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Old 09-20-2008, 12:29 PM   #1
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Do you ever forget you have a thing called MS?

Dream, you wrote that question to me in another thread...and its a really interesting question which hopefully many will answer. But you asked me how things changed after starting Rebif.
In the beginning of starting any Interferon, I think its really hard to forget about MS- I mean, your body is getting used to what feels like poisin- you go thru the flu-like symtoms, you have to learn to adjust to giving yourself shots- its pretty tough to forget that you have MS when you are going thru all that.

But, a few months down the line, after starting the drug, I felt that I had more energy- had more of a desire to take control of my MS, and not let it control me- (thats how I got thru the first 3 months of shots, reminding myself of that) and then shots become second nature- kind of like brushing your teeth. People laugh at me when I say I can do it driving down the road....i really can, and really do! If I dont have time before I leave the house in the morning, I take it with me and do it at a redlight. But the best part about being on Rebif is that for me, it has done what its supposed to do. No more lesions showing up on my MRIs- no relapses since month 5 of being on the drug...overall, I do feel more normal. My previous symtoms have not gone away. I still have a numb tingling hand and my balance is not always perfect- but you know, I do feel more like myself and alot less 'sick' then I have in the past five years!

Attitude with this disease is EVERYTHING. You cant think about it all the time or it will drive you nuts. You DO have to moderate what you do and plan accordingly...for instance, BBQs in the middle of summer are not a good idea for us heat senstive MSers- so showing up later in the day, or earlier with the idea of cutting out early is usually a good idea.....for me, it was work which was an issue. My job as a Director of Sales kept me away from home and on the road 300+ miles a day..it was killing me. Giving it up and taking an inside office job, made a huge difference in my energy level and health! You adjust things like housework, trying to get it done in spurts and not save the whole house for Saturday...or grocery shopping, you go, but when you get home and unpack the groceries, you dont cook right away, or better yet on grocery shopping day you pick up a rotiserie chicken and eat that, instead of exhuasting yourself preparing a meal. Little things do HELP alot with feeling more normal.

MS and normal are subjective as it is different for everyone...but what does seem to be the norm is that the longer you have it, the easier it gets to get used to it and feel "normal' again. At 3 months I didnt think id ever feel good again....at 25 months- i can almost forget I have it at times!
I hope this helps you??
Nikki
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Old 09-20-2008, 01:19 PM   #2
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Re: Do you ever forget you have a thing called MS?

Great question and post Nikki. I actually within the last 24 to 48 hours came to a sort of 'grand acceptance' of my MS.

I owe a big part to Bearygood, who said to me something to the effect, it's hard when you have a mild case of MS to accept that you have the disease.

I was in denial, or questioning, fearing the future, the unknown. Then I got to reading about my symptoms in particular. I could be way off base with what I see the 'future' as now, but my symptoms are almost entirely sensory. I have not experienced foot drop, heat sensitivity (I can do hot baths, hot and humid weather makes me ick, but I think most people are like that) or Optic Neuritis. I have however experienced L'Hermittes Sign and MS hug. But otherwise, a lot of burning, *****ling, or vision problems.

As of 2 weeks ago, once my doctor finally allowed me to try Clonazepam for my burning mouth (which could be MS.... but after doing the homework, I really think bad dental triggered this puppy), I have the mouth situation under control, and I can honestly say, I don't feel like a person with MS, as of then, and as of today. Perhaps I will be fortunate and remain 'mild' for the future, with the chance of relapse there, but potentially no lasting symptoms, or those that remain being mild in themselves.

With that said, other than the injections, yes, I can forget that I have MS now. I've been stable or improving since beginning Copaxone. I'm very happy now. Happier and healthier than I have been in years (eating well, exercising). I inject daily, but when I go out with friends (for example), I can forget my MS, because it doesn't seem to bother me day to day now.

I feel very fortunate that either I am mild, and this will continue, or it was 'caught' early enough and I'm responding well to my treatment and lifestyle that I'll continue to enjoy remission and continue to forget about MS
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Old 09-20-2008, 05:29 PM   #3
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Re: Do you ever forget you have a thing called MS?

Nenu, Im happy for you. And, what you wrote, if you really read it, is all about Attitude. If you approach this from a "ive got it under control" angle, then you mentally get yourself into a good place. Sounds like you are doing that.
As we know, you have been pro-active about getting the help you need (GOOD FOR YOU!) and that too, gives you a sense of control over things. The idea that people wait forever to get diagnosis's, is heartbreaking. Not knowing what is wrong is so much worse then knowing and dealing with it. One of the things that I have learned reading your posts is that you have stopped assuming everything is MS, and started doing more research into the possiblity that you have more then just the MS going on....the fact that you have dental issues is probably NOT related to MS...and its good you can accept that and treat it accordingly. Many people get caught up in the "its because of the MS' syndrome, which isnt healthy......you cant cure MS, but so many other things that happen to all of us are ordinary, treatable issues. Knowing when to deal with MS and when to deal with "other" issues is important.

