Last reply 6 years ago
benign ms

I was diagnosed with ms in February..my neurologist describes it as benign so I almost feel like a bit of a fraud as on the outside there doesn’t seem to be a problem and I am sure some people have trouble believing me.Most of my symptoms have gone since my last episode this time last year.I know we are in the minority but would appreciate anybody else who has had a benign diagnosis getting in touch.

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suehomer
6 years ago

I also have generally benign MS (lots of numbness – not too much of a problem, but only one acute spastic attack). I’ve had it for 14 yrs. Everyone I know knows I have it, but I often feel like a fraud. And I often get the impression that people think I use the MS as an excuse, which I don’t. I just know my limitations. I don’t have a ‘proper’ job, because I know it wipes me out and I can’t have any fun outside of work. I choose to have a life not a job. Lucky me that my husband can (currently!) afford to keep me. I felt terrible listening to all the callers on the radio this morning who have a really bad time with MS, and realise how fortunate I am. I don’t know about you, but not having many symptoms doesn’t take away from the fact that it’s ALWAYS there in your head. I’m much less stressy about it than I was for the first few years, but there’s no getting away from it, it’s there, and however ‘normal’ you look to everyone else, you know it’s ever present for YOU.


jenko1972
6 years ago

Hi,

I was diagnosed about 2 years ago, it started cause I had double vision. That’s cleared up and now thankfully have very few symptoms. I have a real slight balance issue ( which know one would notice ) and I laugh a lot sometimes at the wrong times. Erm not sure what I’m trying to say but it is always there and its potential never leaves me. I am just so thankful that at the moment it’s not a problem just a big concern.

Best wishes

Neil


choozysuzy
6 years ago

Thanks Neil,you hit the nail on the head ..that it is not a major problem just a big concern.That’s very much how I feel,I forget myself sometimes that I have this condition,so I expect it is hard for others to remember.Sue..I too always feel dreadful when I hear about people who have a bad time with MS.Even though my MS is not progressive,it is always there,and who knows what it could develop into.I am certainly going to try and live as healthy and stress free life as possible ..I have too much I want to do in my life yet to let it control me.
I have had 2 major episodes of which I am aware in the last 3 years and most symptoms have gone apart from tingling in my toes and underneath my feet.I overbalance very easily and even though I have lived in the same house all my life I walk into doors,and my co-ordination sometimes goes haywire.All these things I now know to put down to MS,when I just thought it was me.
Has anyone followed the swank diet and has it helped?


suehomer
6 years ago

You have to tell the DVLA and your insurance company. The DVLA need you to fill out a medical form which your doc needs to sign too I think.


choozysuzy
6 years ago

Joogar..thanks for your comments.I have never had a problem telling people about my diagnosis.I practised saying “I have MS” for almost 6 months whilst I was waiting for a diagnosis,even though I was still gutted when I got the letter through my letterbox saying the MRI supported the clinical diagnosis the neuro had discussed with me.
As far as I was concerned my first episode was january 2009,when I started to feel a tingling sensation in my toes and gradually over a number of weeks crept up my body up to my bra line.My doctor referred me to a neuro ,which was gonna take 4 weeks and at this point I was finding it difficult to walk.To cut a long story short,I had a MRI and the neuro I paid to see diagnosed transverse myelitis.The symptoms went away over a number of weeks ,just as they had come,Then this time last year I started to have the same symptoms and after numerous investigations I was diagnosed in Feb.In my heart I knew this was the case.I suppose we are lucky that mostly our symptoms go away.I just tell myself..my neuro reckons I have had this for 10 years or maybe more…and it hasn’t progressed,it isn’t going to kill me and has hardly stopped me doing anything.During my episode last year I travelled the length of Germany by train seeing a rock band .I basically refuse to be beaten by it.


