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Anyone with MS want to chat

250 replies

Tuesday40 · 05/11/2019 13:10

Hi I’ve recently been diagnosed with MS and wondered if anyone wanted to chat? It’s still a bit raw so don’t feel able to talk about it to people face to face.

I’ve not started treatment yet and feeling worried about what the future holds. Be great to chat to people a little further along than me, or equally hand hold with people going through the same thing.

OP posts:
Roselilly36 · 22/06/2021 17:57

Yes it is, but happy to continue on Tecfidera. So a conversation for another day.

Boonlark · 23/06/2021 08:57

I'm glad it went ok. It's really hard to take things in isn't it? I have to ask them to write things down or I forget.

Roselilly36 · 23/06/2021 10:08

@Boonlark, I wait for the letter! I will post the name of the drug, when I know for sure, be interested in others experiences.

Roselilly36 · 27/06/2021 07:02

Got the letter, Neurologist thinks I am transitioning from RRMS to Secondary Progressive. The drug he has suggested is Siponimod, I would be interested to hear anyone’s experience of Siponimod? I am currently on Tecfidera and before that Rebif.

Stellashere · 27/06/2021 08:10

Hi @Roselilly36 I’ve no experience of siponimod but just had a quick look on the MS trust. Sounds very similar to tec and if you have tolerated tecfidera then might be a good move for you if you have moved to secondary progressive? Sounds like it’s effective in slowing things down and reducing relapses. Only thing it really says is that can cause lymphocytes to drop- have yours been ok on tecfidera?

How do you feel about them saying you have progressed to secondary? Were you expecting that? Sounds like a lot to take in Flowers

Roselilly36 · 27/06/2021 08:36

@Stellashere I was expecting it, I feel I am declining even though I have not been relapsing. And yes all my bloods have been fine on the Tecfidera, usually around 1.4 on lymphocyte count, so we’ll within range.

I did have some bad side effects in the first weekend of taking it, sickness, very bad flushing etc, I still get occasional flushing, nasal drip.

I have had quite a few friends have to come off Tec due to low lymphocyte counts, strangely enough they had always seemed to be people that made the switch to tec without any side effects whatsoever.

The letter made quite depressing reading, detailing the examination etc, all things you know of course but written up in the medical terms reminded me of the early days in 2012, when I had an acute bout of Transverse Myelitis and was googling every term, and scaring myself silly!

I am coping well. DH is a tower of strength and DS’s are brilliant too.

We have recently relocated, so I don’t have any friends here, but I am very pleased we have downsized, I was really struggling in our old house, now we are in a bungalow things are much easier for me. I am the sort of person who takes things as they come, I live from day to day and try not to look too far ahead. I am still touch with friends, most days from where we lived before, so that’s nice. I think there is quite an active MS community & centre where we live, but obviously with COVID not much happening.

Stellashere · 27/06/2021 09:11

Yes @Roselilly36 can imagine it’s hard to read. I still have a sinking feeling if I log into my gp app and see it written down on there. Daft as I know I have it but seeing things written down make it feel more real.

Sounds like you will cope well with the proposed medication. Are you considering it?

Great that you have supportive DH and DS’s - how old are your kids? I have two boys but I haven’t told them. Don’t really know how to start without worrying them. On a day to day level you wouldn’t know I have ms so part of me thinks why tell them now. I know I’ll have to tell them some day.

Your new house sounds great. Are in the unpacking stages still or does it feel like your home yet? I always think it takes a good few months to settle.

Roselilly36 · 27/06/2021 09:59

My two are 20 & 18 now, we were honest with the boys from the start, we didn’t have family to look after them when I was being diagnosed with the TM so they came to the hospital, they were about 10 & 8 at the time. I am still mum, I don’t think they feel any differently, or if they do they don’t act like it!

Yes going to research the new med, and see what I think, ok to stay on Tecfidera at the moment.

Are you quite newly diagnosed? Are you on a DMD yet?

Yes getting settled, but still doing jobs here, but getting there. The bungalow was in very good order when we moved here, but as always you want to change things!

Stellashere · 27/06/2021 10:38

Hi been diagnosed about 4 years now. Mine are a similar age to when you were diagnosed. I know one would be totally fine, but my younger ds is very sensitive and a real worrier and I am concerned about the impact on him. And at the moment it doesn’t feel like I am lying to him or hiding anything because other than taking my medication it doesn’t really impact my life at the moment. Well other than fatigue but quite honestly I’ve always needed an early night! I guess there is no good time to tell them.

Yes am on tecfidera too- so far so good.

Your house sounds great- that’s on my to do list. Hopefully will move in the next few years. Prices gone crazy with COVID though

Roselilly36 · 27/06/2021 16:12

@Stellashere you know your kids the best, you will know when the time is right to tell them. Tecfidera is a good drug, much better than the injectables IMHO.

