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Looking for people who have dealt with MS 25+ years


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Old 07-24-2008, 03:36 PM   #16
pepper55
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Re: Looking for people who have dealt with MS 25+ years

April, Thanks for your note! If it helps at all, the first years of this were the hardest, in the way of personal acceptance, and in the way of my friends/family's acceptance. The first years were the most active for me as well, as far as exaccerbations go. Leariing how to pace myself and focusing on the things I could accomplish, looking at my glass as always half full instead of half empty were key factors for me. I wish you alot of luck, if you ever need to talk, please feel free to send me a post. This does not have to be the end of the world. I raised four kids, chaufferred all four to four different sports practices, games etc., worked at various schools, cared for three dogs and a husband, lived in three different states and even lived four years in France during the time I have had MS.
I am just trying to tell you that your life does not have to stop because of MS.
Good luck April, and I am here if you need me. Pepper

 
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Old 07-24-2008, 03:50 PM   #17
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Re: Looking for people who have dealt with MS 25+ years

Quote:
Originally Posted by Snoopy61 View Post
No, I have never, ever used a DMD.

My current symptoms are: L'Hermittes, vibrations/buzzing, stiffness in my legs and back, weakness in my legs and pain.

How prevalent? That's hard to say and depends on what you mean. Many symptoms I have had since the first exacerbation which is the one that got me dx'd. After years with symptoms you learn to adapt and ignore or at least I do.

If I overdo I will pay, sometimes just a little other times alot but life goes on and so do I. I am still ambulatory. I will use a cane under certain circumstances, stairs being one otherwise I walk under my own power.

Hi again Snoopy, Sorry to hear about the L'Hermittes - I had that for a while during one of my exaccerbations, which was then followed by vertigo. Not fun! But the L' hermittes did go away, the vertigo subsided quite a bit too, although has not disappearred completely. I have sort of learned how to move and hold my head to keep the vertigo at bay. I also get the stiffness and weakness in my legs - that is usually my sign to stop overdoing. But yet, it is also the sign for me to get out and walk the dogs since getting the blood flowing in my legs again always seems to help. Good luck to you Snoopy! Pepper55

 
Old 07-25-2008, 09:36 AM   #18
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Re: Looking for people who have dealt with MS 25+ years

Quote:
Originally Posted by pepper55 View Post
Hi again Snoopy, Sorry to hear about the L'Hermittes - I had that for a while during one of my exaccerbations, which was then followed by vertigo. Not fun!

Hello, Pepper.

Please don't be sorry about the L'Hermittes. This is one of the symptoms that showed up in "86" and never left. I don't have pain with L'Hermittes but I do find it rather annoying at times.

After having said that I am now going to say I am sorry you deal with vertigo Vertigo is not a symptom I have ever had but from the description I have heard from others it doesn't sound fun, not one bit

My neuro had told me from the start, the best thing I could do is walk - I always have. I'm glad to hear you also get out and walk.

Best wishes to you, Pepper
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Old 07-25-2008, 10:17 AM   #19
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Re: Looking for people who have dealt with MS 25+ years

I echo Snoopy on the walking tip. If you are able to walk, get out there and walk folks! If it's too hot during the day, make it routine to either walk very early mornings or later in the evenings.
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Old 07-26-2008, 09:36 AM   #20
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Re: Looking for people who have dealt with MS 25+ years

My first symptom was 22 years ago and except for two bouts of optic neuritis which completely resolved, most of these years I have had no symptoms or they were relatively mild or not long lasting. I have experienced vertigo at times, foot drop and I think the "MS hug" along with lots of numbness and tingling which resolves. The MS does seem to be geting more active. Last year, my right arm/hand went numb/lost coordination brought on by stress and tennis in hot weather I am sure. I still have residual numbness. I also have mild numbness in my feet. Anyway, I have never been on meds and just started seeing a neurologist who wants me to start Avonex. I am hesitant due to the side effects. I actually considered Tysabri but there is no data beyond two years of taking the med and of course the risk of PML (even though considered low) is there. Yet the idea of once a month administration with little or no side effects is attractive. I am supposed to make my decision this week. Part of me wants to stay off drugs but my doctor thinks this is foolish as the goal is obviously to stop any progression and keep me as "normal" as possible.
At this point, I will probably try the Avonex but may not stay on it if the side effects are great. I too have wondered about people who have had it for a long time without meds - even greater than 25 years.

