Just Been Diagnosed

[BeneathTheLies]

Hi everybody!

First things first, i am really glad i found this place. I have been reading through a few threads and found them to be very helping.

I was diagnosed with RRMS on June 16. At first i didn't really want to think about it, and then i had a follow up appt with my neurologist and he started discussing treatments. He has me starting the Capaxone in the next week or so. I don't even know what to think anymore. At first i was scared at the thought that i might never feel my legs again and now i'm terrified of what might happen next. I was literally diagnosed 4 days before my 22nd birthday. I'm trying to keep my spirits up but it gets harder with this weather making me barely functionable.

I just needed to vent a little. It's hard when everyone i know is as confused as i am about what's going on with me. Sorry for rambling. Glad to have found somewhere that people understand.

Thanks,
Heather

[wassons5]

Hello. Glad you found this place. In the few days I have been here, I have learned some new things. It is a great place to be.

I am sorry you are having a though time. We have all been there, Heck I am still there. Trying to come to terms with my diagnosis is really hard for me. I don't know when it will happen, but I hope one day I can accept it.

HUGZ

[floatingurboat]

Hi Heather, I was diagnosed a few months before my 21st birthday last year. Vent away, this is the crappiest birthday present I've ever gotten and I'm sure you feel the same! It's deffinately a hard diagnosis to grasp, and will take some time unfortunately.

[KoKo]

Hi Heather

Welcome!

I'm trying to keep my spirits up but it gets harder with this weather making me barely functionable.

Most of us that are heat intolerant can certainly relate with you. Being zapped of energy and stamina most definitely stinks!

I just needed to vent a little. It's hard when everyone i know is as confused as i am about what's going on with me. Sorry for rambling. Glad to have found somewhere that people understand.

This site is a good place for venting! We're glad you found us too - it's nice to feel understood.

The more you learn about MS, the symptoms, medications, and DMD's, the less overwhelmed you will feel. MS is unpredictable, but you will feel less confused after you gain some knowledge.

Have you been to the National MS Society website yet? It's a great place to learn about MS stuff:

http://www.nationalmssociety.org/abo...sis/index.aspx

If you have questions, just ask and we'll be glad to help if we can.

Hope to see you around!

Take care,
KoKo

[BeneathTheLies]

Thanks everyone. It's been a rough three months but things seem to be calming down at bit.

Ever since my legs went numb back in April and i was diagnosed with Transverse Myelitis i have known that it could be MS. I started doing research after my neuro told me that he didn't know what caused the TM and he wanted to run more test. I really looked into MS because after my first trip to my family doctor and she ordered every blood test under the sun it seemed. They all came back negative and she sent me to a neuro who just happened to be an MS specialist. (i got lucky on that one) He sent me for an MRI of all three sections of my back and thats when they found the TM and started me on 5 days of intervenous solumedrol. Lucky my numbness went away after that but was replaced with an intense pins and needles sensation that pretty much made it impossible to walk more than 10 ft at a time.

After that my neuro sent me for a brain MRI. I'll never forget that call from his nurse asking me to come in for a comsultation because of serveral abnormalities of corcern. That's exactly what she said to. My neuro actually showed me the brain MRI and all of the lesions. I think i counted 8 in total plus one on my spine from the TM. He pretty much said at that point that he had no doubt it was MS but he wanted to do a lumbar tap to be certain. That was certainly terrifying for me. Thank god i had this very sweet lady doing mine. Obviously the results came back with what he was expecting bacuase i week after i got a call telling me the it was a definitely diagnosis of MS.

I know it's crazy but i'm actually going down to Johns Hopkins on Aug 10 for a second opinion. I know i'm crazy for going but my mom's insistent that we have a second opinion. At this point i just want life to go back to normal before i lose my mind over all this.

thanks,
Heather

[KoKo]

Heather

After that my neuro sent me for a brain MRI. I'll never forget that call from his nurse asking me to come in for a comsultation because of serveral abnormalities of corcern. That's exactly what she said to. My neuro actually showed me the brain MRI and all of the lesions. I think i counted 8 in total plus one on my spine from the TM. He pretty much said at that point that he had no doubt it was MS but he wanted to do a lumbar tap to be certain. That was certainly terrifying for me. Thank god i had this very sweet lady doing mine. Obviously the results came back with what he was expecting bacuase i week after i got a call telling me the it was a definitely diagnosis of MS.

