This Is MS Multiple Sclerosis Knowledge & Support Community

My name is Cindy and was diagnosed with RRMS in early 2002.
Have been reading this wonderful forum for several months... this is my first post. Just turned 51, I am in North Carolina, originally from CA, USA.
At this stage, there is no pain but my mobility is really bad.
I'm not sure what I want to say--other than I just have to get started and actually reach out/connect this time...
The bottom line, for me, is that I just feel so lost, so very alone and scared, scared, scared. I'm so used to being independent, etc., that I make it very hard for the sparse few friends left who want and do help. I guess my life has changed so dramatically (like everyone else) and, given I am the 'Queen' of denial... have not been pro-active at all. Given I had to think back to the year I was diagnosed, it's amazing how quickly time has passed.
I am clear that I have to seriously wake up and deal with my MS. Anyone who can help me sort some stuff out... clarify and figure out what action I need to be taking -- or willing to share or connect with me -- is most welcome and deeply appreciated!

Hi Cindy,

I'm Jack and I to live in North Carolina, Charlotte to be exact. I'm 46 and was diagnosed in January 2007 with RRMS.

First, you are not alone. This site will put you in touch with many people just like you and me. Keep on reading and posting here and you will make friends, you will laugh - and cry - but mostly you will learn that just about everything that is happening to you has already happened to somebody. People here are more than willing to share experiences, both the good and the bad, their knowledge, and their humor.

Second, since you are in NC, I recommend contacting the Mid-Atlantic Chapter of the National Multiple Sclerosis Society, which is here in Charlotte. Just Google NMSS and look for the chapter links. They also have monthly support groups that you can attend in person. I go to one of them.

Third, get yourself to a good nuerologist and start treatment with the diease modifying drugs. If money is a problem all the manufactures have programs to help pay the cost.

Take care. Talk to you soon.


Jack

Thanks Jack.
I have another MRI scheduled at UNC (hospital) in next month or so. Also seeing neuro there.
Just really appreciate your words... and in Charlotte too!
Hope we can stay in touch

Cindy

Hi Cindy,

I spent a number of years in denial as well. I started a blog a few years ago and then started hearing from people with MS. I was encouraged to go back to the neuro clinic and pick up where I had left off. I ended up on Tysabri and so far it has been good for me. I am glad that I am in treatment, and I feel like maybe the progression will slow down from here. I hope so.

I encourage you to get out of the denail and face things. It can really make things better.

Trish

Thanks Trish. Very nice to hear from you and that denial isn't just my way of dealing with...

Glad 'Tysabri' is good med for you. Not heard of it so did some reading and, like anything else I 'spose, has it's risks eh? But want to mention to doctor when I see her in couple of weeks. Did you have to pass any special requirements (to make sure your body would handle it successfully) and how has it helped...?

Take care,
C

yeah, I think all MS meds have their risks. In my opinion, you have to educate yourself, and then go with your gut feeling.

The deal with Tysabri generally is that you are supposed to be RRMS, and you need to have unsuccessfully tried two other MS meds. I think the best thing to do is find the right neurologist for you (shop around if possible). That person can help you come to a good decision for you. You may decide you don't want any of the 'western' treatments and instead do some lifestyle things. Different things work for different people, as far as I can tell.

I was having a few major exacerbations a year. I've been on T since last August and have not had one. I appreciate the energy I've had since I've started. I don't know how long I will get to stay on it, or if I'll develop issues but so far it has appeared to be a good decision for me. I did not have success with Rebif, Copaxone or Novantrone. Then I bailed out of the world of neurologists for a few years before taking a deep breath and coming back.

If you are suffering from the fallout of MS, you can do some things to help it. Get out there are find them! One thing that really helped me was when my neuro clinic gave me an antibiotic that I could use when I needed to prevent my bladder infections. That seriously improved my life!

Trish

Cindy,

Also, you no doubt notice that some MS treatments are controversial. There's certainly an anti-Tysabri sentiment around. It's important to make your own decision. I think the calculation of risk is something one can only do for themselves.

I have stayed away from MS boards during the 10 years I've been dx'ed. There is a lot of negativity, and I am too susceptible to it . What I've been looking for now is a place where I can find other Tysabri users who are willing to talk about their experiences without feeling like they have to be evangelically "pro-Tysabri" or feel like they have to watch for the anti-T people.

Unsuccessful so far.

