How is MS affecting your life?

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Patients Multiple sclerosis

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• Community manager
Posted on
Good advisor

Hello everyone,

MS can be very difficult to live with because of challenges such as fatigue, cognitive problems, vision problems and disabilities (not to mention side effects from medicine).

How is MS affecting your life? and to which extent?

Good day to you all,

Marina

Beginning of the discussion - 10/07/2014

How is MS affecting your life?


Posted on

I have problems walking and sometimes need crutches. If I am just at home I can get around, slowly, on my own, so I practice this a lot. At work they are really nice and understanding of my situation. But I do feel that I am not as efficient as I was before. Also because I get very tired from looking at the computer, so I need many breaks. 

How is MS affecting your life?


Posted on

I know how you feel Julia. I experience constant pain and find I get tired very quickly. I have swapped to a job that isn't as physical but find I am still very busy and active. By the time I get home I am exhausted and just need my bed. I use a stick a lot to help me move about but even with grab bars I have issues getting in and out of the bath and shower, my kids or husband need to help me.

i would love to exercise as the meds I'm on have meant I've piled on weight due to water retention. I used to be so active riding, playing football, walking and swimming and now I can't do anything. I would love some advice on exercise etc.

How is MS affecting your life?


Posted on

Hello Scronti,

Sorry about my late reply. The holidays took over I guess :) 

Well done on taking action and finding another job that fits better with what you are capable of! I also really have to fight the exhaustion at night and I live for the weekends where I can relax. It must be so difficult for you, being used to such an active lifestyle. I was going to suggest swimming since I feel it is very soothing, but I see that you are not able to do that either. I don't struggle so much with pain, so I don't know if I can be of any help here. But have you thought about seeing a physiotherapist who can give you some exercises to do? Also, I am trying to eat anti-inflammatory foods, to steer clear of excess inflammation! 

How is MS affecting your life?


Posted on

Hi Julia. Good to hear from you, I can't believe the holidays are nearly over :(

Eating anti inflammatory sounds like a good idea. What are they?

ive just managed to get a referral to a physio and have my first appointment on Saturday, finally! I've only waited for 2 years lol.

How is MS affecting your life?


Posted on

Hello Scronti,

Ohh, I didn't see your reply until now! As for the anti-inflammatory foods, it's bascically staying away from sugar and wheat. I am not fanatic, but I really try and limit my intake. Almost all processed foods contain some level of sugar, so it is quite difficult to cut it out completely. But I rarely eat candy, cakes etc. anymore. I have also started buying gluten-free bread for instance. It is just as nice as regular bread I find. In this anti-inflammatory food pyramid you can see foods that are anti-inflammatory. 

I really use pinterest a lot to find inspiration for my food, there is a lot of great recipes for both gluten free and sugar free food. for instance, I looove pizza, but stay away from it because of the gluten. But I found a recipe for a cauliflower pizza crust. It took me some months to convince myself to actually try it, lol. Didn't sound very delicious to me, but I tried it and I am sold! It works so well, and no, it doesn't taste like cauliflower :) 

It takes some time to get a good base of recipes, but I really feel that my body is responding to it. And the crazy thing is, the moment I eat gluten or sugar, I can feel that my body gets upset with me! No wonder, when knowing it is inflammatory!

I am very curious to hear how your physio appointment went? Maybe you have gone more than once by now? 

Xx

How is MS affecting your life?


Posted on

hello everyone,hope you are not having too bad a day,and symptoms are calm,i am suffering with chest infection at the moment,and lost my voice,some may be pleased,i am going back to neaurolgy    13 november,havn't seen him for two years,haging in what feels like permanent limbo,not fully diagnosed,feeling very low,as symptoms flaring up,now having vertigo double vision and ,now severe foot cramping in archrches and toes,and left hand fingers curling round,triger finger in right hand,feeling lousy with fare up,memory poor at the moment,suffer parathesia,and neuralgia and,atypical facial pain,since 17,years,now 58 years,can anyone relate,love boz xx

How is MS affecting your life?


Posted on
Good advisor

Oh my goodness, what a lot you are stuggling with bozzys! How long have you had symptoms for? I am curious since you say that you haven't been fully diagnosed, but have seen the neuro 2 years ago, so it must have been some time! Must be really tough to not know what is going on. All my sympathy to you.

I have also had vision problems lately and feeling fatigued. The vision problem comes when I am tired, which of course is often. Typical! I wonder if a seasonal change can affect the symptoms? Anyone with experiences on that? Quite interesting and less stressful (in my mind) to know that it could just be a weather change causing brief symptoms... One could only hope :)

xx to you all

How is MS affecting your life?


