Newly Diagnosed here

Did your MS signs/symptoms and/or frequency seem to appear more after you were diagnosed? I was just recently diagnosed with MS, after being diagnosed with optic neuritis and having two lesions on both my brain and spinal MRI. At that time, I could not think of any other clinical signs. Now that I have been diagnosed, I experience more fatigue, have shock like sensations all over my back, and now have numbness, tingling in my arms and hands. It is possible that I had those before, but just never really aware? Now that there could be an explaination, maybe I am taking note? Or is this all in my head and am making thinking these symptoms up?!?! Am I alone in thinking this?

I am so glad to have found a forum. I feel lost in this. You can tell your family, but they see that you're just the same on the outside, so they just don't understand what's going on with the inside when you tell them. I feel like they think that I am making these feelings/sensations up.

I am a 33 yr old female. I have just decided to get on Rebif, after a long drawn out, wether to do Rebif or Copaxone, flip a coin type of final decision. Today I got the call from LifeLines, and they are doing the insurance check which will take about a week.

I have so many questions and concerns. I'm so scared. I feel like my life has just blind sided me. My husband and I have a three year old daughter. We had been trying for a brother/sister for her for eight months when I had got the optic neuritis. We put it all on hold until we found out what is going on with me. Now, knowing that there is a chance to pass this on, I have to ask...how can I do that knowingly, that there is a percentage that I can pass it on? I know the odds are not in that favor, but there are odds. I want to scream....SCREAM!!!

[bubbles_04]

Hi there,

First of all, you are going to be ok, MS will not kill you. I think its likely the stress of knowing what’s going on with you has make you feel more MS like symptoms (stress is one of my triggers) and I agree the awareness prob plays a part in this too. I feel a lot more since MS was put on the table but I think its partly awareness of knowing what you have. I used to think my lhermitte's sign was a sign that I had damaged my back because I felt it there. I did not even think about MS.

Its great that you picked a treatment, I've picked copaxone and waiting to hear from shared solutions. Looks like we will start treatment around the same time.

On the baby making, I'm 28 and childless and I really want to have children so maybe that’s the reason I think I will have kids but I would like to share my thoughts on it too. No one in my family has MS, no history of it at all. Because I have it the chances have increased for all of my siblings too.

I personally think we "researchers, doctors, everyone" don't know enough about the cause of MS. It is likely there is a genetic aspect BUT that does not mean every case is that way. For example I believe only 2% of ALS cases are genetically linked, that maybe the same for MS. After all 1 in 50 is not a high chance and that is likely due to not all cases being genetic in nature. This is my own personal thinking though. Also even if the reason I have MS was my mum’s or dads fault I wouldn't not want to be born! I'm glad they had me :) But again this is just my personal feeling.

Give it time to allow the MS diagnosis to sink in before you rush ahead with any family plans. Wishing you the best!

Kat

[saucygrl]

I was diagnosed after a flare-up so my symptoms were definitely worse.  They have gotten better with time, but I think I am a bit more aware of what's going on with my body.  Before I knew there were times I didn't feel good and now I'm more aware of why I don't feel good.  

It's funny (ironic funny) that you mention family reactions.  My husband seems more empathetic and understands when I'm really tired.  I think the whole process really scared him this time because I was affected so much worse than before.  My 20 year old daughter on the other hand, said some really hurtful things to me this weekend.  She accused me of making up symptoms because I can't keep up with her right now.  Basically I felt like she was accusing me of being lazy.  

This forum has been great for me because other people are experiencing some of the same things I am and that helps me to know it isn't all in my head.  People here truly understand what's going on.

The medication choice was a toss up for me too.  I ended up with Copaxone, but saw a new neurologist today and she said she would have preferred I was on Rebif.  I'm going to have another MRI in September to see if she thinks it's the right medication for me.  So far I don't have any complaints about it.  

My three kids are ages 15, 17, and 20.  I also worry that I might pass MS on to one of them.  I'm afraid I won't be much help on that issue.  There are people here with younger children and hopefully one of them can help you there.  My grandfather also had MS, but the medications are much better now than they were 30+ years ago.

Please remember too that you were just recently diagnosed.  It's a lot of information to take in.  I kind of felt relieved because I finally new what had been going on for the past 6 years.  At the same time, I felt as though someone had pulled a carpet out from under me and threw my life as I knew it up in the air.  Hang in there and chat with people here.  It really helps!

Good luck and God bless!!
Chris

[bubbles_04]

Sorry its not 2% of ALS its 5% of ALS. The other 95% they do not know the cause. The 2% ALS is related to the disease I work on.

