Anyone with MS or other neurological problems?

[louisana]

I’m currently waiting to see a neurologist, this will likely be delayed due to covid. I have been having severe muscle spasms, muscle twitching, body tremors, tongue tremor, leg weakness for about 8 months. My GP prescribed baclofen and amitriptyline at the start of this and I’ve been on them ever since (no improvement). I have been told my symptoms could be MS or some other neurological illness. Is there anyone else in a similar position? I’ve been trying to to blank my symptoms whilst I wait on my appointment however my leg weakness is becoming increasingly difficult. Thanks

 

[Tree_]

I do. I have 2 conditions Chiari malformation and syringomyelia. I've had brain surgery for both of them. I think it can take a lot to find the right combination of drugs. It's hard to blank out the symptoms when they're so obvious and hideous, but mentally I find that best. By the time I had my surgery both my hands had wasted away to skin and bone claws as my spinal chord was being squeezed and i couldn't walk more than a few steps without my right leg giving up. I had the most hideous headaches when i coughed, laughed, went to the toilet or laughed. It's all gone now. Its so mice to be able to laugh again.

 

[Be More Pacific]

Hi Louisana,

I have MS - I was diagnosed 19 years ago. I have taken both Baclofen and Amitripyline in the past.

Happy to answer any questions you may have

 

[louisana]

Thanks for your replies.

Tree_ you sound like you have been through a very difficult time. I am glad things are better and more manageable for you now.

Be more pacific, did it take long for your diagnosis? I am aware mine could be something completely different but it is what my GP suspects at the moment. Did/do you have any of the symptoms that I have listed in my first post?

I also have issues with my throat becoming restricted if I laugh, cry, during eating or coughing episodes. This was a symptom I’ve had for about 4 years but my GP thinks it is connected to my current symptoms. I have an appointment privately in the next few weeks but I think this will be cancelled due to covid. My symptoms don’t seem to have improved with the medication.

thanks x

 

[Be More Pacific]

Thanks for your replies.

Tree_ you sound like you have been through a very difficult time. I am glad things are better and more manageable for you now.

Be more pacific, did it take long for your diagnosis? I am aware mine could be something completely different but it is what my GP suspects at the moment. Did/do you have any of the symptoms that I have listed in my first post?

I also have issues with my throat becoming restricted if I laugh, cry, during eating or coughing episodes. This was a symptom I’ve had for about 4 years but my GP thinks it is connected to my current symptoms. I have an appointment privately in the next few weeks but I think this will be cancelled due to covid. My symptoms don’t seem to have improved with the medication.

thanks x

Yes, I was diagnosed quickly in clinical terms and no, I presented with none of of the symptoms you have (although, as I'm sure you realise, what you listed are symptoms of MS) but I have had some of them along the way.

Now I look back, I've had issues with my bladder (going to the loo and nothing happening - I thought it was cystitis - or just not making it in time) since my teens. Then, when I was in my very early twenties, I was under a lot of stress at work but continuing to go to the gym/class/swimming afterwards. I was getting stabbing pains in my ears and jawline sometimes - like someone jabbing a red hot poker at me that would last a second or so - my mum wrote it off as "a touch of neuralgia". I was also in a long distance relationship at this time so I was getting on a coach Friday evening, sleeping all the way there then sleeping until lunchtime on the Saturday. But it was all very vague and could be put down to stress (which it clearly was as stress exacerbates MS) and just general tiredness from being busy.

When I was 25, I was in a different job, working crazy hours, going out every weekend and going to the gym. I woke up one morning and my balance was off and my vision was blurred/double in my left eye. I went to the doctors who said it was a virus. It lasted around three weeks. I didn't feel ill, just odd really. It sounds hopelessly naive but I didn't Google my symptoms or anything. I do remember thinking that no one else at work had this virus but I had no further issues except for a patch of numbness on one of my thighs which didn't last long.

Fifteen months later, still working crazy hours, lots of stress, lots of drinking, dragging myself to the gym every single day, I was sitting down on the phone one night and I had a huge dizzy spell. The following morning, I woke up with my balance was off and the vision in my left eye was blurred again. I drove to work but was all over the place in the office. I got sent home. Went to the doctors who said I had an ear infection and prescribed antibiotics - he did said "oh, you've had something like this before - I'll refer you to neurology". I didn't even know what that was and just shrugged it off. I know, it sounds ridiculous now. I was off work for a month. The antibiotics didn't work. He then signed me off with a migraine. I was sleeping a lot. I would get up every day and think of the things I would try and get done that day but then I'd have a hot bath first (as my legs were always cold) and then go back to bed and sleep for the rest of the day (MS actually used to be diagnosed by putting someone in a hot bath) My vision was starting to improve so, in my wisdom, I decided to go away on a drinking weekend! On the way back, I remember thinking "this is the worst hangover I've ever had" and my legs had gone numb and I had pins and needles all the way up to my torso and in both my hands. I was really worried at this point so I got my friend to take me to A&E. I got kept in, had an MRI scan and received my diagnosis ten days later. My MRI scan and history of two clear relapses was enough to formally diagnose me. My GP and not one medical person when I was in hospital ever mentioned MS to me although I was presenting with classic MS symptoms - double vision is often the first symptom someone will have - in hospital, they just kept saying I had an inflammation on my spine so I thought I had a tumour. But I was on a ward full of ladies all having steroid treatment for MS and, after chatting with them, I started to think I might have it even though I had no idea what it was, didn't know anyone with it and there's no history of it in my family to my knowledge.

So yes, I was diagnosed very quickly in clinical terms. If I hadn't gone to A&E, I would have been waiting a year for a neurology appointment then another eighteen months for an MRI scan.

I want to stress I am a lot more clued up now!