Posted on
Good advisor

Hi Boz,

I can certainly relate to you!  I was initially diagnosed with trigeminal neuralgia in about 1978 (I was about 27 yrs old and will soon be 64) although the Neurologist also queried MS, due to him discovering I had decreased power on 1 side, but MS was never investigated - he prescribed a daily dose of 1g of Tegretol (carbamazepine - 250mg 4x a day) and a low dose of Ativan 1-2x a day (which has since been taken off the market).  When I returned to this same Neurologist a few weeks later because the excruciating facial pain had "changed sides" - the only treatment he said he could offer was severing the trigeminal nerve where it entered my brain!  As this procedure was certainly not an option I planned on taking, decided to try acupuncture and osteopathy for a number of months - this practitioner diagnosed the pain coming from my neck being "out of alignment".  I must admit, even after the first treatment, the nature of the pain did "change" but was still quite excruciating and approx. after about 8-9 weeks, I no longer experienced the facial pain but instead experienced a lot of burning, tingling, numbness etc. in 1 of my hands.  Although I continued to have the acupuncture for this (the practitioner stated he was no going to touch my neck again, as this seemed to have "cured" the literally unbearable trigeminal neuralgia), my hand continued to be problematic with no change after 4-5 weeks, decided I could "put up" with this new phenomenon.  All together, I probably had the trigeminal neuralgia for almost 2 years and only stopped the mediations prescribed for this after the facial pain resolved.  During this time, I also "lost" my colour vision for about5-6 weeks, but at the time, attributed this to the medication (in hindsight - now believe this was another "sign" that what I actually had was probably when my MS actually started). 

Since that time, I have had "odd", isolated incidents, i.e. my left knee sometimes "locking" in a flexed (bent) position (I attributed to a cartilage problem) and other times when this same knee wouldn't flex at all, so I had to walk with it "stuck out"/extended, but again thought this must just be an intermittent problem with cartilage.  It wasn't until about 2006-7, when I started to experience extreme fatigue that lasted for months at a time, had a number of falls, trips - chipping the odd bone here and there and began to have problems remembering things.  Some examples being I once forgot how to open my car boot, started "misplacing/not finding things" that I began to think I had some sort of a problem but again, put this down to working too hard, had quite a stressful and extremely demanding job, was getting older etc. etc.  Things really "came to a head" in March 2013, when I woke up the morning following a flight to Florida for a 2 week holiday, when I noticed my left eye had double vision in it, so as long as I kept it shut, my vision was ok!  This double vision remained throughout holiday and the night before we left, began to experience "odd" sensations in my limbs - tingling, pins and needles, weakness, muscle fatigue.......even then did nothing about it (wasn't going to let this spoil our holiday!).  Unfortunately this continued for about 4-5 days after we returned home and it was only when I had experienced an unremitting severe headache for a few days, that I decided I would check my blood pressure and pulse........they were both "through the roof" - 210/120 and a pulse of 125bpm.  I could no longer stay "in denial", believed I was having a CVA (stroke) and had my husband drive me to our local A+E Dept.  A CT scan showed no evidence of a stroke, which was a huge personal relief, so the A+E Consultant asked me what I thought it could be (I hate to confess this but at the time I was still a Registered Nurse although not  clinically practicing but teaching /assessing)............I said, "It's MS"!  In all the years I had experienced such a wide range of symptoms, I had never, ever considered MS (Chronic fatigue Syndrome, ME, Fibromyalgia, Alzheimers, a brain tumour - anything but MS).  I was is hospital for 5 days, had a MRI scan - the "Medics" all believed I had a brain stem stroke but when a visiting Neurologist examined me, he disagreed with their diagnosis, he too was pretty sure it was MS.  This was eventually confirmed after a lumbar puncture (LP - although my GP [and myself] were initially informed that the LP results were "negative" - it wasn't MS, another Neurologist in Dec '13 confirmed it was "Benign MS", therefore I shouldn't need any treatment, I should be able to independently manage this but did refer me to a MS Nurse, although he really didn't think I would need her.   I saw my GP about 4 months later (April'14), just for a 6 monthly medication review, when he re-confirmed I had MS and then had my initial visit to the MS Nurse the following day.   

Any infection will adversely/negatively your MS - make it worse than "usual".  As your last "post" as in Oct '14 (although I have only seen it now - I'm still pretty much of a "newbie") I hope you have recovered from your chest infection an also hope you have either been diagnosed or awaiting tests to correctly identify what you have!  If not, please actively pursue medical investigations/an accurate diagnosis even though I am only too aware of how long this can take.  Please don't give up hope......I am almost positive there are so many people, like yourself, "in limbo", which is so much worse than receiving a diagnosis of ANYTHING!  You aren't on your own, even though I am sure you must feel this and there is "life" with/after having any medical condition.  I'm here for you if you ever want to "talk"...............being "older" and ecstatically retired, does have its' advantages.  Keeping everything crossed for you that things are now or will soon get better. x

How is MS affecting your life?

• Community manager
Posted on
Good advisor

Hello everyone,

It seems as though this discussio has been forgotten, but I think you can have something to share in regards to the topic!

So don't hesitate to comment!

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