Last edited by mls62; 07-26-2008 at 09:47 AM.

 
Old 07-26-2008, 09:47 AM   #21
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Re: Looking for people who have dealt with MS 25+ years

Hi, mls62, and welcome. Did you get an official dx just recently or was it a long time ago? (Not clear from your post.) I'm curious to know if there have been any changes in your MRIs over the years. I do not take a DMD and am doing well but I am only about 16 months post-dx. It's good to hear from all these people who have been dxed for a long time.

 
Old 07-26-2008, 10:07 AM   #22
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Re: Looking for people who have dealt with MS 25+ years

I had a "probable" dx with my first symptom 22 years ago but my first MRI was in 1989 when I had a serious episode of optic neuritis. Nothing showed up on the MRI at that point and it resolved on it's own. I had no follow up until last year and my last MRI was three weeks ago. I do have a few tiny active lesions hence, the recommendation for meds. I am definitely in the "lucky" category but I don't want my luck to run out.

 
Old 07-26-2008, 10:22 AM   #23
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Re: Looking for people who have dealt with MS 25+ years

The reality is that MS is considered a progressive disease, whether or not it is shown to be progressing via MRIs or on a symptomatic level. When we seem to be okay it's best to think of it as having stabilized or as being in remission. The fact that it sounds like you're considered RRMS after all these years of having sx though is a good sign. Regarding your ON, it's actually difficult to say whether you really technically had MS back then -- however, ON is very closely associated with MS and in the absence of other explanations for it, is very suspcious to either having it or developing it. (If you're interested in the statistics, look up ONTT or the Optic Neurits Treatment Trials.) Part of the rub with the DMDs (or even not doing anything) is that there's really no definitive way of knowing if something is working or if it's just the natural course of someone's MS.

I do hear what you're saying. I am just very caerful about telling people what they should do. I think it's a very personal decision but one that should be made by gathering as much information as possible.

mls, I don't think we've gone off-topic here because it's very much along the lines of the original poster's query, but it would be great if you could start a new thread introducing yourself as well. Glad you found us.

Last edited by Bearygood; 07-26-2008 at 10:23 AM.

 
Old 07-27-2008, 10:47 AM   #24
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Re: Looking for people who have dealt with MS 25+ years

Hi Mls62, We can all only speak for ourselves and our own experiences. My recent attempt with Avonex was just that - an attempt so that at least I knew I gave it a fair shake, instead of dismissing it completely. It did not work for me. Tomorrow will be the first week that I stop taking it. My eyesight is still blurry at times, and I have just started the night sweats again, it seems like my body's thermometer is off, since I am overheating alot, but I am not sure if this is still the Avonex in my system, or what. Time will tell. I wish you luck in your decision to get onto a therapy - that is always tough. You reside in Connecticut? I wonder how far away we are? If you do start a new thread, I hope I can follow it. Good luck to you! Pepper55

 
Old 07-27-2008, 04:16 PM   #25
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Re: Looking for people who have dealt with MS 25+ years

