When can I stop ms med

I have heard that it is very rare to have a relapse in your 60's. what I don't understand is that my worst relapse happened when I was 64 and that is when I was finally diagnosed. I had 2 lesions and had spinal tap as well, and that's when they finally diagnosed me. Now, 8 years later, I recently had another MRI which says I have 35 lesions. Most of my symptoms are cognitive and I have chosen not to take anything else for my ms. I had an aneurysm in 2015 but they said has nothing to do with my ms. Is it true? I should not have another relapse? Then, it should be fine for me to not treat my ms any longer. Then I had another neuro tell me ms has no age limit or however he said that. I just wish everyone could get the stories straight or the same.

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  • I had my first MS attack in over 20 years, last September. It can happen any time.

    You may have Secondary Progressive MS, which is what I believe my MS Specialist is going to tell me at my appointment in April. Apparently most of us with Relapsing Remitting MS eventually evolve into this type. If I have it right this is where you may or may not still have attacks but, it can be doing damage, quietly, all along, even if you do not have an attack. That is why you have so many lesions that you were unaware of.

    I may have that wrong, someone correct me if I do, please.

  • @Morllyn I hope I am doing this right! Thank you so much for answering me. So need someone to talk to. Just don't know what to do. You have made me think. I assumed because I didn't have a relapse, I was ok, and don't have to take anything for my ms. I was shocked and puzzled, though, by how many new lesions I have developed. I hope you have recovered from your relapse! Wow, I never thought one could go so long before having one. Really making me think. Thank you again!

  • Hi seshultz Welcome to the MSAA Community. I hope you find our site as friendly and informative as we all do. But most of Supportive!.

    The one thing l have learned here is your never to old or to Young to have a DX of MS. And relaspe's can happen to anyone of us at anytime. The DMT's that we take, are to hopefully slow down the progression of lesions.

    Are you seeing an MS Neurologists? And l hate to say it, but MS seems to be an ever changing, and no one's symptoms are exactly the same. But we all fight the same battle!☺

    Jes🌠

    ~Helpful Hint~ If put an @ in front of person of who your addressing, they will be notified. IE @ jesmcd2 *With No Spaces*

  • @jesmcd2 Thank you for your response. I am seeing a new neurologist. I don't know that he is a specialist, but sees patients with ms. I seems quite old fashioned, might I add. I do not like any of the neurologists I have seen. So much to go into here. I just don't know what to do. Hopefully, I am safe doing nothing. I have not had a relapse for some time. At least, I don't think so. I did have that aneurysm in 2015 and have little memory of that, so who knows? I just found it so surprising to find I now have 33 new lesions. Still just trying to decide what to do. I so appreciate your response. Thank you and Bless you! Hoping you are doing well.

  • seshultz everyone is here to help☺As far as taking medication, it's a personal choice. For me, there was none, l started within the month. I was dx'ed at 50, and it's been 2yrs now, but have had 2 relaspe's. But no new lessions.☺

    I'm sure you will get more responses soon!

    Jes🌠

  • Hello Seshultz, it's Fancy1959, and I would like to officially welcome you to this incredible chat room. We are glad you have found us and you are now part of our extended family. By simply speaking many of the people in our chat room you will soon discover for yourself that MS indeed knows no age limit. It is not a disease that discriminates or discerns the young or the old or for that matter any age in between. We have members that has been diagnosed in their twenties and thirties. Then we have many members who have been diagnosed in their fifties and sixties. I am approaching 60 and my disease continues to be active. I might suggest that you call The National MS Society at 1-800 FIGHTMS. They will assign you a caseworker and that person will be in charge of your care. They will find out what area you live in and they will recommend a neurologist for you to see. Trust the neurologist they send you to. They work with top-notch neurologist. Until you get in to see the neurologist do not stop taking your current therapy. Stopping therapy will allow your MS to run amok in your body and do irreversible damage. So be very careful about changing or stopping any therapy on your own. Please keep ms informed and let me no what you find out from the national MS Society. I hope to talk to you soon. Until then please remember we are stronger together. Take care until we speak again.

  • Oh I'm so sorry to not get back to you sooner. I so appreciate all of your information. I must be honest, though. I had an aneurysm (brain) in 2015. I was in the hospital for 2 months and had nothing for my ms at that time. I really have no memory of that time except from my 2 daughters and husband. When I got home I still had to have home care and I could not bring myself to start my copaxone up again. Then I saw my neuro and he started me on aubagio. I was told to be extremely careful about my blood pressure and that medicine caused it to go very high, or so I believe. I quit it on my own because I could not get into my neuro! Finally, my md started me on bp med. that was over a year ago that I quit. I still have to take the bp med. Not sure if it was the med or it just developed. This new neuro I have just met, says it's not the aubagio. He has gone along with me not taking anything! Said I will get another MRI in August and see if it's any worse. I thought developing 33 more lesions would be considered worse! Well, I'm thinking that happened because of the aneurysm and no med for ms. I think perhaps I will try calling that number you gave me. I am so sorry for going on so long! Oh, my, I just looked back and thought "wow"! I guess I needed to talk...lol. Forgive me, won't do that to you again! Thank you and bless you if you made it through all of it!

