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[nicoly3467]

Hi Friends,

I would like to ask if anyone feels comfortable to share what changes you noticed going from RRMS to SPMS?

I was told by my Neuro that I’m in between RRMS stage and SPMS as of last summer 2018. I had a mild relapse two months ago and my recent MRI’s in Sept showed no changes and all looks good. However, the past three days my legs have not felt as strong at times to walk around or getting up and are much more stiff; Actually my whole body feels this way. Two days ago my legs felt like they were going out on me for a few seconds when I was standing to do something, and this happened two different times that day, which worried me. My doc increased my Baclofen a while ago to help reduce more stiffness and it helps a bit during the day, but not a lot.

This just feels different. I’ve been diagnosed with MS 6 years ago, but had it much longer than that according to my first neurologist.

Thanks for your help! Nikki

[Frances_B]

SPMS is more of a retrospective "diagnosis" - i.e. time has to pass with no relapses but some ongoing deterioration before it can be decided if someone has become SPMS. If you had a mild relapse a couple of months ago then you're probably "not there" yet. Re your immediate leg problems etc - have you had a recent infection, if not, then get checked to see if you have a UTI - they often result in worse function that can seem like a relapse - it's called a pseudo relapse.

msfocusmagazine.org/Magazin...

nationalmssociety.org/What-...

[nicoly3467 in reply to Frances_B]

Frances-Thanks for info about SPMS-that’s very helpful. I don’t think I have an infection going because I don’t have any bladder pain except the normal routine of going to bathroom 1-2 times during the night. I’ve had a UTI two times before and it caused pain in bladder area, but don’t have that now. Thanks for asking though.

[Frances_B in reply to nicoly3467]

Don't completely discount the possibility of a UTI - with MS many people can have UTIs with virtually none of the standard symptoms that "normal"people get. I have only ever had three UTIs in my entire life (and I'm 60yo now), but a couple of years ago an asymptomatic one put me in hospital for two weeks. The only actual symptom I had was that my left leg almost completely stopped working and it was that, plus just generally feeling like crap, that made me drag myself off to the emergency department. I then had Christmas on IV antibiotics in hospital (Oh joy, Oh bliss - not), with my temperature spiking as high 39 and 40 degrees (104 F).

It is possible to have a low level UTI which is not causing symptoms, so I'd still be inclined to get a dipstick test done by your local doctor as it's still sensible to rule one out, even if previously when you've had a UTI you have had symptoms from it.

[nicoly3467 in reply to Frances_B]

Frances_B- “thank you” for advising me to consider about a UTI and I have one! Doc prescribed an antibiotic. You made me wonder more after you said to not negate possibility of a UTI because symptoms may not be the same or not show up as much. It’s true. They’ve been more suttle, but I also take more gabapentin now so that could mask some of this pain intensity. I do feel slight burning upon urination and didn’t realize the ‘more’ frequent trips to the bathroom lately during the night and day was from a UTI; I thought it was from my MS, lol. Sometimes all of this gets so confusing to decipher.

Anyway, thank you again-you’re a genius! Nikki

[Frances_B in reply to nicoly3467]

No worries - it may not be the answer to all your problems , but with MS a UTI can sometime be an unexpected answer, and you'll know for next time. You may find that your legs work a bit better when the infection has gone - but then again they may not - it is MS after all, and the only predictable thing with MS is that it is unpredictable . After I'd had the UTI that put me is hospital for 2 weeks I asked my physio why on earth a UTI would affect my leg function, and she advised me that some bacteria responsible for UTIs sort of "embed" themselves in the lining of your bladder and release neuro-toxins, which is why things such as leg function can be affected, or other symptoms can get worse until the UTI is cleared up.

There can be a short-term impact on function when you get a temporary increase in your temperature - this is called Uhthoff's phenomenon. With Uhthoff's the impact only lasts while your body temperature is elevated (e.g. exercise), once it's back down again things go back to working according to whatever your "normal" is. With the UTI I had my left leg ended up just not working as "normal" for about three weeks, until all traces of the neuro-toxin from the bacteria had been eliminated from my system.

msfocusmagazine.org/Magazin...

[nicoly3467 in reply to Frances_B]

Wow that is interesting and makes sense. Thanks for sharing your story too.

[Bodega1939]

When my legs stopped "working" (ie I was unable to make them move forward or back) I told my PCP who got in touch with the neurologist who had seen me several times before. This inability to control legs began sporadically and then with continuingly shorter intermissions of normal movement (as I told my neurologist). He asked if I was willing to try dalfampridine (Ampyra) with the warning it doesn't work with everybody. I did and within 1 and a half hours I was walking normally.

I must take it twice a day though I have found I can be an hour or two late and still have it work. The little grace period saves me when life interferes with my drug schedule.

I hope that information is helpful for those of us with SPMS.