[supermum_ms]

You have actually brought up a thought i've had going around in my head that i've wanted to bring up on the forum but was wary of upsetting people if they didn't understand where i was coming from, so thank you for letting me have this opportunity to be bold and speak my mind lol.

It is a known theory but little researched concept, that a person newly dx with a disease can experience a worsening of their disease sx, not due to their disease but due to the deterioration of their mental health after dx. This is only a theory, the stats are just not there and it may never get fully researched but I do think its something everyone should be aware of anyway.

To me logically it could simply be the same as being conciously more aware of your bodies tells and its connection to the dx disease. In the same way that once your pregnant you notice more pregnant women every where you go. Its not that there are suddenly more pregrant women every where, its just that your more aware of them because of your circumstances.

I'm thinking that maybe the only way to know if the increase of sx, is familiarity of the disease or psychological is how you respond, if your freaking out then there is the possibility its psychological. If your listening to your bodies tells and looking after your self better then I doubt its psycholgical, because being more aware of your sx is proving to be better for you, than not. Just my two cents on the subject :o)    

In relation to passing on MS if you have children, I personally dont think you can look at the minimul genetic connection seen in MS, the same way you do with other diseases or conditions that have higher genetic probabilities. I have 2 kids, 11 years apart, the eldest had multiple dx learning disabilities and to be honest she was hard work and i didn't know if I could handle another one like her. Well i didn't get another one like her, multiply it a couple of hundred times and that is the bundle of joy we know our son to be. lol

Both children have Asperger's, both my brothers have Asperger's and i'd bet my house that my grandad had Asperger's too, so for us Autism is genetic and yet none have any DNA abnormalities or the suspected genetic markers for Autism and yet they all do. So from my perspective you just cant look at bringing children into the world with fear of disabilities or MS because there are NO gaurantees of anything, even if you have ZERO family history or a bucket load.

Please dont give up your dreams!

Cheers.......JJ  

[tingletingle]

Hello Luckyone,

I love the positive screen name but am so very sorry for the misery and upheaval you are experiencing that all comes from being diagnosed with MS.

MS is a disease of weakness with weird symptoms that unfortunately most of the time can't be seen on the outside. So it will take time to adjust to the very hurtful comments made by ignorant people. You can take comfort that MS is a well recognised disease with well documented symptoms so you don't need to feel bad in any way at 'not keeping up'.

When the disease is active and demylination is occuring yes you do experience new symptoms, exacerabation of symptoms and generally feel unwell.

Yes, initially, the changes to our bodies is frightening isn't it? I used to lay in bed numb and tingly all over wondering if this nightmare would ever end. Would I ever feel normal again? Now, I have come to accept the symptoms as part of me and can live with the new me but of course it does take time. I've had 11 months to get used to it.

I feel your pain at the hightened possiblity of our kids developing MS through our genes. Studies suggest that kids of people with MS have a 30 - 40 times chance of contracting the disease. Here is a link to my research guru http://www.overcomingmultiplesclerosis.org/Recovery-Program/MS-in-Family-Members/

Being diagnosed is an absolutel emotional rollercoaster so feel free to scream away. You have found a very supportive community to lean on during this difficult time. Certainly I owe this community a huge debt of gratitude for the help and support they provided to me.

All my very best to you
Blessings
Alex

[Lulu54]

Yes!  Keep in mind our bodies are incredibly noisy machines and we normally don't stop to listen to them and all the outside sound interferes with us hearing them, anyway.

When you start paying close attn to your body signals, there are lots of things we pick up. We can hear our heart, we can feel all the twitches, the intestine is a good one for feeling like mini spasms at times, our ears might be ringing or picking up the whooshing sound of blood coursing in our veins.  This list can go on and on.

When we first get a dx of MS, there is good reason to turn up the volume and tune into our body's sounds and signals.  Eventually this hyper-awareness settles down and you will be able to sort what is usual and what is new.  

I know because I drove my MSologist crazy with this problem for a while until he gave me an analogy for it that I wrote about in my journal. You can see that at

http://www.medhelp.org/user_journals/show/68827/Things-that-go-bump-in-the-night

I hope this all helps you to relax and settle into this new rhythm.

[HVAC]

There is an old saying "If you are a hammer everything is a nail"

Alex

[oneluckyone]

Thank you all so much. It is real meaningful to me that you all took time to post your experiences and words of wisdom. I have taken in so much from each of your posts. I want you to know how much it is appreciated. Thank you again.