Captainclinker · 14/08/2021 18:05

Can I join you?
I developed transverse myelitis in February, and am now being investigated for ms as the possible cause. I've had some symptoms since the TM diagnosis like dizziness and fatigue which makes me think that an MS diagnosis is more likely. I had some repeat MRIs this week so am keeping fingers crossed I'll get some answers soon.
I guess I'm just after some reassurance that people manage to work and have a normalish life with MS! I'm a health care professional so realistically I know the answers, I just can't wait to feel normal again!

Stellashere · 14/08/2021 18:49

Hi @Captainclinker hope you’re doing ok. Such a stressful time being investigated for something like MS. I know you don’t know the cause yet, and it may not be MS but for reassurance I work full time, have a family and no one would ever know I have MS. I do get fatigued but nothing unmanageable- I have just learned to listen to my body and put my feet up or have an early night when I need to. I take a. DMT and haven’t had a relapse since diagnosis. It’s not a walk in the park but so far so good for me. I try and keep in mind none of us know what the future holds MS or not so I just eat well, don’t smoke and moderate exercise.

When you are likely to get your mri results? Do you have family or friends supporting you?

Captainclinker · 14/08/2021 18:55

Thanks Stella.
I've got great family and friends, work are being really good too. My consultant started me on amantadine to help with fatigue and I think it's making things a little better. I've made adaptions to lifestyle, given up smoking, lost weight etc so I don't think there is much more I can do.
I've emailed my consultant in the hope that he'll see me in the next couple of weeks. Keeping my fingers crossed

Daimyum · 22/08/2021 12:43

Hi.
I haven't been diagnosed, but am quite sure I have MS. There are multiple symptoms. I am waiting on Rheumatology and Neurology appointments. The symptons are worsening though.
What helps the neurological pain in arms and legs for you please? In the last few weeks, the burning/ tingling/ heavyness/numbness and tremors are getting worse daily. I was wondering if maybe you wear some sort of support for your hands? Lying down helps a little with the legs, so thats why I wondered. Thanks

Stellashere · 22/08/2021 13:13

Hi @Daimyum sorry to hear you are having a tough time. Maybe discuss pregablin with your GP- it’s used to treat nerve pain.

Daimyum · 22/08/2021 14:04

Thanks Stella.. I had gabapentin to try which did nothing to the pain, but make me feel high as a kite. I think pregabalin is similar isn't it. The pain team put me on eterocoxib after that. Which is doing nothing to this nerve pain. I need to ask the gp about trying pregabalin to see if better.
I was wondering if a support on the wrist/hand would do more damage due to immobilising it, or do you wear something similar?

Stellashere · 22/08/2021 16:08

I’m not sure tbh I know you’re not diagnosed but maybe call ms society they might be able to advise you of products

Daimyum · 22/08/2021 17:59

Thank you.. I'll do that

Roselilly36 · 05/10/2021 19:28

Hi all, I would really like to hear of others experiences of being dx with Secondary Progressive MS, previously RRMS. Neurologist says I could still relapse so to remain on Tecfidera for now. Any advice would be gratefully received.

Thanks

Roselilly36 · 05/10/2021 19:30

Forgot to say the latest MRI is what Neurologist is going on.

girlsyearapart · 05/10/2021 19:42

I was told recently that they no longer move people officially on to secondary progressive and now it’s active RRMS
Not sure what the difference makes tbh
I am currently on Ocrevus which is in hospital every 6 months on a drip.
Moved from Tecfidera as couldn’t tolerate the flushing and was happily on Avonex when they moved me due to progression

girlsyearapart · 05/10/2021 20:09

That should have said Aubagio. I liked that one. Avonex was the first one I took

Roselilly36 · 06/10/2021 06:51

@girlsyearapart

I was told recently that they no longer move people officially on to secondary progressive and now it’s active RRMS Not sure what the difference makes tbh I am currently on Ocrevus which is in hospital every 6 months on a drip. Moved from Tecfidera as couldn’t tolerate the flushing and was happily on Avonex when they moved me due to progression
Yes, it’s a little confusing, as letter said the MS was not active, but the MRI was consistent with Secondary Progressive MS, no new lesions since 2019, so consultant has changed the dx.

But to stay on Tecfidera as consultant is unsure as to whether relapses could return of I came off the Tecfidera.

I have been ok on the Tecfidera, bloods been fine, I flush very occasionally now, but wow, the flushing can be something else I know.

Thanks for replying xx

Stellashere · 02/11/2021 07:01

Hi everyone just checking it to see how everyone is getting on? I’m in limbo land at the moment had to change meds and am waiting for the neurologist to come back to me with new DMT suggestions- should hear in next few weeks. Can’t come quick enough for me- I hate not being on medication it makes me feel passive and like a relapse is on the way. Anyway not long to wait.

Hope you are all doing ok

Starrr123 · 20/12/2021 16:49

Hi
Sorry to jump on!
I am 27 and have a 6 month old baby! I have an mri on my spine, neck and and spine wll clear.
Also a nerve conduction was all clear! I really dotn know whats going on with me. Im struggling! They are saying anxiety but im not sure! It all started when i was pregnant! I get a twitch in my thigh! Burning sensations all over my body! Dizzy :( i just dont get it :( xx

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