Trish

Hey Cindy

Good to hear from you. It may make you feel better to know that people from as far away as Africa share your experiences. This disease makes us all related!
Even having different opinions and arguing about it is a positive thing - who else has the credibility to do this with you, other than a fellow ms'r or someone close to one?
I am so glad that you decided to take the positive step of engaging with others on this site - the folks are great, and are very willing to share their vast knowledge and experience - or even just reassure you when you most need it. They understand you.

I have had it since 1999, but managed to successfully ignore it and the kinda mild relapses I had (denial, big time - I had no need for information because this was not going to seriously affect my life), right up until 2006...Then it slapped me in the face so badly, I could pretend I was 'normal' no longer. In my defence, I was diagnosed with cancer in late 1997, and I just could not face another serious illness so soon, so young! I wanted a life again, not to think about dying or becoming handicapped in someway...

I have been on Avonex for just over a year - I won't pretend that it is a wlk in the park, but it is not so bad either. I am 43 and have 2 young children, so feel I must do something to at least preserve the funtionality I still have....I have motor weakness, muscle spasms, and loss of sensation in my entire rt arm/hand and leg/foot, so mobility and fine motor skills are an issue, also lots of neuropathic pain, and severe L'Hermittes - big lesion at c3-c4 has been causing major problems for over a year now - I don't think it will get any better now, so I am at my current peak.

I wrote the above so you would know that you are not alone - I really truly know what it is to feel scared. That fear drove me to start Avonex and to begin a basic supplementation regimen. I also have a good relationship with my neuropsychologist and my oncologist, who are always there for me.
My neuro is the type who thinks that you should snap out of it and just get on with things - stiff upper lip and no sympathy! He makes me drive into his office, gives me a gram of steroids IV in his exam room, then sends me off to drive back to work - I did this daily while I was working (I no longer work now) for the 5 doses required for a relapse - no being off on sick leave, no addmitting to hospital, no ackowledgment of the side effects of this treatment and how it affected my body and my personality, no personal time to come to terms with new disabilities - they happened in front of the world! He's not really that bad I suppose, he probably deals with people much worse off than me, so he gets irritated if I don't tell him that I am FINE.

So the choice of a medical team is very important, and you are fortunate to be in a country that offers choice. Once ms starts to cause problems, I think it is really best to surround your self with a great medical team, and get as much information as possible - challenge your doc if you don't understand anything.
Ms at this time can be managed to an etent - depending on how you respond to treatment - luckily there are a few you can try - the big step is to do something. There are also great meds out there for some other symptoms, so please discuss these with your doc too

I will be very happy to help in any way I can & I hope that you upcoming appointments go really well. Please report back if you can & let us know how you are doing.

Take care

Wow, thank you so much (and all of you that responded). It's really, really nice to read the words and learn. I knew I needed contact with others! Have an MRI next week and have learned much about meds recently (which I have not been on for a year or so--due to side effects each gave me). I intend to get on some again after MRI (which doc/neurologist said she needed for more consideration--as I haven't done one of those in awhile either).
It's both very nice and very sad to hear about everyone's struggles... but honestly it really helps me soooo much.
You are not alone either!
Cindy

Cindy,

One of my biggest problems was really accepting it. One thing my wife told me was "you are not disabled, you are challenged". Those words changed everything for me. Although I am a 4.5 on the EDSS scale, I still work and I can still walk with out an assistive device. Now I can't walk very long without one, but just understanding where you are at the given time you are dealing with it is important. Because my MS has progressed pretty rapidly this last year and a half, I was "feeling" more disabled than I am. You MUST do what you can do and look at it from that perspective. I have challenges. And my personality type does not back down from a challenge, but freaks when you introduce "you are disabled" into it.

By the time I (if) get to the point where I call myself disabled, maybe I can accept cranking up my perception of myself another notch. It was just too hard for me to go from healthy to disabled in one step.

I have no idea if that makes sense to you or not, but worrying about what MIGHT happen can sap the life right out of what IS happening. It helped me to look at it that way. I also wrote something about denial a while back that I will try and find. Denial in a vacuum is not necessarily a bad thing. As a matter of fact, it is a useful tool in our arsenal of coping mechanisms. To sum it up, good denial is refusing to accept limits while bad denial is denying that a loss has occured. We have experienced loss of function, even if it is just our attitudes, but we can always figure out ways to try and overcome limits.

Hi Cindy. Just wanted to say hello to another newbie. Long story short, I was dx RRMS 13 years ago. Recent flare made it obvious that I have been living in denial for many years. So, I understand the denial thing, and am now trying to accept my reality better.
Welcome (to both of us). Look forward to speaking with you in the future.
A.*