I've never really suffered from spasms, tremor or weakness to be honest or very mildly if I have. I do dream sometimes that there is something in my mouth - the first time it was my mobile - and I can't swallow because I'll choke and I wake up in a panic - I think that's actually an MS thing. I do sometimes choke on my food for no apparent reason. Swallowing difficulties are a known MS symptom. I took Baclofen for a time as I would wake up really stiff sometimes but it sent me a bit loopy - I found Tizanidine much better but I don't take that anymore either. I was on Amitripyline for years for neuropathic pain in my arm and it also helps with my bladder but I only take it very occasionally now when I absolutely need it. The only drug I take now for anything MS related is Pregabalin, which again is for neuropathic pain. I was on various disease modifying drugs (DMD's) for years but I'm not on one now as I haven't had a relapse since 2012 (and to be honest, the neurologists I've seen are only interested in the first two as a lot of them only class relapses as new symptoms not flare ups of existing symptoms) I'm probably actually edging towards having benign MS rather than relapsing remitting as I haven't had any significant problems during my 'course' (first relapse was December 1999 so over twenty years now)

Obviously, there are struggles - it's not all about the glamour I don't work any more due to my fatigue, which is chronic, and I have residual damage from when I was having relapses (like the feeling in my hands never returned after that second relapse) but I'm still walking unaided and doing 'remarkably well' clinically. So it's not all doom and gloom I promise you. I'm quite a rare breed as I'm not bitter about it at all. I never went through all the stages of anger, grief, blah blah blah. I just accepted it immediately, carried on working, bought a house and project managed a complete renovation. I did make a lot of changes to my lifestyle though. I don't feel the need to talk about it endlessly. I don't go to any meetings. I don't wear clothes, jewellery or tattoos dedicated to having MS <shudder> And I bleeping hate the term "warrior" - I'm just a normal person living with an illness. I think this attitude has helped a lot.

So that's my story.

Can I ask you a few questions? How old are you? Are you male or female? When you say you have leg weakness, how is it presenting? Is your leg feeling heavy or dragging behind you? What are your spasms like? Does anything I've said resonate with you at all?

If you want to chat privately, I'm happy to do so x

 

[louisana]

Yes, I was diagnosed quickly in clinical terms and no, I presented with none of of the symptoms you have (although, as I'm sure you realise, what you listed are symptoms of MS) but I have had some of them along the way.

Now I look back, I've had issues with my bladder (going to the loo and nothing happening - I thought it was cystitis - or just not making it in time) since my teens. Then, when I was in my very early twenties, I was under a lot of stress at work but continuing to go to the gym/class/swimming afterwards. I was getting stabbing pains in my ears and jawline sometimes - like someone jabbing a red hot poker at me that would last a second or so - my mum wrote it off as "a touch of neuralgia". I was also in a long distance relationship at this time so I was getting on a coach Friday evening, sleeping all the way there then sleeping until lunchtime on the Saturday. But it was all very vague and could be put down to stress (which it clearly was as stress exacerbates MS) and just general tiredness from being busy.

When I was 25, I was in a different job, working crazy hours, going out every weekend and going to the gym. I woke up one morning and my balance was off and my vision was blurred/double in my left eye. I went to the doctors who said it was a virus. It lasted around three weeks. I didn't feel ill, just odd really. It sounds hopelessly naive but I didn't Google my symptoms or anything. I do remember thinking that no one else at work had this virus but I had no further issues except for a patch of numbness on one of my thighs which didn't last long.

Fifteen months later, still working crazy hours, lots of stress, lots of drinking, dragging myself to the gym every single day, I was sitting down on the phone one night and I had a huge dizzy spell. The following morning, I woke up with my balance was off and the vision in my left eye was blurred again. I drove to work but was all over the place in the office. I got sent home. Went to the doctors who said I had an ear infection and prescribed antibiotics - he did said "oh, you've had something like this before - I'll refer you to neurology". I didn't even know what that was and just shrugged it off. I know, it sounds ridiculous now. I was off work for a month. The antibiotics didn't work. He then signed me off with a migraine. I was sleeping a lot. I would get up every day and think of the things I would try and get done that day but then I'd have a hot bath first (as my legs were always cold) and then go back to bed and sleep for the rest of the day (MS actually used to be diagnosed by putting someone in a hot bath) My vision was starting to improve so, in my wisdom, I decided to go away on a drinking weekend! On the way back, I remember thinking "this is the worst hangover I've ever had" and my legs had gone numb and I had pins and needles all the way up to my torso and in both my hands. I was really worried at this point so I got my friend to take me to A&E. I got kept in, had an MRI scan and received my diagnosis ten days later. My MRI scan and history of two clear relapses was enough to formally diagnose me. My GP and not one medical person when I was in hospital ever mentioned MS to me although I was presenting with classic MS symptoms - double vision is often the first symptom someone will have - in hospital, they just kept saying I had an inflammation on my spine so I thought I had a tumour. But I was on a ward full of ladies all having steroid treatment for MS and, after chatting with them, I started to think I might have it even though I had no idea what it was, didn't know anyone with it and there's no history of it in my family to my knowledge.

So yes, I was diagnosed very quickly in clinical terms. If I hadn't gone to A&E, I would have been waiting a year for a neurology appointment then another eighteen months for an MRI scan.

I want to stress I am a lot more clued up now!

I've never really suffered from spasms, tremor or weakness to be honest or very mildly if I have. I do dream sometimes that there is something in my mouth - the first time it was my mobile - and I can't swallow because I'll choke and I wake up in a panic - I think that's actually an MS thing. I do sometimes choke on my food for no apparent reason. Swallowing difficulties are a known MS symptom. I took Baclofen for a time as I would wake up really stiff sometimes but it sent me a bit loopy - I found Tizanidine much better but I don't take that anymore either. I was on Amitripyline for years for neuropathic pain in my arm and it also helps with my bladder but I only take it very occasionally now when I absolutely need it. The only drug I take now for anything MS related is Pregabalin, which again is for neuropathic pain. I was on various disease modifying drugs (DMD's) for years but I'm not on one now as I haven't had a relapse since 2012 (and to be honest, the neurologists I've seen are only interested in the first two as a lot of them only class relapses as new symptoms not flare ups of existing symptoms) I'm probably actually edging towards having benign MS rather than relapsing remitting as I haven't had any significant problems during my 'course' (first relapse was December 1999 so over twenty years now)

Obviously, there are struggles - it's not all about the glamour I don't work any more due to my fatigue, which is chronic, and I have residual damage from when I was having relapses (like the feeling in my hands never returned after that second relapse) but I'm still walking unaided and doing 'remarkably well' clinically. So it's not all doom and gloom I promise you. I'm quite a rare breed as I'm not bitter about it at all. I never went through all the stages of anger, grief, blah blah blah. I just accepted it immediately, carried on working, bought a house and project managed a complete renovation. I did make a lot of changes to my lifestyle though. I don't feel the need to talk about it endlessly. I don't go to any meetings. I don't wear clothes, jewellery or tattoos dedicated to having MS <shudder> And I bleeping hate the term "warrior" - I'm just a normal person living with an illness. I think this attitude has helped a lot.

