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Question about the future

Hello All, my name is Wolf. I'm a 48 year old male and I was diagnosed in 2015 as having relapsing remitting MS. When I was diagnosed in 2015 my neurologist stated that I have had MS for many years but could not be anymore specific than that. 


What I have learned so far, is that MS affects everyone differently and it may or may not progress, and when it does progress the disease may progress faster or it may progress slower than other people who have MS. 


Here is my question to all of you who are reading this:


As individuals with MS get older say 50's, 60's and 70's does this disease affect "most if not all" individuals where they can no longer take care of themselves? Have you experienced this, been told by your neurologist that this will happen, have seen majority of people with MS end up like this???? 


I'm not looking for a concrete answer to this, I don't even know if there is a concrete answer to this question. I'm just asking for your input and if you would share with me what you know about this disease and what your doctor's have told you.


 


Thank you,



Wolf

Replies

dxat59
dxat59

I was diagnosed at the age of 59 but told I have had MS since late teens at least. Now, at 65, my last MRI shows pretty much a clean slate. I do whatever I want to do and other than some memory issues due to the disease, I function well. I walk my dog 1/2 mile every morning, take care of my 88 year old Mom, disabled husband and babysit my 1 year old grandson often. I don't take any of those horrible shots or pills. I am on the Wahl's Protocal and it works well for me.

Gentle hugs, Linda
dsprt4help
dsprt4help

I'm 48 and was dx in 1998 with RRMS~ I've always been on a disease modifying drugs from the beginning and have gone to physical therapy for MS related issues. My Doctor just recently told me to work on maintaining what I have. Things are going to happen as your body ages, I am dealing with a heel spur on my "good" leg so that has complicated things but you just have to adjust and do the best you can. My best advice would be to get started with a physical therapist if you start having issues with balance or strength. There are even therapies for incontinence. Talk to your Neuro or even your primary care Dr about issues so you can get a handle on things before they get worse. Hope that makes sense.
Wolf1
Wolf1

Dear Linda and dsprt4help,

I would like to thank you both for responding to my post.

For me, I am on Copaxione and give myself a shot three times a week. This is what I chose to do. I do have some physical issues relating to my MS. I have problems with my memory, some muscle weakness and issues with pain in my neck, right arm and right leg. I have gone to a physical therapist to help with the pain and I'm also getting medical massages from a certified and experienced massage therapist.

I understand as we all get older that our bodies will change and our bodies will change with or without having MS.

What I fear the most is my body changing for the worst as I become older "because I have MS". Since I was diagnosed, I have not found any concrete information that states a definitive "yes" I will encounter worse physical issues because I have MS or a definitive "No" I will not encounter worse physical issues because of my MS.

I equate my question about MS with the scenario of the "first time new parents having their first new born baby". All first new born babies automatically come with a manual on the do's and don'ts and on how to raise this child since the parents are brand new to this. Right??? Well, I wish for everyone who is diagnosed with MS to be given the manual on MS. This manual would tell us everything we need to know about MS and exactly how this disease will affect each and everyone's body now and in the future.

Thank you both again,
Wolf
Anne8
Anne8

No definites at all, we are all different. I personall was diagnosed in my late 30s, am in my mid-40s and have a lot of mobility issues. I hope it levels off, but no guarantees. I'm a PPMSer, so no remitting for me. . one day at a time.
dawizz95
dawizz95

I too am at the primary progressive stage; no more remitting here either. I've had this crummy disease for at least 30 years or longer. I am now in my 60s and wow are things beginning to seriously suck! I am so sick of it. Seems there is nothing they can really do for me is my take on it. Luckily, they are still dealing with my severe chronic pain issues (peripheral neuropathy is the worst of them). How much longer will I be able to get the pain meds I require with this stupid War on Drugs crap?

I hope it does not progress in your case. As others state, no one knows the reality of any of this being they do not know what the cause of MS is. For this reason, I opt not to mess around with their drugs which I do not feel have been studied long enough and what studies are out there seem to fail when it comes to proving actual efficacy IMO.
mteverest
mteverest

Wolf, there is absolutely nothing concrete in MS. I don't mean to be discouraging but there is only one concrete fact: "it's progressive"..however the speed is different in different people. hugs to you my friend.
LiteralGirl
LiteralGirl

I also was just diagnosed. Accidentally, while the MRI tech was looking at an MRI done to check out my spinal stenosis!
Avonexveteran
Avonexveteran

I have had MS for many years (diagnosed in 1995) and can still can and do take care of myself. True it has progressed slowly somewhat but has been steady the last few years.
I also take Avonex, been taking it since 96. It probably has helped in stabilizing the disease so I continue to take it and will if the doctor prescribes it for the rest of my life. Its a small price to pay for helping to stabilize my MS.
Wolf1
Wolf1

Anne8, dawizz95, mteverest, LiteralGirl and Avonexveteran,

Thank you all for replying to my question and sharing with me your situation and thoughts! I sincerely hope for each of you and myself that we all remain in reasonably good physical and mental health for as long as possible.

LiteralGirl, in 2015 my neuro surgeon ordered an MRI on my spine to look at my spinal stenosis in my neck and that was when they noticed all the scar tissue up and down my spine. They immediately performed another MRI scan which included my brain and then it was confirmed that I have MS because the MRI showed a lot of scar tissue on my brain.
lorrieonline
lorrieonline

Wolf, please don't be discouraged about the future. I agree that everyone is completely different. Someone I know has had a dormant form of MS for many years. I started out diagnosed as relapsing remitting although the specialist had always thought it was progressive. For me, I know that when I exercise and watch my diet, I do much better. The heat is something I just can't tolerate. Family members have noticed how difficult walking can be for me in the Florida heat and also how different it is when I visit my home town up north. Family still recall being astonished that I was able to walk up and down the stairs to visit relatives with relative ease compared to trying to get around in the heat, humidity and dew point in Florida.

I believe that what we eat makes a huge difference. When I eat junk, I feel awful. When I keep on a more fresh food diet, with some fish and chicken, I feel much better. Truth be told, I feel really good on a vegan diet too.

When I was first diagnosed, I read Richard Cohen's book, "Blindsided." He made me realize that we just cannot compare ourselves and situations to anyone else with MS. He was a news manager for a major tv network. He's married to Meredith Vieira. You may have heard of him. There is so much info out there when it comes to exercise and diet. It all seemed very helpful to me. I decided not to take MS prescriptions a while back, as they're not for me. I even went back to school and finished a degree while having MS. Whatever the case, I try to stay active and keeping the muscles in shape and the diet a healthy one are two of the best things I feel a person can do.
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