Hi Pepper. Im just curious, you DID say that you were only on Avonex for ten weeks, right? Then you said My recent attempt with Avonex was just that - an attempt so that at least I knew I gave it a fair shake, instead of dismissing it completely. It did not work for me. . Im not sure I follow or agree. It takes at least 6 months for the medication to begin to work, and it takes anywhere from 4-6 months for the side effects to go away. When I started on Rebif, I had flu-like symtoms every shot night for the first 4 months- I also had optical neuritis twice and was on steroids twice for it. I thought for certain it was the wrong drug for me and that they would be taking me off it, but my MS Specialist convinced me to wait until I had been on it 6 months and have an MRI...i was shocked to find out that I had no new activity on the MRI and after month 4- no more relapses, no new symtoms and no more optical neuritis, besides the residual effects which I stil experience from it.
2 years later, Still on Rebif and still hanging in there with no new side effects, no new symtoms and no MRI activity!
Im not so sure that you really gave it a chance, however it IS your decision and I support the fact that you want off of it. There isnt enough in your system to have any withdraw effects, so what you are experiencing is probably MS related.
I hope that your MS stays stable and that you dont decide that you wish you had given this longer...many people going thru what you are going thru right now are pretty determined to get off the drug. some wind up back on it down the road when they start experiencing progression, others find a better way of life without it. i hope you are in the latter of the two!
Best of the best to you.
Nikki
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Old 07-27-2008, 06:29 PM   #26
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Re: Looking for people who have dealt with MS 25+ years

Nikki, I just have to tell you that everyday you remind me how important it is to stay on my meds and get through the first few months. I have 2 kids, a daughter 25 and a son 11 and someday I will have grandchildren and for that i'll take flu like symptoms 3 days a week. Stay strong!
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Old 07-28-2008, 04:51 AM   #27
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Re: Looking for people who have dealt with MS 25+ years

hi kris- good! Thats so cool that you have an incentive to do this. I am not making this up- the first 6 months are really horrible! Between learning to inject, learning to deal with the flu like symtoms and of course wondering if its all worth it, its very hard to stay on your shots! Let me tell you for the record, after youve been on them a year, its hard, too. You'll hit a spot in your life where you will be sick to death of doing it! Youll want to skip a few, or stop them entirely! Not a smart thing to do.

if motivation here is where you need to come to stay on top of it, tune in daily! If you need me to push you through- just shout out for help! There is absolutely no way that a drug like an Interferon can make any difference in only 10 shots. Thats established...to find out if it is the right drug for anyone, you need to give it the full 6 months. At that point, the drug is either doing what its supposed to do, or it isnt- but only an MRI can really tell.

Kudos to you Kris, stay strong. And, remember more importantly that almost all of us have gone thru this. None of us have "loved" it- but all of us who do it feel strongly that we do it for a reason and that reason is simply to take control of our MS and not let it control us.

IM a huge advocate of reminding people that no- there is no absolute certainty that the drugs are what is keeping me walking, or keeping my 50 lesions from attacking me over and over or worse yet- NEW LESIONS developing! It very well could be simply the course of my disease. BUT I am NOT willing to find out. As long as these meds are doing what they say they are supposed to do, as long as my MRIs continually come back cleaner then they started- and as long as my Neuro keeps seeing NO PROGRESSION. I'll be banging Rebif for years to come!

The idea that the meds ARENT helping me (at this stage) or I could be worse taking them then not taking them, to me, is proposterous! This is only my opinon but stated, based on being on the drugs. Without the advancement of the MS drugs, we would all be where we were 25 years ago, and to me, that is just not an option. Ill do whatever it takes to be 25 years older and still in the same condition as Im in now...MS will not win.

hugs to you Kris and keep up the good work!
Nikki
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Old 07-28-2008, 07:02 AM   #28
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Re: Looking for people who have dealt with MS 25+ years