So that's my story.

Can I ask you a few questions? How old are you? Are you male or female? When you say you have leg weakness, how is it presenting? Is your leg feeling heavy or dragging behind you? What are your spasms like? Does anything I've said resonate with you at all?

If you want to chat privately, I'm happy to do so x

Thank you for sharing your story with me. The swallowing difficulties are quite scary. I’m sorry to hear that you have experienced this too. Your visit to A&E and diagnosis was quite quick compared to other people I have spoken too. You have a great attitude to life.

I went to A&E about two months ago due to the progressive weakness in my leg. I was seen my a junior doctor who was really quite helpful but she had to discuss my symptoms with a senior doctor who was completely rude and told me I was wasting time as this was an ongoing condition. I was told I’d just have to wait to see a neurologist. I have just been getting on with things since and trying to put things to the back of my mind.

I am a 30 year old female. I have trouble lifting my leg up when sitting, walking and laying down. My main difficulty would be in the front of my thigh. My leg is quite shaky when I do attempt to lift it. Today I am having difficulty with the bottom of my leg too and it is quite painful when walking. I don’t have any issues with back pain or anything so I do think this is connected to my muscle twitching etc. My tongue tremor is what is kind of scaring me most and I do have problems pronouncing words at times. Luckily I only get very tired in the evenings. I am a very positive person and just tend to get on with life as best as I can. My muscles twitching is very visible and my muscles ripple when this happened. They mainly happen on my legs. I have gone through episodes of quite bad tremors, my body would be shaking like I’m freezing.

Thanks for taking your time to respond. I really appreciate it

 

[Be More Pacific]

I have something called 'foot drop' which you may have read about. It affects my left leg (it's pretty much always my left side that is affected with anything) For example, sometimes, I struggle when putting on underwear or trousers to lift my leg - I miss the hole a few times and/or have to hang onto the wall or my partner to keep my balance. Also, when I'm really tired, I have to physically 'lift' my leg with my hands to get it out of the car and, when I walk, it drags a little behind me. Mine is a pretty mild case though. I also have a real tightness sometimes in my calves that makes walking difficult. Is that something like you're experiencing?

When you say you're struggling to pronounce words, are you slurring? Does this happen more when you're tired? Does your mind feel 'foggy'? Also, how do you cope with heat/humidity? Does it make you tired? The muggy heat we get here really affects my fatigue and also turns me into the rattiest bastard in the world - I'm positively vile in fact I'm also struggling at the moment as I'm heading towards menopause territory and the hot flushes have started meaning a raise in my body temperature. I've been napping on the sofa every day for a couple of hours, which I've not had to do for a good while.

What I will say is that the most common symptoms for the vast majority of people with MS are fatigue (which is different from tiredness - I used to sleep for 19 hours a day when it was really, really bad and wasn't even functioning really) and bladder issues. For me, the bladder isn't that much of a big deal and it's very intermittent and can vary hugely week on week. It can be feeling the need to go, like my bladder is about to burst and then absolutely nothing happening when you get to the loo (or just a tiny bit of wee coming out) or it can be just not getting to the loo in time because you didn't get the urge to go until it was too late. It's all to do with the messages getting mixed up due to the damage to your nervous system.

What do you do for work? Is it stressful? Is your life quite 'busy'? The key to MS is actually rest. Lots of rest. It is the biggest thing you can do to help yourself. I have to time manage very carefully, I write endless to do lists and plan everything so I can make sure I get enough rest. If I have a busy day - like tomorrow, I plan to do some cleaning if I feel up to it, I make sure that Monday will be a much easier day. It's boring but it works. I'm wondering if you haven't seen any improvement in your symptoms because you are just getting on with things (which is a totally normal reaction) Have you taken any time off at all? x

 

[louisana]

I have something called 'foot drop' which you may have read about. It affects my left leg (it's pretty much always my left side that is affected with anything) For example, sometimes, I struggle when putting on underwear or trousers to lift my leg - I miss the hole a few times and/or have to hang onto the wall or my partner to keep my balance. Also, when I'm really tired, I have to physically 'lift' my leg with my hands to get it out of the car and, when I walk, it drags a little behind me. Mine is a pretty mild case though. I also have a real tightness sometimes in my calves that makes walking difficult. Is that something like you're experiencing?

When you say you're struggling to pronounce words, are you slurring? Does this happen more when you're tired? Does your mind feel 'foggy'? Also, how do you cope with heat/humidity? Does it make you tired? The muggy heat we get here really affects my fatigue and also turns me into the rattiest bastard in the world - I'm positively vile in fact I'm also struggling at the moment as I'm heading towards menopause territory and the hot flushes have started meaning a raise in my body temperature. I've been napping on the sofa every day for a couple of hours, which I've not had to do for a good while.

What I will say is that the most common symptoms for the vast majority of people with MS are fatigue (which is different from tiredness - I used to sleep for 19 hours a day when it was really, really bad and wasn't even functioning really) and bladder issues. For me, the bladder isn't that much of a big deal and it's very intermittent and can vary hugely week on week. It can be feeling the need to go, like my bladder is about to burst and then absolutely nothing happening when you get to the loo (or just a tiny bit of wee coming out) or it can be just not getting to the loo in time because you didn't get the urge to go until it was too late. It's all to do with the messages getting mixed up due to the damage to your nervous system.

What do you do for work? Is it stressful? Is your life quite 'busy'? The key to MS is actually rest. Lots of rest. It is the biggest thing you can do to help yourself. I have to time manage very carefully, I write endless to do lists and plan everything so I can make sure I get enough rest. If I have a busy day - like tomorrow, I plan to do some cleaning if I feel up to it, I make sure that Monday will be a much easier day. It's boring but it works. I'm wondering if you haven't seen any improvement in your symptoms because you are just getting on with things (which is a totally normal reaction) Have you taken any time off at all? x

Yes I have heard of foot drop. I do have times were I need to lift my leg, mainly getting into the car. I don’t appear to have any tightness luckily. It’s very hard to explain.

