Dx with RRMS but always have symptoms

[Blcasey279]

Is this an issue for anyone else or am I just weird? I was Dx with Relapsing/Remitting MS at the age of 59 (I'm 64 now). My doctors say I've probably had it for many years. I hear and read about relapses and exacerbations but I never have a time when I don't have some kind of MS symptoms going on. Sometimes it's only two or three symptoms and other times they all hit at once but I am NEVER without some type of symptoms going on. Does anyone experience this with RRMS?

[jimeka]

What you are describing is how I feel all the time and I have PPMS and I am 60. Blessings Jimeka

[erash]

Blcasey279 I have RRMS and always have some type of symptom. I was diagnosed eight years ago. At that time I didn't really notice symptoms except exacerbations trigeminal neuralgia . Now there are daily symptoms and I adapt to them. But they do accumulate

I may now have SPMS but when I ask my Neuro she says current theory is suggesting that there is very little distinction between the forms of MS. It's almost as if they occur on a continuum.

[WAshingtongirl]

Same with me Blcasey279 .

[CalfeeChick CommunityAmbassador]

Same with me, always have some symptoms, they just get worse at times. I am 68 and just went numb last summer. Have not had stage description given as yet.

[Amore55]

I was dx ten years ago and only had one 8month period when I felt reasonably good. Otherwise I have constant excruciating symptoms. I hope you find relief. Kelly xx

[StacyHayward]

Relapsing remitting doesn't mean you'll be without symptoms. It means you'll have definitive times when symptoms are worse or new. Then you will see (hopefully) a return to your "normal" level of disability. Many times you never return fully but gradually each time lose a little more.

[greaterexp]

I was dx'd in Sept. of 2016, and feel as you do, with plenty of symptoms, most of which wax and wane. I agree with StacyHayward.

[sybermomm]

I was diagnosed at age 66 in 2014. Come find out I was missed diagnosed in 1981. At that time I was having severe dizziness but not the problems I have now with my legs. I had a very wise neurologist who realized I had MS. He ordered MRI which proved it. I had so many lesions in my brain that the radiologist couldn't count them all.

[Joc-42]

I was diagnosed at 69, so some things like dizziness and balance. Plus, huge issues with bowel incontinence off an on. Seems symptoms very a lot. I take Copaxone three times a week

[Hidden]

I experience that sameness with SPMS - I am sorry we have to suffer this d*mn disease. Maybe we can think of ways to make your symptoms less bothersome (if that's possible?). I am 68 yrs, had RRMS for about 15 yrs and went into SPMS, for ~30 yrs. I believe I have had ALL of the MS symptoms at one time or another...sheesh.

[Blcasey279]

Thank you all for your comments! It helps to know that what I experience is real and I'm not the only one. The other thing I get from reading your posts is...' It doesn't really matter what the dx is.... its all a pain in the.... (fill in blank).

[Jesmcd2 CommunityAmbassador in reply to Blcasey279]

I completely agree with you Blcasey279 !🌠

[CalfeeChick CommunityAmbassador]

To give you an update, now at age 70, I have never had a time when I didn't have the numbness/tingling going on. Then a year ago the spasms started big time. I'd been on Gabapentin already but then added Baclofen to my increasing list of meds. Baclofen Helps with the spasms. One of my MS docs recently suggested CBD Creams with high levels of Magnesium to help with the spasms. Just started them this week. Available through Amazon- Called Ancient Minerals, there is one for daytime, one for night and an oil that you can massage in at the time of a spasm and wipe off later. Because I've never had a moment without symptoms and I have obvious progression of focus, fatigue and balance problems, my MS doc feels I may have gone from a probable DX to Secondary Primary. I hate labels and just want to feel better..

How are you doing? Keep us posted, Lynn