Beauty, you are a strong person! You give inspiration to others. You are just having a tough time right now with the dx. It is understandable. Even though you suspected for 8 years, it is different hearing the definite! But at least now you know and you can start to improve and make yourself healthy in all the ways your body needs it. Take your time. It will come around and become second nature for you with all you need, vitamins, exercise, mental, etc.

Also remember we all care and are here for you! You are lucky to have such a supporting DH also.

Just wanted to share a

I'm glad you got a quick answer when you sought it out. It's wonderful to have a place like this to come and work through it....so glad you found us!! Hope you are doing okay....you appear to be a very strong person....hang in there and keep us up-to-date with how you are doing.

Sorry to hear about the dx, but at least you know what you are up against now.

My first reaction to the dx was relief, and then I went through an emotional rollar coaster for awhile. Be kind to yourself this first year.

Well . . . sorry it was confirmed, and that you have to come out of denial.

I was first dx with probable MS in 1991, but after reading that there were no treatment options available, I promptly went into denial. They had done a LP, but I never asked the results and I refused a MRI. The writing was on the wall though . . . as I laid mostly paralyzed for 3 months.

When I would go see my doctor for anything, over the next several years, he was not allowed to mention the "M" word. I would tell him about the medical concern of the day/week/year, and he would test me for everything it might be. At the end of the testing, most times he would just have to say "everything is fine" . . . then off I'd go on my merry way again.

When I couldn't deny it any more, I still did. I proposed all sorts of potential dx to my doc, and he humored me by pointing out why it couldn't be "that". One day he had finally had enough though . . . and he said, "you have been to 4 specialists over the years, who have all agreed you have MS".

No more denial for me.

I knew all that time, just as you probably did deep down too. I appreciated the time I had to get used to the idea that it might be a disabling chronic illness, and I am glad the doctors let me live in denial in the meantime.

You obviously have very strong coping mechanisms, and you will get through this time of reckoning. A month or three is not going to make any difference at this point in the game . . . so take the time you need to come to grips with this before making any decisions.

Cherie

Wow Cherie, sounds a lot like the last 8 years of my life, except for the docs part... I don't think they would have played around. It is amazing the things we will do to hide the truth from ourselves!! Why do we do that... sheesh!!

Thanks for the advice and kind words. I have researched the DMDs, and I don't like any of them frankly...LOL I am contemplating NOT taking any. I seem to have a very slow progressing disease, but I know with any relapse that can change. DH does not like that. I like the LDN research I have done so far. Do you take an interferon with that? I know copaxone has been taken with it, but I want to know if anyone had taken it with interferons.

Anyhow, thanks again for sharing your story. I am just having a pity party day today!!

Hugs,
Connie

Hi Connie,

I think my first excuse was that there was nothing they could do for it, so why bother knowing? The first neurologist, who dx me with "probable" said, "if it is MS . . . it would be my recommendation that you do not have children, due to your presenting symptoms and uncertainty of this disease". I was 31 at the time, and the clock was ticking. I've since had two daughters who are now 16 and 12, and I really don't think I would have made the same decision at the time if I KNEW it was MS. Denial was a safe place to go.

They were doing trials with the interferons and LDN, but I haven't heard the results yet. Last I heard, the doctor who "discovered" LDN for MS was recommending Copaxone was ok, but not the interferons.

I take LDN alone, mostly because I have considerable difficulty with many drugs, but also because my first few specialists told me that steroids and the CRABs weren't going to help in my case. We have the highest prevalence of MS in the world, here in Canada, and my neuro's worked out of the research center that conducted many of the trials on the CRABs.

Most of my lesions are in my spine (which is not particularly good), and because of that, they suggested that the CRABs (and/or steroids) would not be effective for me. Of course I was not happy with that answer , and researched myself . . . but in the end, I agreed with their recommendation.

You are right, this disease can turn on a dime, but that can happen with or without meds too. I am now 17 yrs into it, and doing relatively well I guess. There have been some hard times for sure, but I won't regret my decision.