In regards to my pronouncing of words. I just seem to muddle them up. I forgot the names of certain items, I can visualise what I’m trying to talk about but I can’t actually name what it is. I might ask one of the kids to get me something and will spend a few mins trying to tell them where it is. I don’t really feeling tired at all during the days but in the evening a sudden bout of fatigue will hit me and I am the most difficult person to be around. Trying to get words out at this time will be extra hard (but it does affect me everyday regardless of tiredness or not). I’m absolutely fine with heat and humidity thankfully.

The fatigue and bladder issue you have sound very frustrating. Do keep resting as much as you possibly can and need. It must be hard whenever your symptoms can vary so much. Do you still attend neurology? Have you found your GP to be understanding?

I am a self-employed florist, I work from home but have taken time off for the last few months. I am also a carer for my husband who doesn’t keep very well and our daughter has quite a few medical problems. I was a very active person up until a few years ago but family health issues just kind of took over and I’ve become very inactive and put on a considerable amount of weight. To an outsider my life would appear quite stressful but I don’t feel overwhelmed by our situation. To be honest it’s been like this for a long time and has become normal to me

I will start writing some lists and try to manage my time better. I do try and rest as much as I can. Do you experience any burning sensation in your legs at all? My thighs feel like they are burning some nights. I’m going to start walking in the evenings to see if it may help by moving more xx

 

[Be More Pacific]

When you get diagnosed, you are immediately assigned an MS nurse at a hospital who you basically go to for anything MS related - they are far more specialised than a GP. The only time I ever talk to my GP about anything MS related is when I want him to prescribe a new drug (and will have a letter from my MS nurse asking him to do it) I'm also in a bit of an awkward situation because I moved nearly a year ago and, a month before we were due to leave, I got the dreaded switchover letter from Disability Living Allowance (DLA) to Personal Independence Payment (PIP) I didn't want anything to interfere with that, as I needed supporting letters from people who had known me a long time, so I decided to leave my healthcare as it was until it was done and dusted - I only see my MS nurse every six months (and I'm still with the trust I was where I lived with my ex as they agreed to keep me on when we split up and I moved to another county for continuity of care) and we just drive back to my old village each month and collect my repeat prescription. It has taken nearly a year, because I didn't get awarded what I expected initially, but I finally won my appeal last month however, obviously, now COVID has hit so I'm still in limbo as there isn't much chance of registering with a new GP at the moment. My MS nurse now knows I've moved and has basically washed her hands of me but that's fine as I'm just plodding along to be honest. In the various trusts I've been with since diagnosis, you only generally see an actual neurologist if you're having new issues or want to change DMD so, for me, it's been pretty rare on the whole. Some are great, some are arseholes. Like in any walk of life

Neuropathic pain can take many forms - stabbing, burning, itching, tingling, pins and needles. It's very distinct and I've experienced all of those at different times.

You may not think it but your life does sound pretty stressful and like you're juggling an awful lot of balls. I think some gentle walking would be good but only if you feel up to it (you may find the burning intensifies) and you could try some gentle pilates or yoga or just plain old stretching - just nothing too vigorous to start with and see how you feel. And just rest as much as you can and be kind to yourself. Self care is important. Always here if you want to chat about anything - doesn't have to be MS related xx

 

[louisana]

Hopefully it won’t be much longer until you can register with a new GP and transfer your care locally. I would have done the same thing especially when you needed to appeal your decision. It’s a stressful experience, I am going through this now with my daughters DLA application. I’m glad that your appeal went well.

I will definitely give the gentle walking a go in the home it might help my muscles and nerves start working a bit better. I absolutely love yoga and just try and get back to it. Thank you so much for your advice. I am also here if you need to chat. Take good care of yourself xx

 

[Meringue22]

Yup. I’ve got MS

 

[Keikochan]

Hi, I have MS for 4 years now and I'm type 1 diabetic for 22 yrs.
It was summer time for me and I just got very very dizzy and unbalanced. I went to my doctor and they sent me to A&E. A&E had a check and told me it was a virus and just to go home and rest and look after my diabetes blah blah blah, and I'd feel better in a week. After 2 weeks I was no better so I went back to my doctor and she did some checks and sent me back to A&E. This time in A&E they admitted me and did lots of blood tests, CT, lumbar puncture, MRI etc... The Neurologist said I had Clinically Isolated Syndrome and put me on steroids. I was in hospital for few weeks and then got to go home. It was a few months later that I had follow up appointment with Neurology and another MRI. This time the Neurologist told me there was more lesions on my brain and he told me I have MS. He explained a bit and gave me few brochures of different treatment options that he thought were suitable. I had another appointment about 2 weeks later and choose a treatment (Plegridy) and got started. This year I've had to change treatment (Tysabri) because the old 1 just wasn't stopping the lesions on my brain and spine.
I am still consistently dizzy & unbalanced, the fatigue is crushing and I just feel like I turn to jelly and can't support myself. The cog fog is super inconvenient and I am absolutely dreading the summer because I just can't cope with heat. I rely on my walking stick (I got a cute 1 from amazon) to help get around. The right side of my face goes paralyzed every so often, does that happen to any of you? I can no longer work because of the MS and that is really devastating. It has been this past year - year & half that things have just seemed to keep progressing downhill in a continuous way. I'm also on amantadine for the fatigue but I don't notice any difference with it.

 

[Be More Pacific]

Amantadine did nothing for my fatigue either @Keikochan I tried Modafinil as well - my GP prescribed it privately, following a letter from a neurologist I'd seen at Addenbrookes who said it might be worth a shot, as it's not approved for use for MS fatigue anymore - but I just wasn't in the right head space for it. I was seriously depressed at the time and wasn't even getting out of bed. You have to take two doses of it before midday but I was sleeping until gone noon most days. When I did take it properly, it just made me feel wired like steroids do. I may give it another try at some point though now I'm in a better place mentally.

