Diagnosis Confirmed - MS it is

[mteynor]

Hi - I'm 32 with a 16 month old son and received confirmation of my MS about a month ago. It started with optic neuritis in December, a series of tested and different neuros and then meeting with an MS specialist at Ohio State last month who confirmed the diagnosis after reviewing my MRI and lumbar puncture results. I was really frustrated that it took so long but after reading how long many of you have waited on this site, I am feeling better about that.

I'm really struggling with it now b/c I don't know anyone that has MS and I feel like every time I try to go online to do research, it just overwhelms and saddens me. When I first heard it could be MS in December, I was relieved b/c I was scared to death that my MRI was going to show a brain tumor or something causing my vision problems. I felt like I could handle MS since it seems it rarely kills someone. Now that it's been confirmed, I just feel so sad and so scared. I hate not knowing if it'll be 10 years or 10 days until another attack and every little tingle I have just consumes me. I'm scared to death that I won't be able to pick up and hold my son. I've looked into a self-help group in my area and am planning on attending a meeting next month so hopefully, that helps. There's so much to say but I won't bore you for now. I just wanted to reach out and join the group. I'm really happy with the positive attitudes I've seen on here.

[CasinoKathy]

Welcome to MSWorld mteynor! Glad you found this site. I agree, it is awesome! Sorry for your dx, but now you know what it is that was causing your sx.

I know it's not easy not to think of what the future may bring, but try not to dwell on the what ifs. That can drive you bonkers and stress can make your sx worse.

Enjoy your son and live life as best you can. The quality might not be the same as in the past, but you will get thru it. A good support system of family and friends is so import ant too. They might not always understand what your going thru, but your new friends here DO!!

Come here often for comfort and advice, or better yet, offer some to others! I know I need a shoulder to cry on sometime!!

Again welcome aboard!! Kathy

[hunterd]

welcome!!!!!!! sorry you`re here though. any questions, ask. the only stupid questions are the ones not asked. all kinds of info here. we`ll help you thru it.

dave

[cosake]

Welcome !

Hi and welcome to the boards. Sorry you need to be here, but as you can tell, it is a wonderful place if you need it. There is lots of information, advice, support and real-life experience here.

I had ON in Jan-2010 and was diagnosed as MS-CIS based on MRI and symptoms. Boy, was that a shock ! I wanted to know more before I started a treatment, so had an LP in June that confirmed MS antibodies.

I am 39 and have an 11 1/2 yr old son and 14 yr old son.

I will start Betaseron in 3 weeks.

I lived the first few months after initial diagnosis as if everything was in limbo. I felt like I couldn't make long-term plans or commitments, etc. because I didn't know what was going on or what might happen. Finally, I realized I just have to take care of myself as best I can and live my life as normally as I can for as long as I can.

I am taking Vit D and make sure to get plenty of rest (which I did before, but even more now), and started walking for exercise. I keep track of any symptoms that I have, but so far they have just been annoying rather than anything that affects how I live my everyday life.

I haven't yet gone through a grieving process, but I'm sure that I will at some point. I'm generally a laid-back, positive person, so I guess that has helped with this. And I am fortunate that besides the ON, I have mild symptoms.

It's good that you are reaching out. Don't let the MS consume you for too long. What types of symptoms do you have besides the ON ?

[mteynor]

Ah, I'm so glad I found this already!

One of the things that is frustrating to me is that I don't know if I have symptoms or not (other than the ON). My hands tingle when I get up in the a.m. and then goes away which they don't necessarily think is an MS thing but probably carpal tunnel, especially b/c it's not every day and it goes away after I move my arm (started when I was pregnant). My feet sometimes tingle but again, usually after I've been walking in heels. I had no real issues when the neuro put me through all of his tests at his office. That's basically it. So logically, my head tells me that those are possibly not related to my MS but of course, I don't know that for sure. Oh, my husband and I have also been thinking that my fatigue is not normal, after talking to our neuro. But again, that comes and goes and I've had it for years.

So - I'm blessed that other than the ON, I really don't have any significant issues. Because of that and the fact that we're going through fertility treatments to try to have another baby, my neuro wants to wait to start treatment (other than taking Vit D supplements) until we either have another baby or give up. Have you guys heard or been through similar - that you shouldn't be on treatment if you're pregnant?

[cosake]

You are fortunate that you seem to have mild symptoms so far. Any of these "odd" things that happen should get marked into a symptom log for you to have on hand for your next appt., and/or to have in the future to refer back to if you need to determine if a symptom has changed in severity, frequency, etc. I've also read that keeping track of symptoms can be important documentation to have in the future in the event that you need to file for disability.

I do sleep alot more than most people I know, and have had a few episodes of true fatigue. I also have bladder issues (frequency at night in particular) that I always chalked up to getting older that I now know are probably MS-related.

You may also want to look up some websites that list symptoms and make some comparisons.

I didn't find out until a few months ago about my MS, so my kids are already 11 1/2 and 14 and I can't answer your pregnancy question. You may want to look in some of the other forums, like "Medication" because I know I've seen posts about pregnancy and meds.

[mteynor]

cosake - What do you consider to be a true episode of fatigue? When my neuro asked me about it, he couldn't really define what he considered to be excessive fatigue. My hubby and I just think it's more than most people (like you) so it's probably related...or maybe I'm just really lazy!

[KoKo]

Hello mteynor

Welcome to the MS World Forums!

Glad you found us here. I'm sure you will benefit from the information and support that you'll find here.

You are not alone anymore because now you've met a few people who have MS too (we may be just cyber-friends, but there's a whole bunch of us who really do understand)

Take care,
KoKo

[cosake]

"True" Fatigue

Hi,

I consider "true" fatigue to be when you are so physically and mentally exhausted that you can barely function.

I had one episode in particular that hit me on the way to pick kids up at school in the afternoon. I suddenly found myself almost unable to drive I was so exhausted, couldn't remember where I was supposed to be going and almost had to pull over. It hit so quickly I had no idea what was going on. It lasted about 3 or 4 hours and then I was just really tired.

This is what I consider to be fatigue, but perhaps someone else has a better definition or can tell me if that is really fatigue or not.

[hunterd]

the symptoms are all different for everyone. and not only are they different, but the intensity varies also. the tingeling in the fingers sounds like ct, been there, done that, mine was like that too. my advice, not usually more than ramblings, is to keep a journal. include any and all irregularaties(sp) and show the dr. hope that helps some. sorry i was so short the other day, i had to leave. good luck

dave

[juliebug]

MS x 34 years - There IS hope

Hello mteynor - I am sorry for your diagnosis. I'm not an average MS patient. In fact, until about a year ago, my neurologist said that I was one of his most fortunate MS patients) I have had MS since I was 14 (1976) but wasn't diagnosed until years later. They didn't have much diagnostic equipment in 1976. I know that you are probably scared silly with a small child in tow to worry about and that is understandable. But I want you to know that everything may just be FINE. My lovely daughter just graduated from college and while I did have to battle fatigue most of my life (naps help), most of the time I've had a fairly normal life. I could not work full-time and now I'm to the point where I really can't work much at all. I have a family down the road whose 2 children (who take naps!!! need care 1 day a week and that's really all I do.

Please don't think that this diagnosis is necessarily the end of the good times. While MS has cost me a career and some other opportunities that I might have had otherwise, I know that I am one of the luckier ones that you will see at this site. I am SO grateful to have had the life I've had so far and you may have that life, too. You just never know. The uncertainty is a bit scary, especially when you are so young, but worrying about it doesn't help anything, especially MS. Take care of yourself!