Dream wrote the original question and Im curious to see if more people respond the way we did. I do think that the meds help to give us a sense of control in a way that people who are not on meds do not understand...however are they really helping? Even I wouldnt dare to go as far as to say they are....they might be- or it might be the course of our disease naturally which is preventing progression, but Im still a huge fan of Rebif- and am happy that your Copaxone is doing the same for you.

Hugs
Nikki
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Old 09-20-2008, 07:33 PM   #4
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Re: Do you ever forget you have a thing called MS?

Girls..
THanks for the awesome replies...
They give me hope.
Love and Hugs!!

 
Old 09-21-2008, 07:09 AM   #5
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Re: Do you ever forget you have a thing called MS?

Quote:
Originally Posted by MSNik View Post
Many people get caught up in the "its because of the MS' syndrome, which isnt healthy......you cant cure MS, but so many other things that happen to all of us are ordinary, treatable issues. Knowing when to deal with MS and when to deal with "other" issues is important.
Oh for sure, but it's still tough. I saw 2 neurologists who had it in my mind, "Your burning mouth syndrome is due to a brain stem lesion". These are the 'experts'. But is an 'expert' a true 'expert', or is the proactive patient in fact, the 'true expert' of their own situation? I go with the latter.

When the disease was 'new' to me (and it still is), of course I attributed everything to MS, that wasn't a fever. It is tough to distinguish sometimes.

It's also true that MS CAN cause burning mouth. I know of other MS patients that have burning mouth without any further 'explanation'. In my case, mine began 2 weeks following my dentist giving me the bite plates for TMJ. While it could have been coincidence with the burning mouth appearing at the time, I thought back, long and hard, and I remember specifically at the time going back a month after I began to wear those plates daily, and telling my dentist "They're cutting into the back of my gums behind my molars, it hurts". I'm almost certain this came out of the dentistry. I can't turn back the past and reverse my decision (actually, my case worker at the time's) decision to send me to that dentist and treat TMJ before we knew I had MS. All I can do now is look into how to repair said damage.

Thankfully I am finding options, but in the meantime I found a drug that does not cause me side effects, and can make the pain 'livable'.
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Old 09-21-2008, 11:35 AM   #6
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Cool Re: Do you ever forget you have a thing called MS?

Nikki, I saw the post you did on the other thread and you are 100% correct in that it is the way you approach MS is going to make the difference in the outcome. It has slowed me down and taken somethings away from me that I have done all my life, but with those things missing I have replaced them with better things. Rebif and the inconvenience of having to give the shots are WELL WORTH THE BENEFITS!!!

This may sound silly, but finding out that I had MS was probably the most important day in my life. I have a genetic heart disease and I was ready to give up because of all the testing and different doctors I saw. After I was told I could FOCUS on how I was going to live with all of my symptoms. It took my neurologist about a year to get me on all the right meds to go with the Rebif, but after that I have been more comfortable. I believe the most important other than the rebif is the low dose (4.5mg) of Naltrexone I am on. I heard of it through a support group I was going to and spent about a month researching it on my own. I then suggested it to my doctor and at first he was reluctant, but then called me back and started me on it. He told me that he would be interested to see what it would do for me independently. The University that I see him at was starting a study on it, but I would be disqualified because they were only including newly diagnosed patients. It is the best $47 (since my insurance will not cover it) I spend every month. It has greatly reduced my fatigue and now I can go through the day without naps.
The best advice I can give to anyone with MS is "don't be ashamed, walk with your head up high, and never give up."

 
Old 09-21-2008, 05:46 PM   #7
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Re: Do you ever forget you have a thing called MS?

I forget sometimes, on almost every good day! On really bad days, sometimes it's all I think about. The difference between now and six months ago though, is that now when I think about it, it's not so terrible. I feel like I've accepted it for the most part, and learning all I can about the disease makes me a lot less scared.

I agree with Dave about the DX DAY being such an important one. I feel like a better, content, and wiser person because of MS. My perspective on many things has been much better, and my priorities are straight. It's just not so bad anymore.
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Old 09-21-2008, 06:50 PM   #8
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Re: Do you ever forget you have a thing called MS?

Quote:
Originally Posted by april1848 View Post
I feel like a better, content, and wiser person because of MS. My perspective on many things has been much better, and my priorities are straight.
This is so true April! And this is why I call MS "My second life", because it truly is just that, in the attitude I have taken, the lifestyle changes I have made, etc.
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Old 09-22-2008, 02:56 AM   #9
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Cool Re: Do you ever forget you have a thing called MS?

Maybe I am one of the fortunate ones and that my symptoms have been relatively mild since being DXd, though from time-to-time I have had my days (weeks). For the most part, I am pretty much still in denial about my MS. It crosses my mind daily, but sort of in the same way that "what do I want for lunch", crosses my mind. I'm of the opinion that denial is a good thing and that if it weren't for denial, I might be a basket-case. But I still go on with my life, crazy career, running with kids, and occasionally time for myself.

I do feel I look at life just a little bit differently though. I seem to notice some of the simple, mundane things in life that I never really took the time to observe. They amuse me and many times actually bring this inside smile to me. But for the most part, I'm still the same person I ever was before and I thank god for denial.