The only thing that even helped my fatigue was actually Rebif, the first DMD I was on. When I was diagnosed, there was an embargo on prescribing DMD's, due to the cost, so I had to wait three years to start on one and there were only four to choose from back then. I choose Rebif for ease to be honest. But it changed my life. Fatigue has always been my worst symptom but Rebif lifted it enough to allow me to continue working full time, clean my house, walk my dog and have a relatively normal life although I would still have long naps at the weekends. It wasn't supposed to do that - DMD's aren't supposed to make you feel 'better' - but it did. I was on it for nine years but it just stopped working in 2012 - life just became like walking through treacle again - and I was switched to Gilenya, which I absolutely hated. I then tried Tecfidera for a year - I had to wait six months for that to be approved and medically retired from work as my fatigue was so bad - but I wasn't really getting on with that either (gaining weight and losing hair) so a neurologist I saw suggested coming off all DMD's for a while then we'd review the situation. I was very depressed and completely blindsided to by this decision but there wasn't any choice and I just didn't have the strength to fight it. I walked out of there stunned. I went back three months later ready for the fight but he then refused to prescribe any DMD because I'm not having relapses. It descended into a confrontation and my boyfriend had to pull me back at one point and tell me to leave it I asked for a second opinion, hence the referral to Addenbrookes, and begged to try Rebif again, as maybe it would work after having a break, but unfortunately, no one in neurology believes that it helped my fatigue because clinically, it wasn't supposed to. But it wasn't a nine year bleeping placebo effect! (I did snap that at one point) and it really pisses me off that my experience was just completely dismissed even though I'm the one with MS and I'm the one who took the drug for nine years. However, in the end, he agreed with the first neurologist (although he was a lot nicer about it) and that was that. I've not been on a DMD since 2016.

I'm not stupid. I do understand that their reasoning is sound - I don't actually fit the criteria to be prescribed any DMD - but not being on one is still something I'm not entirely comfortable with as I firmly credit Rebif for keeping me so well, although the neurologist I saw at Addenbrookes said he would have predicted I would have a mild course from my initial relapses, and to pretty much yank me off them without warning was not right in my opinion. My problem is that Rebif was so successful for me (in an unexpected way) that I was expecting the others I tried to do the same and then they didn't, which was frustrating and soul destroying. My fatigue remains ongoing and chronic. But now I don't work, I can plan things better, get plenty of rest in between jobs and there's no pressure to do everything - just do what I can. I know that if I have a 'busy' day now then I'll be completely fucked and fit for nothing the next day and that means I just can't commit to working anymore and that was very hard to accept for me. Very hard. I've worked since I was 15 and was absolutely determined to carry on working following my diagnosis.

It sounds like your MS is pretty aggressive and Tysabri is supposed to be a really good DMD. How are you getting on with it? I don't have any real life friends with MS but I do have an online friend who I met like this actually - on an forum (Digital Spy) who was asking for advice about MS. She was relapsing every three months and walking with sticks. She was offered to go on the trial for Lemtrada (then known as Campath) and she hasn't had a relapse since (around eight years ago I think) It's a big decision to make but high risk, high reward. Have you looked that as an option?

By the way, my depression is nothing to do with having MS - I don't hate having MS or feel angry about it at all - it's more just what it has caused (like having to give up work and gaining back a ton of weight that I lost and not even from a shallow point of view, just the significant difficulties it causes which actually affect me more than having MS) but that's a whole other story!

@louisana - how are you doing?

 

[Keikochan]

Amantadine did nothing for my fatigue either @Keikochan I tried Modafinil as well - my GP prescribed it privately, following a letter from a neurologist I'd seen at Addenbrookes who said it might be worth a shot, as it's not approved for use for MS fatigue anymore - but I just wasn't in the right head space for it. I was seriously depressed at the time and wasn't even getting out of bed. You have to take two doses of it before midday but I was sleeping until gone noon most days. When I did take it properly, it just made me feel wired like steroids do. I may give it another try at some point though now I'm in a better place mentally.

The only thing that even helped my fatigue was actually Rebif, the first DMD I was on. When I was diagnosed, there was an embargo on prescribing DMD's, due to the cost, so I had to wait three years to start on one and there were only four to choose from back then. I choose Rebif for ease to be honest. But it changed my life. Fatigue has always been my worst symptom but Rebif lifted it enough to allow me to continue working full time, clean my house, walk my dog and have a relatively normal life although I would still have long naps at the weekends. It wasn't supposed to do that - DMD's aren't supposed to make you feel 'better' - but it did. I was on it for nine years but it just stopped working in 2012 - life just became like walking through treacle again - and I was switched to Gilenya, which I absolutely hated. I then tried Tecfidera for a year - I had to wait six months for that to be approved and medically retired from work as my fatigue was so bad - but I wasn't really getting on with that either (gaining weight and losing hair) so a neurologist I saw suggested coming off all DMD's for a while then we'd review the situation. I was very depressed and completely blindsided to by this decision but there wasn't any choice and I just didn't have the strength to fight it. I walked out of there stunned. I went back three months later ready for the fight but he then refused to prescribe any DMD because I'm not having relapses. It descended into a confrontation and my boyfriend had to pull me back at one point and tell me to leave it I asked for a second opinion, hence the referral to Addenbrookes, and begged to try Rebif again, as maybe it would work after having a break, but unfortunately, no one in neurology believes that it helped my fatigue because clinically, it wasn't supposed to. But it wasn't a nine year bleeping placebo effect! (I did snap that at one point) and it really pisses me off that my experience was just completely dismissed even though I'm the one with MS and I'm the one who took the drug for nine years. However, in the end, he agreed with the first neurologist (although he was a lot nicer about it) and that was that. I've not been on a DMD since 2016.

I'm not stupid. I do understand that their reasoning is sound - I don't actually fit the criteria to be prescribed any DMD - but not being on one is still something I'm not entirely comfortable with as I firmly credit Rebif for keeping me so well, although the neurologist I saw at Addenbrookes said he would have predicted I would have a mild course from my initial relapses, and to pretty much yank me off them without warning was not right in my opinion. My problem is that Rebif was so successful for me (in an unexpected way) that I was expecting the others I tried to do the same and then they didn't, which was frustrating and soul destroying. My fatigue remains ongoing and chronic. But now I don't work, I can plan things better, get plenty of rest in between jobs and there's no pressure to do everything - just do what I can. I know that if I have a 'busy' day now then I'll be completely fucked and fit for nothing the next day and that means I just can't commit to working anymore and that was very hard to accept for me. Very hard. I've worked since I was 15 and was absolutely determined to carry on working following my diagnosis.