[nicoly3467 in reply to Bodega1939]

Wow that’s great Ampyra helps you so much. I’m happy for you. Did it cause any fatigue when you first started? I surely don’t need any more fatigue then what I have, but I know that’s one of the side effects.

[Bodega1939 in reply to nicoly3467]

Fatigue is a really problem for everyone I have spoken to with MS. No, Ampyra did not make it worse for me. It was already "worse". Sigh.

[Kenu]

This is where I am right now. My legs and arms are slowly getting worse along with my vision. Really all of my ailments from ms have ver slowly graduated. Last two mri’s were stable and no new lesions. I just had a brain 🧠 and cervical mri’s done Last Friday and waiting for results ? He said there is two kinds of SPMS , the first is when you have major decline to begin with and the second is when you have slowly declined thru the years. This is when things are getting worse slowly and mri’s are stable. Ken 🐾🐾

[nicoly3467 in reply to Kenu]

I am sorry to hear that you’re at this stage now. It must be really hard to deal with. I appreciate the helpful info you shared from your doc. I may be on the slower decline since the decline has been gradual over the years. My last two MRIS this year didn’t show any new lesions too or changes. But my legs feel much more stiff these days and painful. I stretch daily too and exercise 3 times per week, which helps the stiffness only moderately. When I bike on my recumbent bike at a medium pace-nothing intense, it makes my leg muscles feel more stiff afterwards and I don’t understand why it’s worse than 4 months ago.

Thanks for your help and please keep me posted how you’re doing if you don’t mind.

Take care, Nikki

[greaterexp]

Nikki,

I'm sorry you're seeing progression. I'm grateful for the answers I'm reading, since my neurologist feels I am sliding into SPMS. Every doctor seems to have different ideas of when that so-called change happens, probably because it is such a blurry line. I think Frances_B nailed it with the definition and with her suggestions to check for any infection.

[nicoly3467 in reply to greaterexp]

Sorry to hear you may be sliding into that stage. It seems a bit like the unknown of what happens next. Don’t think I have a UTI-no bladder pain, which I usually get. I guess we know when things with our body is not the same as before and question it; which is good. Especially if it lingers on too long.

Thanks for your reply and take care of yourself.

[Juliew19673]

Hi Nicoly, when 1st DXED May 2018, I was told they didn't know what "version" of MS I had but slapped PPMS on everything so that I could get Ocrevus treatment. My Neuro now thinks it is definitely PPMS as its never remitted since my initial diagnosis - it has gotten better, but still problematic. Maybe I just do not understand what "remittance" means/incurs?

[nicoly3467 in reply to Juliew19673]

Hi Juliew19673-you’re a newly diagnosed person. Sounds like OCrevus has helped you and I’m happy for you.

RRMS or Relapsing Remitting is the first stage of MS. There are 4 stages. RRMS is what I was diagnosed with 6 years ago and still have it now; I have an aggressive type of RRMS though-which means I get frequent relapses (more than usual RRMS person) then after I recover or partially recover from it the “MS attack” goes into remission. My MS doesn’t go away because I still have the daily symptoms I deal with, which are hard enough. Symptoms such as; (fatigue, pain, stiffness, walking problems, cog fog, vision issues, etc.) are just not intensified when “not” in a relapse state.

When someone who has MS is in complete remission, this means their MS is not active anymore and is not causing any symptoms or problems either. It is rare, but it can happen. I’ve met a few people who have been in complete remission for years! It’s amazing to me.

Hope this answers your question.

[greaterexp in reply to Juliew19673]

msif.org/about-ms/types-of-ms/

I think this explains things well. Most sites I've looked into refer to the different types of MS, rather than stages, as that word suggests that we move from one to another. Then there is tumefactive MS, which is very rare.

cedars-sinai.edu/Patients/H...

[nicoly3467 in reply to greaterexp]

Thanks for info and link greaterexp!

[Cutefreckles72 in reply to Juliew19673]

Hi Juliew19673, I was diagnosed July 2019. When my Neuro diagnosed me he said I had PPMS. No RRMS or SPMS straight PPMS which is progressive and I started my research. I learned that PPMS usually leads to disability earlier than the most common type of relapsing-remitting MS And I believe that. I have been progressing more and more before and after I was diagnosed. I started my first treatments of Ocrevus this month. I wish I could have started the treatments earlier. I hope to get better as well. Good luck. 👍

[tombouy46]