I know it's crazy but i'm actually going down to Johns Hopkins on Aug 10 for a second opinion. I know i'm crazy for going but my mom's insistent that we have a second opinion. At this point i just want life to go back to normal before i lose my mind over all this.

There is nothing wrong with getting a second opinion.

It sounds like you have met the criteria for an MS diagnosis, with brain lesions, spine lesions, and positive LP.

Is the reason for the second opinion because you (or your Mom) think it could be something else, or do you just want to be absolutely sure that it is MS?

Take care,
KoKo

[BeneathTheLies]

Koko i think my mom just wants to be a hundred percent certain. I'm already convinced from everything i've seen and felt. The MS diagnosis really made sense to me. I've always had alot of health issues but i never understood why until now. I don't necessarily want to get a second opinion but i can understand where my mom is coming from. I don't think this other neuro is going to come to another conclusion, so I plan on starting my Copaxone as soon as it arrives with or without a second opinion. I'm trying very hard to quit smoking to and get as healthy as i can while i'm still able to. Anything i can do to make this less stressful and painful i'm trying to do.

thanks,
Heather

[Temagami]

BTL,

We are on a very similar timeline though I am older than you- old enough to be your mom. I had the TM, did the steroid IV, and got a 2nd opinion from Johns Hopkins- in the Transverse Myelitis Center- a Dr. J. Ratchford. He concurred with the local neuro. It was a crappy day. The good part of that day was I had connected with a young teacher in Baltimore who has a blog. She has had MS since a bit younger than you and she has managed to live by herself, have a job, and keep her sense of humor. She faces a lot of physical struggles, but keeps on going. Remember, she got dx´d when there weren´t as many drug options.

I also started Copaxone. I am a BIG needle wuss, but after a very painful arm shot, I have learned to self-inject manually as it hurts less than the autoinjector. I use an over the counter antihistamine to help with the itch at the injection site. I take the antihistamine at night right before the shot. I take an icepack to bed with me- one from the copaxone cooler that the meds are shipped in.

I have made huge changes to my diet: no gluten, no dairy and just recently no eggs. The buzzing dropped A LOT when I went no dairy- within 4 days.

Check out the sites at the Rocky Mountain MS center- especially the link on CAMs, google Ashton Embry- his son got MS, he is a scientist in another field and he went whole hog in researching it, and check out the UK site for MS.

The woman in Baltimore gave me two nuggets of really good advice and I´ll share one with you: don´t let this stop you from your dreams. I had plans to start a Masters degree in Spain this summer- and here I am with only 4 days of class to go. I´m hoping I can do phase II next summer.

Thinking of you,
Temagami

[BeneathTheLies]

Temagami- I go to Johns Hopkins on Aug 10 to see Dr Drechman. I think he his technically the head of neurology but he was my Poppop's neuro until he passed away. Not to be annoying, but how far did your TM progress? I didn't have any bowel problems with it but i was numb from about my hips down and after the IV steroids i was super tingly for about 3 months. That just finally went away but the area of my back that had the inflammation still has alot of pain. I've noticed also that i have alot of muscle spasms in my back and legs now.

I don't think i will go with that strict of a diet. I was lactose intolerant for years until i had that IV steroid so i have been an ice creamaholic for the last couple months. I have been eating healthier in general and i'm looking into getting a gym membership somewhere with a pool.(I found that even with numb or tingly legs i could still swim. go figure) I also plan on taking some yoga classes. I always feel really tense and achy so maybe the yoga will help with that.

All in all, i'm just so confused about everything. I wish i knew what tomorrow will bring but i never know if it will be a good day or a bad day. Another thing is, how do i know if i'm done relapsing? The major symptoms like numbness and tingling have gone away but as i said i'm still having spasms and alot of cog fog (i read that on here somewhere and thought it was a great term for it). I like to think i'm in the remission stage but if i am i hate to think that this is how i'll be from now on.

Anywho, this is the Tell About Yourself section so i might as well do that. I am 22 years old and i live in southern PA. I have a fiance and two cats that are pretty much my kids. I work full-time as an administrative assistant and i hope to continue to do so for many, many years to come. I do enjoy my job even if my boss can be a pain in the a** some days.

