it. Prednisone is still one of the tools for treating flares, but because of the preventive medication, most people have less frequent flares.

Whatever condition someone has, it's best to get a doctor who specializes in that kind of care and who you feel you can work with. The 'working with' part is just as important as the knowledge part. You are in this for the long haul and having a doctor who is your partner in care is going to be best for your health in the long run.

 

[LuvOrlando]

-

 

[staci]

Thank you so much everyone. I am so scared, these have definitely been the worst 3 days of my life, and I am feeling completely lost. But your kind words and personal stories have helped tremendously.

One question though, I have ready about 95% of people get within 7 years of an average life span, but then, for instance, I was on a facebook 'fight ms' group last night, and all the stories sound MUCH MUCH more grim that that- more like I should hope for 5-10 years of quality life at best - which made for a very sleepless, scary night last night. I am so confused as far as all that goes..

Also, no one can see me now until January... my legs and arms are so weak I can barely walk or hold my kids... my chest and back ache, I am so dizzy, I am just barely functioning.... is it okay that they are waiting that long to move forward with everything??? The only other option I see is the ER, and they are morons here too. I have been there twice this fall and been told that I had 1. anxiety and 2. bronchitis. So I really dont think that is the way to go, but I am scared to wait another two weeks... My GP did give me prednisone to help with the tingling so I am on that already....

Thank you so much everyone. I cant say enough about how great of a place the DIS is. For such a large group of people, it is amazing at how much support you can get here. I have had 100 times more compassion from you guys in the last 24 hours than the doctors who dont see a problem with making me wait 3 weeks for definitive answers.

I am just a total wreck. I am trying so hard to not let my kids see that, but my 5 year old is too smart for his own good and he is worried and I hate hate hate that. My 2 year old just keeps asking 'my mommy scared??' over and over... sigh
Thanks for letting me vent and 'talk' things out.... it helps to get my thoughts together.

 

[mickeymedic]

Staci,

MS progresses so differently in each person. I know it's scary to read the stories of others - especially when they are not doing so well. But, medicine is progressing quickly. There are much better drugs now than there were 5-10 years ago. And in another 5-10 years there will be even better drugs and treatments. It would be really unrealistic for me to tell you not to be scared. But I hope you can remain optimisitic.

 

[TheZue]

I think the term quality of life is incredibly subjective. I really debated posting on here but you've already probably looked at the worst case scenarios.

My mom honestly hasn't done well with her disease; but she's had it 31 years now. She could walk until about 10 years ago unless we were going really long distances. She can still talk and her vision is good. But the big thing that really hurt her is she was so in denial about every step of the disease she wouldn't use the tools available. So when she really couldn't walk well instead of accepting it and buying an electric chair to keep her mobile she spent two years falling every day at least once. Then once she got the chair she couldn't easily get dressed on her own but refused to hire people to help. Then when she finally got people to help she didn't get the bare minimum of help she needed and landed in the hospital and is now in a nursing home after years of self neglect. All of this sped up the course of her disease in the last decade. Had she accepted help and continued to do the things she always loved her quality of life would have been much better. It wasn't her inability to walk that made it awful; it was her unwillingness to go to the mall with canes or a chair when it came to that. Instead of being offended by not being dressed all day she was offended at the thought of somebody helping her. She fought the wrong battles and it really negatively impacted her quality of life just as much as her symptoms did.

So my one piece of advice to you is if you are having trouble with anything find out if there are tools to help you, and take advantage! Even if something is just going to make you tired use whatever tools you can to make that job easier. Your energy will be precious, don't waste it on things just to avoid feeling lazy or keeping your pride. Also keep in mind that there are enough tools out there that just because you can't do certain things you can just adjust your ideal of a good quality of life to INCLUDE things like home support, or any medical supplies you may need.

And like everyone has said the drugs now are fantastic. My mom missed out on them really being effective because she slid into secondary progressive just as the interferons were coming out. So hopefully not too many people will follow her path

 

[disneymom3]

Hi Staci--I have MS too. I know how scary it can be to start out with that diagnosis and feel like you have no control over your future. I know I felt like the future I always assumed I had might now be totally gone. I do from time to time post on MSWorld which I think is a site run by Shared Solutions the support for Copaxone. That is the medicine I take. It's an everyday injection which reallys stinks sometimes but it's better than the alternative. Regarding what you read on the websites, I think a lot of us who are doing pretty well end up not posting on those sites too much. When I was first diagnosed I was reading a few sites and then decided I just couldn't do that. They were scaring me too much. And yet the alternative is that I don't have any support group for this. It's hard to know what is best.

I will tell you that I feel great! I did not when I was diagnosed and acutally last summer was rather hard too. Last winter I had a lot of fatigue but things are so much better now. Also, my brother has MS. He used to be really bad...couldn't walk, couldn't finish thoughts without getting confused etc. He started on a new oral med in addition to his Avonex a couple of years ago and the change is phenomenal. He is walking even without a cane most days, he is engaged and his awesome sense of humor is back. He was diagnosed 17 years ago at the age of 40.

My best best advice for you is to go easy on yourself. If you don't have all of your decorations or Christmas baking or whatever done yet, don't do it. Allow yourself to sit and read a book and drink some hot chocolate or tea whenever you need it. Take naps whenever possible. I homeschool my kids so naps during the day were not an option when I was so fatigued. Reading to them while I sat on the couch was. So was taking a four hour nap on both Sat and Sunday when DH was home. Frozen pasta with sauce from a jar and salad from a bag is an easy meal and not bad. Cereal for dinner works sometimes too if it means you don't stand over the hot stove while you are tired.

The hardest thing for me to get used to was placing limits on myself and asking for help when needed. Last summer it was REALLY hot and my kids were in VBS. The church it was at is HUGE and I had to park way away from the door--there were traffic directors who told you where to go. On the third morning, after two days of dropping off and picking up and feeling like I might just die if I had to keep doing that, I broke down and asked the parking guys if I could maybe park closer to the handicapped area and told them I had MS and hte heat was just killing me. I HATED doing that. But you know what? They were so incredibly gracious to me. One of them even went and got my car and brought it to the door for me. It still makes me cry to think of that. Now after being diagnosed for 2 years, I am pretty good at saying, "I just can't do that." I am sure that is part of why I feel so much better.

For the kids....that is so hard. More hugs. Tell them you are not feeling very good and are very tired. They can get that. Then sit on the couch with them or even better if you have a TV in your room, lay in bed, and watch movies together. Read stories. Don't try to figure this out right now, hard as that is. Just BE. You will gain strength from your kids.

Remember, do what you can do and not anymore than that. It's okay. The world will keep turning even if you don't keep up your normal standards. As for not seeing a Dr until Jan, really all they will do to help with symptoms right now is to give you steriods which you already have. Rest, eat healthy food, rest, drink lots of water, and rest some more.

I say all of this because I know it's what I needed to hear.