Last reply 1 month ago
Daily symptoms – every day

Can someone help me? I’ve searched the web and all the MS sites and can’t find the answer.
I would like to hear from someone who has symptoms daily that come and go. Like everyday. For instance I permanently have numb feet but sometimes in the day it travels up to my knees then goes away back to just the feet. I have tingling buzzing in my legs that is there all the time but increases depending on what kind of day I’m having. Ants in my limbs come and go during the day. Balance varies each day. Aching muscles each day but a variety of different muscles.
This is every day without question. Pain, buzzing, breathless each and every day. Whenever I google it all I can find is ‘people have relapses periods with no symptoms’ and ‘progressive which is where people slowly get worse’. I think I’m falling in that camp and the neuro end of last year put me on Ocrevus to try and halt progression.
But with the daily symptoms it means I can’t plan a thing unless I get dosed up on lyrica and baclofen. Anyone? Judy

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kateb
1 month ago

@muffie, yes I have symptoms every day which can come and go, I really don’t understand this relapse thing. My neuro tells me to put it in my blue file, but I really want to live my life, and not spend the whole day writing about every little symptom! I have numb feet most of the time, I get breathless too, is that a symptom of MS? I never knew that. I also get vertigo alot. And I often get stiff aching muscles when I have not done much to merit it.


muffie
1 month ago

Hi there Ketab well you sound identical to me. What have you been diagnosed with? I have one lesion in my neck which is classed as solitary sclerosis and that tends to mimic primary progressive apparently so I’m used to not having relapses, but the ongoing daily symptoms are a real bummer aren’t they? Every day at different times they appear so do you find there are two choices of stay medicated all day just in case anything appears and not knowing when it’s going to come on OR take something at the time of ‘appearance’. Then feel rubbish for a time as the meds kick in. Not much of an option to choose from is it? But at least there is something to take looking on the bright side 🙄😁
Judy


stumbler
1 month ago

@muffie , persistent symptoms are the result of residual damage from earlier relapses, where the remission wasn’t quite 100%.

You may find that these symptoms come and go throughout the day. In reality, they are probably there all the time, but not so noticeable when you have other sensory stimuli, that distract you.

It’s the reason why symptoms are worse at night – there’s much less external stimuli.


vixen
1 month ago

Hi @muffie and @kateb, I report exactly the same as you. I think that for many of us, the decree of RRMS is a complete misnomer. Since my initial pre-diagnosis relapse 3 years ago, the symptoms never went on bit. They are daily; there was no period of remittance at all. I have the numb feet thing, which actually feels more like pressure. It goes up my leg to the knee to, via the calf. There is no respite whatsoever from the sensory symptoms. As @stumbler says, persistent symptoms are leftovers from previous damage. But the persistence often changes direction, or covers a new area. My consultant says she is pleased with me and I have no new lesions. I am on Tecfidera. But, I have never, and still don’t understand what it means to relapse and remit. Life is one long relapse since diagnosis, for me anyway. Does that make any sense?


stumbler
1 month ago

@muffie , additionally, Lyrica, to address the Neuropathy, and Baclofen, a muscle relaxant to manage spasms, shouldn’t be “dosed up”. They should be taken daily and consistently so their benefits can build up.


muffie
1 month ago

Stumbler thank you for your reply and I fully understand the advice of taking meds like lyrica and baclofen regularly but the amount I have to take would mean I would be stoned up daily and I am not prepared to live my life like that. In a fog. I am lucky in that they work within 30 mins / an hour because I (brace yourself) open up the capsule and put in water so there is a direct hit. Same with baclofen I dissolve it under my tongue. Both of these work very well for me as I have some days where the symptoms do not attack and I don’t want to take medications if they are not needed. It’s just my way of coping.
Judy


muffie
1 month ago

Vixen and Kateb it is so good to hear of two MS’s that have the same thing going on as me. To be honest I have felt completely alone with my daily struggles of this changing direction in different parts of my body. Remission just does not figure in my existence and my neuro is accepting of this hence the Ocrelizumab to try and cover the primary progressive angle if it is that. I can’t thank you enough for your replies. They have helped enormously so thank you. And stumbler your advice is always welcome.
Judy