[Jacksmom516]

Navigating your course after a dx like  ours is not easy -  I was dx;d in December and at times still say why me, what did I do wrong, and want to scream.  It is natural that you feel that way sometimes.  As far as sx's go you might just be noticing them more now that you know the cause.  I know I did.  Like Lulu said every tingle spasm, muscle twitch you notice because in the back of your mind you think oh no what is this now.  You are super aware of your body right now.  

You are going to have good days and bad days.  There are days when I don't even think about being sick and then days I wake up and do not want to get out of bed.  

This forum is the best thing I found to deal with this disease.  While everyones MS is different - we all have it and there is usually someone who can add insight to what you are feeling or experiencing.

Your family is your best support system, but you are right sometimes they just don't "get it"  especially if you look fine.  I walk with a cane so my MS is somewhat apparent but for those who don't it is hard for people to understand that you truly do have this disease,.  \

Hang in there - take it all day by day and give yourself the breaks you need to absorb all of this.  It takes time.  As it has been said many times here you are experiencing a new normal in your life not good or bad just different!

Lots of Hugs
Tracy

[oneluckyone]

It is taking some getting used to, and it is hard to understand how one can go from healthy to (okay, there is no other word I can think of here other than) disabled. For instance the optic neuritis. I was completely great, until one morning I woke up and there is this big blurr and had difficulty seeing out of the eye. Then the other day when I was planting flowers, my hands got extremely weak and then from my elbows to my fingertips were tingly and numblike, and I could not finish. It lasted for a few days. It is certainly frustrating. Talk about mood change. My little girl is asking me why my hands are hurting, why I can't finish, why do I feel this way. Well, honey, I don't know how to explain it. But, why mommy? Okay, you get the picture. This is certainly an emotional roller coaster. And, to top of more worries, I worry about how I am going to react to the Rebif. Will I get a relapse of my depression, will I be extremely fatigued, will I get the flu like symptoms. Will I be a lucky one where symptoms are managed by pre-medicating or will I be like others who still feel sick even after years of taking it?! No wonder my mind has gone tickers! It keeps getting pulled in all different directions.

[Guitar_grrrl]

Hi, and welcome!  I've been diagnosed 3 years, now, and I'm still trying to wrap my brain around this!

Uncertainty is the hallmark of this MeSsy disease.  When we worry about the "what ifs", we're trying to take control of something we can't possibly control.  Worry can paralyze our lives, and affect those closest to us.

So here's what I do: One day at a time (or 5 minutes, or 20 minutes).  Staying in the present, and being present for your family helps.  If my tremors, or fatigue or (insert symptom here) get in the way, I figure out a way to work around it.

Be flexible, and have a "plan B" for any adventures you take on, and yes, be adventurous!

We almost always hear "but you look so good", and so many of our symptoms aren't readily noticeable.  For those closest to me, I've educated them that even when I look terrific, I don't always feel that way.  For those on the street, or at work, I just say, "thank you", and let it go.

You'll have good days and bad days.  Take them as they come.  Allow yourself to grieve, but also allow yourself to have fun.  Keep active, and exercise - that's so good for us.

Big hugs to you, and sending good thoughts...

[bubbles_04]

I can relate with everything you are saying here. My MS is unnoticable from the outside and I don't have children to I need to explain it too but I still feel very much like you do. Just yesterday I was saying to my husband, I just can't believe it!! Why me?? I think often about what I must have done to cause my MS. I think about my MS all the time. It's really unhealthy and I know it but I feel like a train hit me and I didn't even see it coming. I think you most likely feel this too. I also think its so unfair, I'm so young in the beginnings of my career and thinking about starting a family and BAM I'm hit with the MS stick. However, I do think I'm going to be ok in the end.

I worry about taking a DMD too, I worry about side effects and it not working and silly things like traveling with needles :). My point here is you are not alone in how you are feeling and when I started to go though all these emotions this forum was amazing so I really hope having somewhere to come and talk about how you feel helps you. You will come out the other side of Dx and see that life goes on, you had this little beast before Dx. nothing really changed just your awareness of your disease. Thats what I think to myself :) I hope your symptoms get better soon too. Thinking of you.  

[Jacksmom516]

I completely hear where you are coming from.  Your mind goes a mile a minute with all the thoughts on how you are going to handle all of this especially with a small child but you will.  You manage to get thru every day somehow and while some are better than others they are all doable!  

I was one of the lucky ones - I am on Avonex not Rebif but never got the flu like symptoms, a mild headache and that is it and now that doesnt happen either - been on it for 3 months.

Hang in there, share your fears and joys and anything else you are feeling here and with your family -  there are lots of people who can and want to help you move thru this and learn how to handle the new normal in your life.  Some you see everyday and those of  us out here in cyber land!

Take care

Tracy