Just another question i have. How do i get my fiance to understand what the future with me might be like? I don't want him to think i no longer want to be with him because that is the exact opposite. If anything he has been my rock for the past few months. I don't want to scare him away but i want him to be prepared for what might happen. I have no idea if i will be a worse case scenario or not. I thought about having him read some of the things on here but i know he has the attention span of a goldfish some days. If anyone has some advice that would be great.

Thanks,
Heather

[MyGirlsMom]

Hi BTL! It sounds like you are handling this all quite well. IMO, a second opinion is always good and it can be helpful to get different points of view from different neurologists. I have seen several different neuros over the past couple of years, and it seems I continue to learn more about MS and my MS from each of them!

Regarding the situation with your fiance. I too freak out about my future, but what I have realized is the NO ONE knows what their future is. Our uncertainty is now right in our face because of our MS dx, but all we really have...any of us...is right now...just this moment we are in. Sometimes when I start freaking out about the future, I think about "that I could get on the highway, have a major auto wreck and end up in a wheelchair and it wouldn't have absolutely anything to do with MS!" Okay, that is somewhat negative, but it is my way of reminding myself that NO ONE knows the future. Sure, your MS could get worse, or it might not, but "something" could happen to anyone. (Also, MS is always changing, so when my pain is bad, I try to remember that just because I have it today, doesn't mean that it will always be there. Some pain I used to have I no longer have....I remain hopeful that over time, my pain will subside.)

Thus, the blessing for me in MS (which I never thought I would say) is that I tend to live more in the moment and feel more gratitude for the moment I am in and try to let the future take care of itself.

Best wishes with that...I think I will still be continuing to work on that for awhile!

[webbles 989898]

One thing I have learned in the last 15 years is that you never know what tomorrow will bring. You may have a new issue that will come and go or it may stay. I call it my new normal, and you just get used to it and deal with the best way you can. Hang in there.

[BeneathTheLies]

the second opinion

So i went down to Johns Hopkins for a second opinion last week. The good news, we're not back at square one and he agrees with my neuro's dx of RRMS. The bad news is he thinks i have rheumetoid arthritis and possibly another autoimmune disease. Apparently having one isn't enough. Ugh!!!

I'm not sure what to think now. I have no idea which pain is caused by what. (ie joint pain vs muscle tension) If my life hadn't gotten confusing enough with the original dx, now it certainly is. I was just starting to get a handle on this whole MS and now it's like another curve ball is being thrown my way. I know it's not the end of the world but isn't having an incurable disease enough?

I feel like i'm whining right now which is probably true but i had get it out somehow and bf doesn't quite understand how frustrated i am at this situation. I have MS so now i take a shot everyday that burns like crazy and leaves welt like lumps. If all the bloodwork comes back and i have RA on top that i'm terrified of what it'll be like as i get older. It makes me want to pull my hair out and scream bloody murder.

And just because i want to end this post on a lighter note i'll tell about this neuro at Hopkins. Other than being incredibly slow, this guy was amazing at his job. In all the times i've seen my neuro in the last 4 months he has never been as thorough as this dr. He put me through the ringer testing everything, the muscle strength was the worst. I really felt that he listened to everything i had to say and contemplated it before telling me what he thought.

He offered to refer to at neuro at the MS Center at Hopkins but that's over an hour drive to baltimore opposed to the 15 minutes it takes to get to my neuro both from home and work. I'm not so patiently waiting for the results of my bloodwork and tomorrow will be a week so i hope to hear something. I'm hoping for good news but i'm not getting my hopes too high. Don't need to come crashing down again. I actually kind of got my hopes up going down there. I was naive enough to think it might have just been a fluke and it wasn't MS. In the back of my head i knew it would only confirm everything.

Sorry for kind of rambling. You guys are keeping me sane right now.

Thanks again,
Heather

[Iceskater]

"How do i get my fiance to understand what the future with me might be like? I don't want him to think i no longer want to be with him because that is the exact opposite. If anything he has been my rock for the past few months. I don't want to scare him away but i want him to be prepared for what might happen"

First things first. My finance needed me to understand about MS. My financee was dignosed about 6 months before our wedding. We are now married. MS is about living life. My husband and I dont think about what will happen long term. I know the road to understanding is very scary. I was there .... I was in the same shoes your finance was in a year ago almost.... First thing is education.... Second you dont have to let your MS dictate your life ... just live. Enjoy the time. Yes my husband takes shots but it doesnt define who he is as a person. I will never let his MS stop him from anything. Please dont let it stop you either.