Last reply 4 months ago
Relapsing or secondary?

Hey everyone needed some advice I’m 34 and seeing the doctor for first time in a week after been diagnosed , not sure if I’m relapsing or secondary reckon I’ve had ms 10 years and didn’t know, I dnt have problems with walking ect, how do you know if your relapsing or secondary, does everyone with secondary have problems with walking and disability as it seems to be the case with a lot of people that post on here or are are some fine and do every day stuff like going to work gym ect, last few weeks I’ve had this on and off dizziness and wondering can relapsing ms leave these lingering issues or secondary ms, thank you everyone. X

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grandma
4 months ago

The basic difference is in the name. With rrms you have relapses, these can be loss of sight, wobbly legs, inability to speak clearly etc. We’re all very different. spms means that it progresses slowly in most cases. There is no break like there is in rrms, with that you go back to ‘nirmality


grandma
4 months ago

Got cut off. Back to normality in between, with spms you don’t. Things are here to stay sadly, either or your neuro should be able to tell the difference.😔😍


melmel1
4 months ago

Im not sure what I have does it soud like relapsing? X @grandma


nutshell88
4 months ago

You were daignosed 10 years ago and they didnt explain the differen
well if your MS relapse then recover even if 90%
with steroid or without steroids regardless then you are relapsing remitting
Time doesnt necessary mean you developed secondary


melmel1
4 months ago

@nutshell88 I was only diagnosed a couple of months ago but know I’ve had it at least 10 years X


grandma
4 months ago

You’re in the best place when you finally get to see your neuro you will get an ms nurse, usually best thing since sliced bread. Write down all the questions you want to ask, you won’t remember once you get into the consultation! We’re always here for a natter, a moan, a rant, a celebration, whatever floats your boat and remember, with ms, there’s no such thing as a silly question🤞😅😍


peterfrancis
4 months ago

@melmel1

Hi

I was diagnosed as having SPMS late in 2017, no instances of RRMS prior to this… Well none to my limited knowledge of MS at the time anyway. For several years I had been displaying signs and symptoms of RRMS without knowing what was wrong with me, just put it down to problems with T1 Diabetes, which I’ve had since the age of 11.

How to tell if it’s SP or RR ?… Well, a Doctors diagnosis is the most obvious one I’d say, apart from that take note of how rapidly you are developing new symptoms, new symptoms every other day?, if so. that would suggest SPMS. If you go for long periods of time displaying no symptoms at all and then one day you collapse and feel like you’ve been hit with a tonne of the proverbial, that’s most likely RR.


melmel1
4 months ago

My symptoms were coming and goin the tingiling and spams thats mainly disspeard now just the last 2 months on and off ive had this kinda vertigo and vision slightly off im hoping its some kinda relapse, how r u coping with ur secondary ms do u walk ok go to work ect live a norm life? My ms nurse said when people hear secondary ms thy panick? But she said everybodys secondary ms is different,thank u for the reply x @peterfrancis


peterfrancis
4 months ago

@melmel1

I am severely limited in what I can do, walking is limited to being able to stumble and limp around the Bungalow I live in, that’s on a good day. I have a Powered Wheelchair which gives me some freedom when I need to go to the shop for example.

Work is a thing of the past, not fit for work at all, I struggle to keep hold of a fork when eating let alone anything work related. I have to type one handed as my co-ordination is simply not there. Along with being physically affected by SPMS, I am also mentally affected too, unable to think logically, most of the time I feel dazed, occasional speech problems, visual distortion, etc.


melmel1
4 months ago

@peterfrancis I’m really sorry to hear this this ms is such a cruel illness, do you feel most people with secondary ms have mobility issues? Xx


mlgilber1
4 months ago

I know a couple people with secondary and are doing really well. Still walk just fine and are able to work. It really depends on the individual and how much damage has been done. Since your symptoms seem to come and go it sounds like RRMS, but your neuro will be able to tell you usually based on MRIs and time.