kateb
1 month ago

Thanks @stumbler for your endless help and advice. Yes @muffie, we do sound similar, I have been diagnosed with RRMS this January, although my feet first went numb 6 years ago. I was sent for a brain scan which came back clear. I then had another scan about I year ago, where they saw lesions. I have no idea how many lesions I have, but I think I have got so used to alot of the symptoms that I don’t notice them. @vixen, I also have funny feeling knees
I have also suffered from bad migranes and am totally intolerant to alcohol unfortunately!
My doctor (not my neuro) believes that there are several different types of MS – and I am not talking about RR SP PP etc – and I think she is right. If it’s any consolation my grandmother had it and was not a bit disabled , in fact I never even knew

Oh yes, and also I am always ravenously hungry!


muffie
1 month ago

Kateb what meds do you take regarding the appetite? Some of them lyrica I know, makes me feel so chilled I feel (almost) normal. It’s marvellous but then I think ‘oh yeah I feel just fine and level’ etc and then my appetite comes back. It has happened so often I just ignore it and drink loads of water to fill me up.
A negative re the alcohol Kateb. My daily glass or two of wine is my saviour and I know it’s a no no but I watch every other aspect of my MS that I feel it is my one treat. Judy


kateb
1 month ago

I only take tecfidera, and lots of headache pills when I get one. I didn’t know anything about the anti spasm meds as I never associated it before, but my left side does often go into spasm.
I have always eaten alot, and am only just starting to wonder if that is connected in some way
I literally am always hungry, but I am 5ft 8 and 10 stone, so a normal BMI – very strange

Yes it is really nice to find people with similar problems! And I agree Judy, I wouldn’t take the pills unless you actually need them, or it gets silly. I actually wish I was brave enough not to take any. Have started swigging linseed oil recently, wish it could be wine!


kateb
1 month ago

I only take tecfidera, and lots of headache pills when I get one. I didn’t know anything about the anti spasm meds as I never associated it before, but my left side does often go into spasm.
I have always eaten alot, and am only just starting to wonder if that is connected in some way
I literally am always hungry, but I am 5ft 8 and 10 stone, so a normal BMI – very strange

Yes it is really nice to find people with similar problems! And I agree Judy, I wouldn’t take the pills unless you actually need them, or it gets silly. I actually wish I was brave enough not to take any. Have started swigging linseed oil recently, wish it could be wine!


sarahpen
1 month ago

If these come and go they could be Uhthoff’s symptoms. I get them when it is hot, I get hot (e.g. exercise) or when I am stressed. Just listening to my former boss’s voice on a conference call brought them on the other day – sensation returned to my hand once he stopped talking! I carry iced water in an insulated bottle with me to help manage them.
I hope you find out what is triggering things for you.


muffie
1 month ago

Hey there, I take lyrica (pregabalin) for nerve pain i.e. tingling, buzzing, nerve pain and baclofen for tight muscles and associated pain. Like when your bones and joints ache as well. Both work well for me. If you need any more info just get in touch. My neuro recommended these to me a few years ago wrote to my doctor and I get them through her. I was diagnosed in 2015 and have stayed on them in fact I couldn’t get through the day without them but like I said just want to take them as needed and it seems to work for me although I end up taking them so regularly but it’s just different times of the day. Not every day so sometimes I feel quite pleased on those days.
I have had the same feeling and tried to do without them by reducing my dosage. It wasn’t worth it and I wished I hadn’t tried it but you know weirdly sometimes I still think maybe I should try it again…🙄
Judy


stumbler
1 month ago

@muffie , I can’t condone you opening capsules to take your medication, but it works for you.

I’m aware of the “stoned” feeling. This is an initial side-effect whilst your body gets used to the medication. The medication also needs to build up in your system.

Have a chat with your MS Nurse and see what they think.

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