It sounds like your MS is pretty aggressive and Tysabri is supposed to be a really good DMD. How are you getting on with it? I don't have any real life friends with MS but I do have an online friend who I met like this actually - on an forum (Digital Spy) who was asking for advice about MS. She was relapsing every three months and walking with sticks. She was offered to go on the trial for Lemtrada (then known as Campath) and she hasn't had a relapse since (around eight years ago I think) It's a big decision to make but high risk, high reward. Have you looked that as an option?

By the way, my depression is nothing to do with having MS - I don't hate having MS or feel angry about it at all - it's more just what it has caused (like having to give up work and gaining back a ton of weight that I lost and not even from a shallow point of view, just the significant difficulties it causes which actually affect me more than having MS) but that's a whole other story!

@louisana - how are you doing?

Hiya I was on Modafinil as well before the Amantadine, I didn't find it did anything to help and so I changed meds being hopeful. Lol tbh the only thing I find does anything for the fatigue is sugar free red bull, I mean I need 6-8 cans to be able to get through a full day but still sure at least it tastes good!

Can I ask what country you're in? I'm in Ireland. I completely understand your frustration with the doctors, I know they are educated on this and they have seen how things work with other patients but at same time they also see that different treatments do effect different people differently and tbh if someone is getting a good effect maybe they should just go with it because there really aren't very many other options.
I don't know anyone else in real life with MS either. I have found a few people on instagram, so that's nice.

I've heard of Lemtrada. In Ireland it seems to be a very last resort option for treatment. I've only been on tysabri for 3 months now but so far I feel it is going well. The only side effect I'm having from it is that I am completely floored a few hours after and it lasts about 2 days. I think this is really good though because the infusion is only once a month and since the plegridy was once every 2 weeks and the side effects were really bad (fever, chills,headache,pain,exhaustion) and lasted for 2 days, it is just less horrible. Hopefully the tysabri will work for me.

 

[People-huv-tae-know]

I am not sure if this the right place to post but I can't make a new thread and I am desperate for advice. I've been suffering with a lot of paraesthesia, pain and thickening of one side of my body (left) since May last year. GP sent me to the breast clinic twice for an ultrasound as it all started in my left breast which also looks and feels bigger. The scans revealed nothing. I kept going back to the GP who did bloods, for deficiencies, thyroid, diabetes and coeliac. All clear. She referred me to physio who suggested that in my arm the pain is neural damage from resting my armpit on a cot rail to feed my daughter, similar to damage caused by underarm crutches. I've only seen physio twice because lockdown has prevented further appointments. He phoned today to check in with me and is adamant that nerve damage won't cause the swelling or thickening. I feel like the GP is fed up of me going back and forth but I am worried it could be something serious. She even asked me what I think it could be but I don't know and googling does not help. Plus it is sore and pain relief has no effect.

Last May my left breast felt tingly and more sensitive than usual, I put it down to hormones. A few days later my breast, armpit and left arm began to ache and felt bigger. My breast looks bigger and bras feel tighter and more uncomfortable. Lifting anything with the left arm causes instant muscle burn.

July/August - dull ache in left collarbone and left side of throat. Pulled muscle type pain on left side of chest above breast.

October to January - lower left back pain which felt like an excruciating burning pain. It radiated to left hip, down the left leg and left side of crotch. Left leg often tingles, feels tight, tense and I feel it is difficult to walk. Hip and left side of vulva feel thicker and clothes feel tighter. No visible swelling though.

March - might be unrelated but a lot of burning pain inside left chest and upper back on left side. Also had the sensation of something pushing or present under left ribcage. GP diagnosed reflux over the phone and prescribed omeprazole and gaviscon which seemed to help.

April - Gastric issues, lots of diarrhoea, excess gas, trapped gas and associated pain. I was still taking omeprazole so GP did stool tests which came back fine and prescribed lanzopresole. I took it for a few days and felt the gastric issues cleared up so stopped taking it. However since then I have experienced tingling on and off in my mouth and in my vulva and vagina. The tingling progressed into burning or stinging pain which feels internal and worse when I lie down. Gp did urine sample and ruled out thrush. In desperation I bought cystitis sachets and did the two day course and had no vaginal pain. But last night lying in bed, it flared up again until I went for a pee. Currently feel vague burning ache in the arm and chest, lower left back is sore and feels tighter muscle wise, leg is constantly tense.

I am so confused and worried that it could be a type of cancer or something else equally serious. My GP seems a bit clueless. It is so perplexing that everything is occurring on the left side. I get no pain on the right. I've researched arthritis, endometriosis, lymphedema and many other things but they don't quite match. Lately I have wondered about MS. I know it is a long shot but can anyone share their opinion on what it may be? Maybe it would help me to point my GP in the right direction. Sorry about the long post and a big thank you to anyone who reads this and replies.

 

[Be More Pacific]

Hiya I was on Modafinil as well before the Amantadine, I didn't find it did anything to help and so I changed meds being hopeful. Lol tbh the only thing I find does anything for the fatigue is sugar free red bull, I mean I need 6-8 cans to be able to get through a full day but still sure at least it tastes good!

Can I ask what country you're in? I'm in Ireland. I completely understand your frustration with the doctors, I know they are educated on this and they have seen how things work with other patients but at same time they also see that different treatments do effect different people differently and tbh if someone is getting a good effect maybe they should just go with it because there really aren't very many other options.
I don't know anyone else in real life with MS either. I have found a few people on instagram, so that's nice.

I've heard of Lemtrada. In Ireland it seems to be a very last resort option for treatment. I've only been on tysabri for 3 months now but so far I feel it is going well. The only side effect I'm having from it is that I am completely floored a few hours after and it lasts about 2 days. I think this is really good though because the infusion is only once a month and since the plegridy was once every 2 weeks and the side effects were really bad (fever, chills,headache,pain,exhaustion) and lasted for 2 days, it is just less horrible. Hopefully the tysabri will work for me.

I'm in England. The reason I got so annoyed with that neurologist - I'm really not argumentative at all with healthcare people usually - was he was trying to say my fatigue was caused by sleep apnea. I told him I don't have sleep apnea but he was absolutely adamant. A subsequent sleep study proved I don't have sleep apnea. I mean, it's not like I've been dealing with this fatigue for twenty years or anything The neurologist at Addenbrookes started telling me that he's seen thousands of patients on Rebif and no one ever said it helped their fatigue blah blah blah - I told him, very pointedly, to make sure he puts me down as the exception then.