melmel1
4 months ago

@mlgilber1 thank you for the reply it’s so nice to her tht cause most story’s I’ve heard are people with disability with secondary, how r u doing r u on lemtrada X


mlgilber1
4 months ago

@melmel1 I’m doing pretty good. This past summer was rough and it’s when I finally was diagnosed. A month after being diagnosed I had a bad relapse and couldn’t move or feel my left leg and was getting all kinds of new symptoms. They did plasmapheresis and that fixed my leg, but still needed a walker most of the time. I am on ocrevus and have had a pretty good experience so far. I haven’t needed my walker since my infusion and most of my symptoms have disappeared. My legs were numb and tingly for almost two years straight and finally feel almost back to normal. A couple of my symptoms are flaring up a little which I think is because I recently had the shingles which was more than likely from the infusion, but it’s the best decision I’ve made so far. How’s everything with you?


nutshell88
4 months ago

@melmel1 yes. Vertigo is a relapse
I had it in 2010 too i think
It was the worst of the worst i was a university student age
I didntfinish my steroid dose because it was my second main symptom and i was panicked then my parents told me i have ms they kept it to themself with no bad intention
They didnt want me to feel different or feel scared and get worse


melmel1
4 months ago

@mlgilber1 I’m really glad ur doing well, did u ever worry because you had numb and tingiling for so long that it could have been secondary ms? I’m glad u knw it’s relapsing and on treatment, I’m up and down with emotions since been diagnosed most of my symptoms have disspeard the spasms and tingiling, but last 2 months since been diagnosed have had these small dizzy spells and I cn see but uno when ur visions ever so slightly off that’s wht I’m dealing with at the moment that’s been coming and going last 2 months. Xx


melmel1
4 months ago

@nutshell88 is it a relapse gosh what annoys me are the doctors are being so slow with the appointments I’m finAlly seeing ms specialist next week and have been waiting 3 months been torture X


mlgilber1
4 months ago

@melmel1 Yes I was worried I had secondary because my symptoms hadn’t seem to remit in about a year and were becoming worse before being out on Ocrevus. At the time they just said my MS was aggressive. My vision blurs a lot and right now it’s blurry and has been for at least a couple weeks. One time it lasted 2 months before going back to normal. I also got extreme dizzy spells before being put on a DMT. I would get so dizzy that I’d collapse on the floor just from standing up. I hear over the counter motion sickness medication helps with the vertigo.


nutshell88
4 months ago

@melmel1 first moment I got vertigo my family took me to emergency room couldnt walk the world was rolling lol wheelchair passed out on it
Woke up to see infusions in my viens asked mum cortisone she said yes i asked same as 5 years ago she nodded her head as yes
I stopped it the next day i was stupid still not as strong as i was but no dizziness gladfully
Regarding to neurologists its universal their appointments arent easy
Ive been to uk was same

But oh well here i am after 14 years from daignoses see my neuro once a year and life keeps going :/


melmel1
4 months ago

@mlgilber1 I’m curious how they can tell its relapsing or secondary cause sometimes the symptoms almost cross over, I’m hoping I’m relapsing, sounds like u get similar symptoms to me hate the eye stuff, I’m hoping this year improves, did u have a long wait to be put on meds after diagnosis everything seems so slow over here?


melmel1
4 months ago

@nutshell88 lol world rolling gosh I knw the feeling r u in the uk now I’m glad ur doin well how old r u? X


nutshell88
4 months ago

Lol I know.
I used to be in the uk study cambridge couple of courses while volunteering at citizens advice for couple of years since 2012
I was born in 1988 daignosed 2004 so i was 17
In 2011 went to America to see an MS prfs desperate with dizziness and walking inbalances suddenly got better there
He saw and said look at you you’re health is perfect he saw MRI and saud must take tysabri or imight become.bed bound in 2011 I cried but because I cried I decided to break MS cage and study abroad in uk
Im a saudi woman actually
I did and im still in same shape and form as i was in new york
I stopped meds between 2011-2018 i just began gilenya


nutshell88
4 months ago

Living in uk imwith MS for a lady is like a british person living in saudi its a different world first time used bysses taxis trains by my own was challanging but it gave me more confident even agains MS