funnybank
6 years ago

my first ten year were pretty benign, second ten years not so much, have to see what happens in the third ten years


min
6 years ago

How bizzare – listening to Jeremy Vine discussing MS – I learnt more from that programme than anywhere else. Especially the bit about MRI not really being available 20yrs ago. I went to the GP 20yrs ago with “pebbles under my feet”, no explanation from GP.
20 yrs later went to GP with numbness in hand,sent to neuro, MRI scan,blood tests etc and had benign MS.2yrs later had dragging/limping leg and was upgraded to secondary progressive.
You guys are my main source of info/comfort/levellers. Thanx!! 🙂


jaimie
6 years ago

hi im currently in the process of being confirmed with having MS, IM 23 and currently on a year out in australia, couldn’t be further from home.
But i feel the same to as after my second attack just gone where i had tingling numb feet, hands and central body, i now feel good again, apart from a little tired. so when the doctors talking about medication i feel like im not the right person. a fraud. its a very confusing disease.

what made up peoples minds about wether to have medication?

iv only had a month to get my head around it so perhaps time may help. im glad to hear that this is something others feel to. thank you


suehomer
6 years ago

I think it depends where you live. I have never been offered anything. Was amazed when learning about this site recently to see so many people talking about lots of meds – when I asked my GP recently if there was anything he said nothing had changed in the last 14 years since my diagnosis and there was no need to see a neurologist! I’d just had a nasty acute spastic attack! Postcode lottery strikes again I think! Anyway, I’m ok again now, so maybe he was right.


suehomer
6 years ago

Agreed! No need for meds for me at the moment. But it would be really nice to talk to someone who knows something about MS, which my GP clearly doesn’t!!


jat721
6 years ago

Hey, I’m on Copaxone. I was diagnosed in Feb, started injections in March. It takes 6-9 months to even really hit your system. I’ve been told and have read that MS is extremely unpredictable, even if you start very mild, it doesn’t mean it’s always going to stay that way. Most people, from what I understand, will eventually lead into secondary progressive MS. MS injections, which there are several options are supposed to reduce the number and frequency of relapses you have; it doesn’t however make you improve or go back to the way you “used to be.” I know, since it’s an unpredictable disease, who really knows just how effective they are. However, I know once you do have a relapse, there’s no telling how quickly and how much you will “bounce back.” So I feel like I would like to do what I can to help prevent the relapses. I don’t want to wait to find that my health gets worse then start taking the drugs, cause it’s not going to bring me back to how I feel now, it’s just going to slow the process down in its tracks. I figured I’d like to slow it down while I can still do mostly everything I used to do. I don’t know if that makes sense. I also don’t know if my explanation is correct, that’s just how I understand it to be.

I do, however, hate taking the injections. The only side effect, and most common I’ve had with Copaxone is injection site reactions: Bruises, hard bumps under the skin, stinging, soreness. I do dread taking them every night, however, I’d rather do them and hope to maybe postpone using assistive devises.

I’ve also started reading up on diets like the swank diet. I don’t know how I’d every really stick to it cause my diet consists of cheese or dairy on EVERYTHING!!! I don’t see the point in eating cheese if it’s non-fat, yuck! Anyway, I’m going to start with reducing my fat intake, and increasing my fruits and vegetables, we’ll see about the whole no cheese… and no ice cream… and no chocolate… really, what would be the point in suffering like that! 😉


jaimie
6 years ago

yeah i understand your description of the prevention drugs, and that is exactly what im getting my head around. Ill be asked wether i want to start interferon’s with my next appointment, and obviously i dont want to have many relapses as this last one has been very disrupting and scary.

its just odd when your on the mend and its almost a silent disease with no real known pattern and to take drugs that may make you feel worse. but i do understand, at this point it means coming to an acceptance that this is real and there is a real side of the decease that could drastically effect my life. i have to start taking the drugs with 100% forward push.

oh and on the diet side im already a vegetarian so cutting out meat is done but i find the dairy hard too!!


katten
6 years ago

Hi I was diagnosed 6 years ago and have a relatively benign experience suffering mainly fatigue and strange sensation symptoms.
My latest MRI show changes and an increase in the number of plaques in the brain, so although i feel ‘fine’ in as much as an MSer can feel fine, I have now been prescribed Interferon with immediate effect!
It was pretty scary indeed! Just like some of you guys are discussing here, why take some meds that will make you feel worse with side effects than I currently do. It was a huge thing to get my head around in a short space of time. But I have done it and have taken 3 injections so far. Very early days but I have not really had any side effects so I would say that the FEAR of side effects is ramped up and the reality is quite OK.
I see it as an insurance policy to possible future disabilities, There has been much research in this and it continues, I think medications will become much more effective and user friendly in a short space of time. (fingers crossed)
Sue Homer: I wanted to say to you personally, GET ANOTHER GP! I am quite shocked that your GP would say that there have been no advancements in the last 14 years, there has been HUGE leaps in research and meds. I am not saying that you would qualify for any meds or even if you want to take anything considering the good state of your health but you should at the very least be in touch with a Neurologist on a regular basis. In fact hospitals these days have whole teams of people to support MS sufferers. Please go and see your Neurologist or MS nurse and get an updated opinion of what is available to you. I wonder which city you live in ? All the best x.