Lemtrada is still a last chance saloon drug here I think - I'm a bit out of the loop when it comes to DMD's these days - but it's something to think about if it doesn't work out on Tysabri. The 'hangover' you describe after infusion is very common.

Keeping everything crossed for you that it works

 

[Be More Pacific]

I am not sure if this the right place to post but I can't make a new thread and I am desperate for advice. I've been suffering with a lot of paraesthesia, pain and thickening of one side of my body (left) since May last year. GP sent me to the breast clinic twice for an ultrasound as it all started in my left breast which also looks and feels bigger. The scans revealed nothing. I kept going back to the GP who did bloods, for deficiencies, thyroid, diabetes and coeliac. All clear. She referred me to physio who suggested that in my arm the pain is neural damage from resting my armpit on a cot rail to feed my daughter, similar to damage caused by underarm crutches. I've only seen physio twice because lockdown has prevented further appointments. He phoned today to check in with me and is adamant that nerve damage won't cause the swelling or thickening. I feel like the GP is fed up of me going back and forth but I am worried it could be something serious. She even asked me what I think it could be but I don't know and googling does not help. Plus it is sore and pain relief has no effect.

Last May my left breast felt tingly and more sensitive than usual, I put it down to hormones. A few days later my breast, armpit and left arm began to ache and felt bigger. My breast looks bigger and bras feel tighter and more uncomfortable. Lifting anything with the left arm causes instant muscle burn.

July/August - dull ache in left collarbone and left side of throat. Pulled muscle type pain on left side of chest above breast.

October to January - lower left back pain which felt like an excruciating burning pain. It radiated to left hip, down the left leg and left side of crotch. Left leg often tingles, feels tight, tense and I feel it is difficult to walk. Hip and left side of vulva feel thicker and clothes feel tighter. No visible swelling though.

March - might be unrelated but a lot of burning pain inside left chest and upper back on left side. Also had the sensation of something pushing or present under left ribcage. GP diagnosed reflux over the phone and prescribed omeprazole and gaviscon which seemed to help.

April - Gastric issues, lots of diarrhoea, excess gas, trapped gas and associated pain. I was still taking omeprazole so GP did stool tests which came back fine and prescribed lanzopresole. I took it for a few days and felt the gastric issues cleared up so stopped taking it. However since then I have experienced tingling on and off in my mouth and in my vulva and vagina. The tingling progressed into burning or stinging pain which feels internal and worse when I lie down. Gp did urine sample and ruled out thrush. In desperation I bought cystitis sachets and did the two day course and had no vaginal pain. But last night lying in bed, it flared up again until I went for a pee. Currently feel vague burning ache in the arm and chest, lower left back is sore and feels tighter muscle wise, leg is constantly tense.

I am so confused and worried that it could be a type of cancer or something else equally serious. My GP seems a bit clueless. It is so perplexing that everything is occurring on the left side. I get no pain on the right. I've researched arthritis, endometriosis, lymphedema and many other things but they don't quite match. Lately I have wondered about MS. I know it is a long shot but can anyone share their opinion on what it may be? Maybe it would help me to point my GP in the right direction. Sorry about the long post and a big thank you to anyone who reads this and replies.

Hi there,

Can I start by asking a few questions?

How old are you?
How old is/are your children? When did you have your daughter?
Do you work?
Any major stress or emotional upheaval in your life?

When you say you find it difficult to walk, can you describe that? Is your leg/foot dragging at all? Is your gait effected do you think? And can you describe the tightness/tenseness you feel?

The rib cage pain. Is it sharp say like when you turn over in bed? Does it maybe feel tight like you're being squeezed?

The burning pain when you're peeing. Are you having any issues with going to the loo but not being able to pee or just a few drops coming out? Or any accidents? For example, not getting the usual little urge messages until it's really late? Feeling like your bladder is full but then nothing happening?

Any issues with your vision at all?
How are you sleeping?
How are you with heat/hot baths/humidity Do any of those make you feel more tired?

If you read through my posts, does any of that sound like anything you're experiencing?

 

[louisana]

Hi, I have MS for 4 years now and I'm type 1 diabetic for 22 yrs.
It was summer time for me and I just got very very dizzy and unbalanced. I went to my doctor and they sent me to A&E. A&E had a check and told me it was a virus and just to go home and rest and look after my diabetes blah blah blah, and I'd feel better in a week. After 2 weeks I was no better so I went back to my doctor and she did some checks and sent me back to A&E. This time in A&E they admitted me and did lots of blood tests, CT, lumbar puncture, MRI etc... The Neurologist said I had Clinically Isolated Syndrome and put me on steroids. I was in hospital for few weeks and then got to go home. It was a few months later that I had follow up appointment with Neurology and another MRI. This time the Neurologist told me there was more lesions on my brain and he told me I have MS. He explained a bit and gave me few brochures of different treatment options that he thought were suitable. I had another appointment about 2 weeks later and choose a treatment (Plegridy) and got started. This year I've had to change treatment (Tysabri) because the old 1 just wasn't stopping the lesions on my brain and spine.
I am still consistently dizzy & unbalanced, the fatigue is crushing and I just feel like I turn to jelly and can't support myself. The cog fog is super inconvenient and I am absolutely dreading the summer because I just can't cope with heat. I rely on my walking stick (I got a cute 1 from amazon) to help get around. The right side of my face goes paralyzed every so often, does that happen to any of you? I can no longer work because of the MS and that is really devastating. It has been this past year - year & half that things have just seemed to keep progressing downhill in a continuous way. I'm also on amantadine for the fatigue but I don't notice any difference with it.

I am sorry to hear that you are having such a tough time. You have been through a lot. I haven’t seen a neurologist just yet and don’t think I will do any time soon. I don’t have any issues with my face being paralysed but I do have neuralgia type pain every now and then. Do you see your consultant often or have an MS nurse? Have you had any issues with muscle twitching? X

Amantadine did nothing for my fatigue either @Keikochan I tried Modafinil as well - my GP prescribed it privately, following a letter from a neurologist I'd seen at Addenbrookes who said it might be worth a shot, as it's not approved for use for MS fatigue anymore - but I just wasn't in the right head space for it. I was seriously depressed at the time and wasn't even getting out of bed. You have to take two doses of it before midday but I was sleeping until gone noon most days. When I did take it properly, it just made me feel wired like steroids do. I may give it another try at some point though now I'm in a better place mentally.