Just take your time deciding, and know that you can always change your mind (to either go off again, or on) in the future.

Cherie

Wow, I can see why you made that decision, and I am sure you are glad you did everytime you look at your kids. I am from PA originally. That is up in the area where the prevalence is pretty high in the US... above the 37th parallel. I am amazed at what I have learned about this disease. I am a research fanatic... always have been. I find this disease very intriguing with all the things that go with it, the fact that they can't pin point the cause yet, the difference from person to person, the way the areas of the world impact the prevalence... but, it also makes it very scarey when you have it.

I have heard the DMDs/steroid thing with the spine lesions. I have only had my cervical spine done, can the lesions go lower than that? Luckily, I suppose, I have none on my spine. I have 4 lesions, on is on or near my brainstem, and apparently that is the one that does and will cause the most trouble for me... until the disease progresses and I get more I guess...

I see the specialist on the 13th and I am going to discuss that with him. I am trying to do as much research before I see him cause I know the second opinion part is a moot point, and my regular neuro is not as knowledgable with this disease, so I want to learn as much from him as possible and bring it back to my neuro for my treatment.

Thanks again!

I am still trying to figure out everyones story, so thanks for sharing more of yours!

Yeah, I am very glad I had my family, and don't regret that decision either.

Spinal lesions are very sneaky, and from everything I've heard, once dx they often just rely on our symptoms to determine if we are likely to have lesions there. I know my docs can accurately predict which area of spine is acting up, based on the symptoms I present with. I don't have sneaky lesions though, mine are pretty obvious.

We can get lesions in the spine down to the L-level of the cord (for sure, maybe lower), but that is the T level of the spine. Our spinal cord matches in size to our spine when we are babies, but the cord doesn't grow and the spine does. Therefore, they only check the C and T spine when looking for lesions, but lesions may be found in the C, T, or L of our cord (perhaps even lower, but all housed in the T spine or very high-up L spine). Does that make sense to a nurse?

Yeah, brainstem ones aren't that great either. It's a nasty disease all around.

Good luck at your next appointment.

Cherie

i havn't read everyone's responses to you but wanted to add that i've been on copaxone for 5 yrs without any SE's. i tolerate it well. and while i've technically progressed to SPMS my condition is stable as have been my mri's.
i have c-spine and brain lesions and had a + LP with 2 OGB.

i know that each of us has to make an individual decisions about meds and a lot of folks don't take any.
my personal feeling is that since MS is a non-curable, progressive & disabling disease i'd rather not wait for a relapse to tx. who knows how'd i even be without it. maybe that's just my disease course.

i chose C initially because i was working FT and was single. i didn't want to have the flu like SE's. i also had a hx of depression and didn't want to chance taking the interferons.

so i chose to take daily shots and have no SE's.
i'm sure you're going to be so knowledgeable by the time you're ready to make the decision, yes or no.

whatever you decide will be best for you. and, you can always change course down the road.

You just said exactly what I am thinking. While I would probably choose beta if I could guarantee no SE, the SE do scare me, especially with everything that is going on in my life right now. I can't afford the flu like s/s. Like you, I also have a hx of depression, and right now I am not on anything. I would LIKE to keep it that way, but if I choose an interferon, I would probably go on an anti-depressant as a preventative. My dad was on interferon during his cancer treatment, and while it is probably different with dosages and stuff, it made him CRAZY! He could only tolerate it for a week.

I am still researching. I told DH, if I have to make a choice NOW, it will probably be C, and when my life calms down a bit, and I can afford to test the waters with the SE, I may choose beta. I am also going to discuss all this with the specialist I am going to see and se what he has to say about it.

I am intrigued with the LDN though as well... and am thinking C may be the way to go because I am considering that. Working the the addiction field, I give an amino acid treatment and we deal with brain chemistry and how that affects addiction... so I am intrigued by the epinephrin, serotonin, dopamine, and all the neurotransmitters... which is one reason I am trying to stay away from antidepressants... I want my chemistry as close to God given as possible to see how *I* can effect it!

Thanks for your insight!!