suehomer
6 years ago

Hi Katten – I’m starting to think that too! I live in Buckden, Cambs. We have a big MS therapy centre in Huntingdon which has a nurse 1 morning a month apparently, so I think I will go and see him/her to see what current thinking is. I seriously have never seen an NHS neurologist! I saw an expensive private neuro just after I’d been diagnosed, who really just confirmed diagnosis. I had been 11 wks pregnant when diagnosed and, because of lack of info, had terminated my pregnancy. He was bemused as to why I had done this! Fortunately, I have an amazing husband, and he and I got through it all together. However, even though I have asked to see a Neurologist just because it’s been a long time since I was diagnosed and my symptoms come and go like most people’s, mostly mild but the one v scary spastic attack, my GP says no need. I suspect he may be thinking of the bill for his surgery! He’s a nice chap, and I suppose he’s right because I haven’t got significantly worse, but he doesn’t appreciate the ‘worry factor’. I get by day to day with a healthy dose of denial and I don’t get too tired or stressy as I don’t have a ‘proper’ job (don’t get me started on that one … – I can’t tell you how many of my friends tell me over and over how lucky I am not to have to work … hmm – MS … lucky?? Whatever …) x


katten
6 years ago

Hi Sue
Just rereading all your comments here:) You are not a fraud just because you don’t have as many symptoms as someone else. You have a valid illness and it seems to me you have been very practical in the way you have been managing it, reducing stress and knowing your limits work wise. That is great but you do not need to manage it all on your own, there is great medical support too and I would think that Cambridge has a wonderful service. The MS therapy center in Huntingdon sounds like a great place to start, they may even be able to help you get an appointment with a neurologist, if not then go to another GP for a referral. Your GP may be a nice man but it does not sound like he has YOUR best interests at heart. You deserve to get proper advice from a professional in MS. It is great to hear that you are not getting worse 😀 But it does sound like you have some symptoms that you could do with some help and support on. Even some reassurance goes a long way.
Did you ever have an MRI or lumbar puncture? If not you should definitely try to get one so you can get a better idea of your situation. It is also a good way to measure any changes by having an MRI every few years. This is available on the NHS too, but you need to be a bit firm in asking for this because of course health services are always trying to find ways to save money….
The MS team can help you with aspects such as worry, exercise, help aids, physio, counselling, advice…its not just about taking meds. I too do not work ‘properly’ and understand how this makes you feel disconnected from the world and even though it sounds nice on paper in reality it is very lonely and can make me feel like I am not respected. A job is like a badge which says who you are, like an identity but if you don’t have that then who are you? Its quite a big thing. And pretty hard for friends to grasp because to them you look healthy and just get to stay home all day. But I think you can find a lot of support through the MS therapy center as they understand all these issues.
Good Luck and let us know how it goes x


suehomer
6 years ago

Good advice. You sound like an awfully sensible person! I’m glad to have found shift ms so I can hear from people like you. I get very upset by my friends sometimes, and perhaps I should cut them some slack in my head and not let it get to me because you’re right – to anyone looking at me from the outside, there’s nothing wrong with me. This disease has screwed with my head a lot worse than my body, which I think is the better option all things considered!


katten
6 years ago

I am sensible yes, but I too am screwed up in the head over the fact that I have MS! It is not an easy thing to deal with at all. For me too I feel the psychological side has been worse than the physical, Its so frustrating to not be able to explain to people how I feel and get them to understand fully as I look perfectly healthy too. I agree with you that it is the better option and we are very lucky on that score, but we can still get help and support and strive for a healthy mind too.

I also think that this website is fantastic, it’s good to share our feelings and swap tips and experiences. Lets hope that this is the start of the road to a better life living with MS 🙂

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