Hi Nicole. Tom here. I crossed the RRMS to the SPMS probably a little more than a yr ago. actually probably longer than that. But you just dont want to face it. I've had several changes over that time. The biggest one was Oct of last yr when I had a major flareup that put me in the hospital for a week then off to to a rehab for about 2 1/2 months i had to learn how to walk all over again. Hold a dam fork and spoon again. It was horrible, it scared me more than anything I've ever been through. In the beginning of the rehab stay. I had myself convinced I was going into a nursing home. I felt that all the therapy in the world wasent going to give me my life back. To try and understand at the age of 59 the people, strangers. Were putting diapers on me. Yes. Diapers. Never in my friggen life could I of imagined this happening to me. But after time and after so much hard, tough grinding it out Therapy. 6 days a week. I started to get part of myself back. I was actually proud of myself. I seen the progress I've made. I was able to use a Walker for walks around the rehab. No long walks. But walks. And one of my biggest accomplishments was getting rid of those friggen diapers. For me. Wearing them was probably about as tough as the not walking. That's how bad it bothered me. I finally went home. I was beyond happy. I got to go home and see my roommate her name is Patches. She a one yr old kitty. Shes the best roomy anyone could ever ask for. I live alone with my kitty. I had to have a friend babysit her while in the rehab. Since I've been home probably about 4 months ago I started having problems with swallowing. A couple times a week it felt like my throat was closing up. I'd end up having to throw up to basically unclog throat. This just kept getting worse. over the last month or so. It's gotten to the point that its every meal. I'll eat maybe 6 or 7 bites of whatever I was making for dinner. Sure enough I'd be in the bathroom getting sick. My PCP made appts with specialists I went a couple of weeks ago for a barium swallow test. Before that they had gone down my throat with camera. Thinking it was my Asophigise. The test only showed I was having spasms below the Asophigise. I forget what it's called. I personally feel that's not the whole issue. All there giving you is this nasty ass think white drink that tasted like eating a dirty sock laying around for a month. I told them that's not going to do anything unless you have me eat something like I'd have at home. Pasta, chicken, steak. Even veggies. But I think they were offended by my suggestion. WHATEVER. I'll live with it before I drink that shit again. I read where your having problems with your legs. Well for awhile now. If I'm standing for awhile. Like in the kitchen trying to make something for dinner. My legs start getting weaker. Several times while standing there. I've actually gone down to my knees. The legs just didnt want to hold me up anymore. It's not as bad if I'm walking around with Walker. The worst times are when standing still. Like at sink doing dishes. Or just kind of hanging in a small area. They havnt given out if I was say. Walking down my hallway. Or walking around the apt. My eyesight over the last month and a half. I'm getting double vision. Blurry vision. It seems to mostly happen at night. I'm no doctor. But I'm guessing maybe as night rolls around. The more tired, more fatigued you become. Maybe that could be atleast part of it. I dont know. That's why I dont make the big bucks doc do. I've been fighting UTIs alot over the past several months. Nicole. I hope I didnt scare you or anyone else off with my thoughts and things happening in my life. Feel free to send me questions comments. To take a chill pill. Lol. My life has changed. weather it's from swapping from RR. Or SP or PP. Who knows. All we can do is do our best. I have decided to just take each day as it comes. I know I have M.S. I'm not embarrassed about it the way I was a few yrs ago. I'm going to be starting the new oral med. Mayzant in another week or 2. So I want to start off on the right foot with a positive attitude. Ok. I'm sure I've made everybody's eyes blurry from reading this book. I havnt been on in awhile. And for that I'm sorry. I'll try and do better. ALL BE SAFE

TOM

[janetb1968]

Hi honey I’m not sure if I’m sliding from RRMS to SPMS but I’m seeing my neurologist on the 23rd of October so will see what he says xxx ❤️

[nicoly3467 in reply to janetb1968]

Hopefully it’s good news for you!

[janetb1968 in reply to nicoly3467]

Thank u my love your very kind xxxxxx ❤️

[Jackjosh]

Ive been wondering also. My doctor told me it where you never feel better, which i never do. But they say im still rrms. My doctor also said she don't like labeling because some insurances don't pay for medicine for spms. She said she labels it aggressive or non aggressive which they told me I had aggressive. Plus I never really know when I'm going into a relapse

[nicoly3467 in reply to Jackjosh]

My Neuro labeled me too as having aggressive RRMS. Due to me having frequent relapses compared to average RRMS patient. Interesting!

[normwithms]

Hello Nikki-My doctor gave me the grand title of SPMS about a year ago after a 12 year stint of RRMS. My MRIs show nothing new so I am not sure why the name change. I have had no changes other than I move a lot slower. I have never had a relapse. Everything feels the same as the last 40 years, I just get weaker and slower. Good Luck

[nicoly3467 in reply to normwithms]

You’re a trooper to have MS for so long-40 years is amazing to me! Glad you never had relapses they’re not fun to deal with. Yes, one member here posted that her doc said one of the signs of SPMS is a slow decline into next stage but MRIs are fine and show no changes.

[mrsmike9]

Oh, I so feel for all of you guys. I am not there and pray I never do. But you guys are all showing strength and persistence and leading by example. If I ever do cross that bridge I will remember these posts to get through it.