Hi Nikki, I understand what you are saying... the fact that I was not on the Avonex long enough to let it take effect....you are right as far as that is concerned... Avonex is something that has been recommended to me several times. I refused it at first because back then, it also was too new a medication, then after it was out on the market a while, I refused it because my children were too young and my husband travelled alot for work - I just could not afford the "down time" each week. I tried it this time, because essentially I had run out of excuses not to take it, especially now that my kids are old enough to care for themselves, but in the end, I just could not handle loosing entire chunks of time out of my week - each and every week. Am I being thick headed and stubborn? Yes, without a doubt, but seeing as how there has been no change in my MRI's for years, I just didn't have it in me to continue.
I am well aware of the fact that MS is a silent disease. I realize that the damage it causes does not always show up on MRI's. Maybe the problem is that I come from a viewpoint that none of this was available for the first decade or more of my diagnosis.
For me to hear reports that a medication reduced flare ups for 4-5 years means very little, since in my case, that was the natural course of my disease. I do not want to discourage anyone from not taking one of the dmd's. That is in fact the last thing I want to do, but, my reason for posting this thread looking for those who have had this for a long time, is just that - I truly believe it is in fact different for those of us who have had it longer. My course of progression was that the first ten years I could count on a major exaccerbation (with any combination of loss of vision, not being able to walk, loss of arm, bowel and bladder problems, cognitive problems, pain, vertigo or spasms) every other year without fail, but then suddenly the exaccerbations started arriving further apart - every five years or more, and those flare ups were nothing in severity like the first ones. I used to complain about cognitive problems long before they were even recognized as a symptom of this disease. It would frustrate me, as well as scare me to death to listen to a doctor tell me that MS does not cause cognitive problems, or cause pain.
I am very happy to see how far the medical establishment has come in learning about this disease and I am happy that so many dmd's are now being offerred. I think that people who are treated as soon as possible after diagnosis do have a better shot at slowing the progression.
Could I have given Avonex a better chance before giving it up? Certainly, but in my case, the side effects were just too intrusive on my quality of life. For me, a positive mental attitude has always been my greatest defense. Unfortunately, Avonex was robbing me of being able to maintain a good attitude.
This is a great website. The people that participate really do care about each other. I do not want to discourage anyone with my point of view. We all have to decide for ourselves what works best for us. Good luck!! Pepper55

 
Old 07-28-2008, 08:32 AM   #29
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Re: Looking for people who have dealt with MS 25+ years

You know, you raised an interesting point in your last post, Pepper. Many doctors and the literature suggest that the first 10 years post-dx will determine the course of someone's MS. That said, I know someone who was originally dxed in 1979, ignored it (so I tend to believe she was not very symptomatic) and then it hit her hard around 1993. (BTW, she tried several drugs after she was "re-dxed" and they did nothing for her so she's not on anything now.) There is also a school of thought by some doctors that MS can kind of burn itself out at some point and the patient stays on a plateau. Dr. Randall Schapiro, one of the most prominent MS specialists in the country, has written about this.

I just don't think at this point there's one absolute finite truth but I tend to think that anything is possible. MS is a disease that CAN but not one that necessarily WILL. It's just so different for everybody. And definitely, being dxed for a long time can give you a different perspective on things for sure.
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Last edited by Bearygood; 07-28-2008 at 08:35 AM.

 
Old 07-28-2008, 08:41 AM   #30
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Re: Looking for people who have dealt with MS 25+ years

Quote:
Originally Posted by pepper55 View Post
For me to hear reports that a medication reduced flare ups for 4-5 years means very little, since in my case, that was the natural course of my disease.

my reason for posting this thread looking for those who have had this for a long time, is just that - I truly believe it is in fact different for those of us who have had it longer.

Nikki, those of us who have had this disease a long time and before there were treatments can have a different view about the disease and A different view about the DMDs as well as using them or not.

The only meds available to use back then was oral prednisone or ACTH to treat exacerbations. Many of us were told to try and live our lives as normally as possible and in my case, walk.

Pepper, I have had six exacerbations, three were severe and 3 mild. I consider anything NOT as bad as the first three as mild

Exacerbations, one in each of these years:

1986 - severe
1987 - severe
1994 - severe
2001 - mild
2002 - mild
2007 - mild

Five of the six exacerbations have affected by mobility. As you can see there is quite a bit of spacing between exacerbations. If I had been able to use a DMD years ago I would have assumed the DMDs were not working and had I used a DMD when the exacerbations were mild I would have assumed the DMDs were working.

As it is my MS is taking it's natural course, right or wrong for better or worse.
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