melmel1
4 months ago

@nutshell88 Saudi nice so why did u stop from 2011 and 2018 meds was u ok during that time? Also have you tried the oxygen chamber therapy? X


mlgilber1
4 months ago

@melmel1 It can be slow here too. My neuro didn’t feel comfortable treating me anymore since she didn’t have experience with aggressive MS so she referrred me to the neurological institute which is crazy busy. They said they still hadn’t seen my medical records and it could take two months, but the guy was kind enough to go thru the stack and find mine. Then, it was going to be three months until I was seen, but I was put on a cancellation list and was seen within a week. The prior authorization for the DMTs takes awhile here. Luckily it was approved after a month and my infusion center at the hospital got me in within a week. Now that I’ve been seen by my new MS specialist it’s not hard to get an appointment and I’ve already seen him twice in the past few months and will again in March and I’ve seen my MS nurse a couple of times in between and they’re really good about calling me back if I have any questions. I’ve been very lucky. I probably still wouldn’t be diagnosed if I hadn’t gone to the ER because my first neuro told me it was anxiety even though I had a list of symptoms, but was admitted into the hospital after my numbness spread from my chest all the way down. That doctor took it a bit more seriously.


melmel1
4 months ago

@mlgilber1 sounds more quicker then here gosh same thing happened to me the doctors tried to say it was anxiety had to really push to be seen by neuros I would still be in limbo now hadn’t I pushed,the ms nurse is good but seeing the ms specialist is like gold dust someone told me cause my side is slow if I do have relapsing ms that I should research the meds now so neuro doesn’t send me away to think about it and I tell him there and then which one X


mlgilber1
4 months ago

Yeah it was nice because my neuro told me about the meds he was giving me the option on and then the assistant had me fill out and sign the different medication paperwork so I could go home and think about my options and then just call and then they put the papers for the med I chose thru. Have you researched DMTs and do you know which ones you have in mind?


melmel1
4 months ago

@mlgilber1 I have had a lil research I dnt like the look of the injections lol I hear lemtrada is meant to be top notch what’s ur thoughts? X


nutshell88
4 months ago

Because i got vertigo when I used to be on Rebef it was stressful in many ways and with it relapses didnt stop
When i told the professor in new york i want to stop it he said i wanted you to stop it take tysabri i felt my condition is in drugs market i rather risk my life with tysabri or be truly truly independent off all that and see my inner energy lol in
2018 i got a mysterious lesion so i gave in and accepted gileneya its ok feels like everyday life


mlgilber1
4 months ago

I don’t like injections. I think it’d be hard for me to give them. I hate needles. I wanted lemtrada at first, but wasn’t offered it and I’ve heard mixed things which is with every DMT. I was on Tecfidera and didn’t really like the side effects and after the relapse they said I needed a more aggressive treatment. I went for Ocrevus and have had a very positive experience so far. I’ve only been on it since October. I have my MRIs next month to see if it’s slowing the progression, but it could take up to two years. It’s been a huge bonus that it’s helped with my symptoms since that’s not what DMTs were designed for. I only have to have an infusion every 6 months so I’m not complaining. It was hard for me to even remember to take the Tec since I’m on a lot of meds for some of my symptoms.


melmel1
4 months ago

@nutshell88 so your happy with gileneya but had bad experience with rebef?


melmel1
4 months ago

@mlgilber1 I’m glad the ocrevus is working for you what was the side effects of tecfidera x do you think the tablet medications are stronger then the injections or the injections are? X


mlgilber1
4 months ago

I’m not sure which ones are stronger because I didn’t do any research on the injections. I had really bad bloating and abdominal pain on the Tec, but thankfully I never experienced the flushing like a lot of people.


melmel1
4 months ago

@mlgilber You have been such a support thank you x


nutshell88
4 months ago

@melmel1 yeh Rebef is the wirst experience in my life almost
Gilenya is worrying but I feel no side effects of it at all or so i think still didnt do the test out of no reason but laziness :p i know its risky even MS nurse said its on his responsibility to have the results but oh well :/


melmel1
4 months ago

Thank u @nutshell88

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