The only thing that even helped my fatigue was actually Rebif, the first DMD I was on. When I was diagnosed, there was an embargo on prescribing DMD's, due to the cost, so I had to wait three years to start on one and there were only four to choose from back then. I choose Rebif for ease to be honest. But it changed my life. Fatigue has always been my worst symptom but Rebif lifted it enough to allow me to continue working full time, clean my house, walk my dog and have a relatively normal life although I would still have long naps at the weekends. It wasn't supposed to do that - DMD's aren't supposed to make you feel 'better' - but it did. I was on it for nine years but it just stopped working in 2012 - life just became like walking through treacle again - and I was switched to Gilenya, which I absolutely hated. I then tried Tecfidera for a year - I had to wait six months for that to be approved and medically retired from work as my fatigue was so bad - but I wasn't really getting on with that either (gaining weight and losing hair) so a neurologist I saw suggested coming off all DMD's for a while then we'd review the situation. I was very depressed and completely blindsided to by this decision but there wasn't any choice and I just didn't have the strength to fight it. I walked out of there stunned. I went back three months later ready for the fight but he then refused to prescribe any DMD because I'm not having relapses. It descended into a confrontation and my boyfriend had to pull me back at one point and tell me to leave it I asked for a second opinion, hence the referral to Addenbrookes, and begged to try Rebif again, as maybe it would work after having a break, but unfortunately, no one in neurology believes that it helped my fatigue because clinically, it wasn't supposed to. But it wasn't a nine year bleeping placebo effect! (I did snap that at one point) and it really pisses me off that my experience was just completely dismissed even though I'm the one with MS and I'm the one who took the drug for nine years. However, in the end, he agreed with the first neurologist (although he was a lot nicer about it) and that was that. I've not been on a DMD since 2016.

I'm not stupid. I do understand that their reasoning is sound - I don't actually fit the criteria to be prescribed any DMD - but not being on one is still something I'm not entirely comfortable with as I firmly credit Rebif for keeping me so well, although the neurologist I saw at Addenbrookes said he would have predicted I would have a mild course from my initial relapses, and to pretty much yank me off them without warning was not right in my opinion. My problem is that Rebif was so successful for me (in an unexpected way) that I was expecting the others I tried to do the same and then they didn't, which was frustrating and soul destroying. My fatigue remains ongoing and chronic. But now I don't work, I can plan things better, get plenty of rest in between jobs and there's no pressure to do everything - just do what I can. I know that if I have a 'busy' day now then I'll be completely fucked and fit for nothing the next day and that means I just can't commit to working anymore and that was very hard to accept for me. Very hard. I've worked since I was 15 and was absolutely determined to carry on working following my diagnosis.

It sounds like your MS is pretty aggressive and Tysabri is supposed to be a really good DMD. How are you getting on with it? I don't have any real life friends with MS but I do have an online friend who I met like this actually - on an forum (Digital Spy) who was asking for advice about MS. She was relapsing every three months and walking with sticks. She was offered to go on the trial for Lemtrada (then known as Campath) and she hasn't had a relapse since (around eight years ago I think) It's a big decision to make but high risk, high reward. Have you looked that as an option?

By the way, my depression is nothing to do with having MS - I don't hate having MS or feel angry about it at all - it's more just what it has caused (like having to give up work and gaining back a ton of weight that I lost and not even from a shallow point of view, just the significant difficulties it causes which actually affect me more than having MS) but that's a whole other story!

@louisana - how are you doing?

Sorry I am only replying to you now. I find it hard to find the words to respond to messages sometimes.

I still haven’t got my appointment through. I’ve been back to a&e twice over the last two weeks and have been sent home with no answers and told to just wait until I see neurology. This is even with noticeable left sided weakness. My legs are burning quite a lot and my twitching has increased. I’m also miserable and quite easily annoyed this week. I feel sorry for my husband and children. How are you doing?

 

[Keikochan]

I am sorry to hear that you are having such a tough time. You have been through a lot. I haven’t seen a neurologist just yet and don’t think I will do any time soon. I don’t have any issues with my face being paralysed but I do have neuralgia type pain every now and then. Do you see your consultant often or have an MS nurse? Have you had any issues with muscle twitching? X



Sorry I am only replying to you now. I find it hard to find the words to respond to messages sometimes.

I still haven’t got my appointment through. I’ve been back to a&e twice over the last two weeks and have been sent home with no answers and told to just wait until I see neurology. This is even with noticeable left sided weakness. My legs are burning quite a lot and my twitching has increased. I’m also miserable and quite easily annoyed this week. I feel sorry for my husband and children. How are you doing?

Hi Louisana, I really hope you get an appointment soon with a Neurologist. Could it be that the covid19 is causing delay with that? I generally have an appointment once every year (9-12 months) but it is hit and miss if I actually see the Neurologist, mostly I see the MS Nurse. I don't like the MS Nurse tbh, she is very condescending and know it all but she makes mistakes that even I notice
Sometimes my eye goes twitchy but that only seems to happen when I'm tired.
Is there an MS group in your area? Maybe they could offer advise on arranging to see a Neurologist?

 

[louisana]

Hi Louisana, I really hope you get an appointment soon with a Neurologist. Could it be that the covid19 is causing delay with that? I generally have an appointment once every year (9-12 months) but it is hit and miss if I actually see the Neurologist, mostly I see the MS Nurse. I don't like the MS Nurse tbh, she is very condescending and know it all but she makes mistakes that even I notice
Sometimes my eye goes twitchy but that only seems to happen when I'm tired.
Is there an MS group in your area? Maybe they could offer advise on arranging to see a Neurologist?

yeah it’s definitely covid causing the delays,
I’m sure I will be seen eventually. It’s just so hard to cope with the symptoms. Is it your eyeballs that appear to twitch? That’s quite a long time between appointments. It’s awful when professionals don’t understand or even try to understand how you feel. I will have a look into a group in my local area. I was planning on going private but the waiting list is back to 8 months again. It’s a bit concerning that your ms nurse is making mistakes. How are you coping during the pandemic? X