Take care all.
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Old 09-22-2008, 06:51 AM   #10
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Re: Do you ever forget you have a thing called MS?

Quote:
Originally Posted by MSNik View Post
Many people get caught up in the "its because of the MS' syndrome , which isnt healthy......you cant cure MS, but so many other things that happen to all of us are ordinary, treatable issues. Knowing when to deal with MS and when to deal with "other" issues is important.
Those are the most profound but simplistic words I've ever heard. Quick someone make t-shirts! This not only relates to MS but to man many conditions and diseases. So many folks say "oh it's the MS talking or the FMS or the (insert condition here).

It's frustrating when I read these things because sometimes what might seem like a residual issue from a condition is really something more. I read this a lot with folks who potentially have cervical / spine problems in addition to their condition. Being able to differentiate between what's treatable and what's not and when to see a doctor about something new is pretty important.

Having a good doctor who can tell the difference or when to test for something new is so important without blaming it all on one specific condition.

Sorry for the rant, but wanted to say thanks for saying something so profound!
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Old 09-22-2008, 09:19 AM   #11
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Re: Do you ever forget you have a thing called MS?

Well, in all fairness, burning mouth syndrome is a poorly understood condition, that CAN result from dentistry, lesions from MS, diabetes, menopause, vitamin deficiencies... you get the idea .

It makes sense in my case that my neurologists I saw suspected 'brain stem lesion', as they have seen cases of BMS resulting from this. I just happened to figure it out myself. Started 2 weeks following dentistry, and I remember those plates cutting into my gums horribly for a month.

Process of elimination with burning mouth syndrome, but I had to be the complete 'proactive' person in figuring this one out in the end. It's still poorly understood.
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Old 09-22-2008, 09:32 AM   #12
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Re: Do you ever forget you have a thing called MS?

Hey Kissa- just wanted to say hi and thanks for agreeing with me. I think Ill make a Tshirt this weekend! I think its really important, especially for our newbies to realize that not everything is caused by MS...it takes awhile to really realize that- and I know its not easy in the beginning; which is why I thought pointing it out was so important. Again, thanks for agreeing!
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Old 09-22-2008, 11:09 AM   #13
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Re: Do you ever forget you have a thing called MS?

This is a really interesting topic, and one I've been thinking about recently.

I have been 'coping' really well with MS. Other than when I log in here, I don't think about it. I've had to make lifestyle adjustments for my leg and a few other symptoms, but they have become second nature by now.

The couple of people who know about my ms have even commented on how well I'm dealing with it and I half jokingly say 'It's a delicate balance of ignoring it and not thinking about it!'. But lately I've been wondering about this denial and this thread has actually cyrstlised what I knew, but wouldn't admit to myself.

I have a good life, and as I said, the MS adjustments are second nature now and if you didn't know I had it, you would never guess. But I've realised that I am living in my own safe little bubble. I don't do anything outside of my comfort zone, I have practically given up on my leg - rather than excersiing and working to stregthen it. I am coasting through life without really challenging myself.

Reading how others here are still pushing themselves to do other things and be the people they would have been without the disease made me realise that I really don't. And so I'm not leading the life that I should be. I am a young single girl. I should be making the most of it!

The big example is that I used to love to travel. In the last two years I've completely lost that desire. On one hand I have the excuses of 'I might have a relapse, or my leg isn't up to it, or I couldn't keep up my vegan dairy free vitamin laden diet'. But is just fear. And so, even though I thought I was in control of my life, even with MS, I'm realising that it is in control of me because I'm letting it take things from me.

So, thanks for opening my eyes and making me face up to it! I'm not saying I'm going to take up adventure sports or anything like that. But I do need to make sure I am challenging myself, even if I do have limitations. I have a lot of thinking to do!

Cat xxx

 
Old 09-22-2008, 02:41 PM   #14
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Re: Do you ever forget you have a thing called MS?

Hi Cat. Dont be soo hard on yourself. Having "known" you for 2 years now, Id say you are one of the bravest people I know- living alone and far from home....but also because you do NOT allow MS to stop you from what I can tell...maybe this is eye opening to you and youll make some changes, but being safe isnt a bad thing, as long as you are happy...happiness cannot be measured in anything other then self satisfaction. Look at me for example. Im miserable, because Im being stopped from reaching what I consider my full potential by people who "love me". This is going to change! You can forget all about MS if you are happy with yourself and from what Im reading- your capable of doing that.
I think you are an inspiration Cat...so for what its worth, I wanted you to know that.
Hugs
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Old 09-22-2008, 03:52 PM   #15
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Re: Do you ever forget you have a thing called MS?

Thank you Nikki. For the support and the very kind words. I was thinking about my post all last night and today before I wrote it, but as soon as I wrote it I felt a bit better. Sharing works! I've been fine, but not happy for a while and it feels like I've finally figured out why.
I know you are going through a very tough time right now. But do look out for your own happiness. As you said, we can cope with this disease and take it in stride if we are happy.
You, and others on this board, are my inspiration!
Cat xxx

 
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