  • @seshultz I think no neuro is the same and they don't all agree because no one really knows the answer about MS and medications. If it were like diabetes I and it was proven if you don't take insulin you will die, there would be no difference in opinion. MS isn't like that. Most neurologists at least officially will say take medication because it keeps the number of relapses down. Some follow the official line and some don't. I look at it like an insurance policy and betting against risk. Unlike car insurance where you pay and pay and my never have an accident, MS insurance is taking the medication and a risk and hoping you won't get worse, except it costs a lot more than car insurance. I was diagnosed 11 years ago at age 54 and have been on Copaxone since the start. My daughter was on Avonex 13 yrs. her neurologist said she could come off her medications b/c she is doing so well. I'm doing well too but my neurologist said he didn't think I should come off it. Who knows what will happen. There is no cure for MS and lesions can be active or not or we can get more or not. None of mine were active when I was diagnosed and they may have been old lesions but I wouldn't have known. I have not had an MRI since diagnosis so I don't know if I have more lesions or not, but my neuro says he wouldn't change anything so why have another MRI unless something outwardly changes. MRI's cannot determine the course of MS. I guess it is a matter of taking a risk or not. There are days I think I'd like to get off medication (especially when the bill comes thru) but right now I'm staying. I'll be 69 tomorrow. Maybe I'll have the discussion when I turn 70. I won't see him till then unless something new comes up.

  • Yes, I agree with all you have said. Sometimes I just get tired of being told so many different things, opinions from these doctors. I think I've had it for many years, but never diagnosed till 64 years of age. Had different relapses but it was either depression and anxiety or fibromyalgia. Oh, well, will see what happens in near future. Thank you again and wishing you well.

  • seshultz I am so sorry to hear of your fears and worries, as well as your issues. I was diagnosed at age 70, seven years ago (you do the math) and immediately went into SPMS because with the exception of optic neuritis, almost all my exacerbations are pseudo (though not to me!) I don't think there is an age limit for MS at either end...

  • Oh, my, just saw this. So how can they say we need to do nothing when we reac 60's?, It seems there are too many different views from too many different doctors.

  • seshultz,

    I don't have any answers for you, but I'm relieved you are seeing a new neurologist. I want a doctor who is not only well-versed in MS, but who will listen to me and communicate well, too. For me, that builds trust, which helps me have more confidence in whatever treatment I choose.

    We will be praying you find a great neurologist, and I hope you keep us posted.

  • Thank you so much. I'm a little concerned about my new neuro. He seems like he's living in the past! We shall see. You are very kind. Thank you for the prayers.

  • Same here! Wish I could find a neuro like you described! Thank you and wish you well!

  • MS and everything that goes with it can be quite confusing and frightening, seshultz. I, too, have heard inconsistent things from various neuros regarding age: diagnoses...and how MS quiets down after 60, etc. I've come to the conclusion that doctors really don't have all the answers. That's why it is important to me to have a neurologist well-versed in MS (at an MS clinic would be best) that you trust and feel comfortable with. I will be praying for both you and your doctor as you go forward and figure things out. I am sorry about the aneurysm too. My understanding is that has nothing to do with MS.

  • Thank you, Tutu, I completely agree with you! They certainly don't all agree!

  • @Tutu, you are right. I went to an ms clinic a while back and she told me then, eventually I can stop taking meds. Yes, the aneurysm they said had nothing to do with my ms. But I have my suspicions that's why I developed all these new lesions. I was on copaxone before it happened and had nothing for the 2 months I was in the hospital and could not bring myself to start it again when I came home.

  • I was diagnosed with MS at 67. And I am now on my 5th medication (Tysabri) since my diagnosis. Know one knows for sure how the MS is going to progress. Oh how I wish I could get some relief. But I do not have it as bad as others

  • @Booda I am so sorry I just saw this! Relieved, yet surprised someone else similar to my case! Why have I read and been told is rare for relapse in 60's! Yet we weren't diagnosed until 60's?! I have been on several meds as well and now on nothing, hoping for the best! I don't have it as bad others either and hopefully will never happen. Anyway, just so good to meet you. Would love to be able to keep in touch! God Bless and wish you well.

  • The doctor that diagnosed me sat my wife and me down and said "the good thing is your 67 the bad is you have ms but remember the good is your 67". She went on to say she most times would be having this conversation with someone in their 20s or 30s.

  • I guess I'm just a bit confused with this. Did you not have any relapses or issues until you were 67? I was diagnosed when I was 64, but I had several things happen since late 30's, including hearing loss. I was diagnosed with fibromyalgia at one time after they did major blood work. Could not find the reason for hearing loss, which was quite an experience, but too much to go into now. So, what was that doctor actually trying to say? Just a little confused.

  • @seshultz. I had nothing. I had retired, played golf 4 days a week, walked 12?to 15 miles per week, worked at golf course. Started to have back spasms at 65 but really nothing. Got worse early 66 started exams on back. Had operation did not help. Was told back was ok. Started test mri, spinal tap, etc. was told Apr of 2014 had ms. Spasms bad enough now can not walk 100 yds. Yes, I have tried many meds.

  • Booda I am so sorry you had so many problems before being diagnosed. No med seemed to help? I am continuing to do nothing right now. Hoping because of my age, won't get worse. I wish you well!

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