Last reply 4 years ago
fed up

How the hell do you explain MS. Geting diagnosed will go down as one of the worst days of my life, a relief to eventually know what was wrong, but then the shock set in and its taken me 8 months to get my head around things, or I thought I had, but, after visiting MS nnurse, I always feel she belittles my feelings, Shes really nice and informative, but, i feel unless you are in a really bad way, then get on with it. Yes, I am doing well, I am looking well, no I am not in a relapse,(I was unsure as read so much and told so much I am totally confused). I can get about, i wobble alot and fall against walls, hold on to things, wet myself, (sometimes), can’t go far on my own, need hubbys arm to link as after half hour of walking, and i really try to put oomph into my step, because I can, but then before I know it, my legs are knackered, I have to hang on to the arm of my husband. I climbed a hill the year before diagnosis, it was something I had always wanted to do, and I am gutted that I cant ever see me doing that again, or if I got up I would most certainly fall coming down again. One minute as high as a kite, then down in the doldrums, and todays a low day.I have no job and have had it said to me, oh so and so has MS, shes in a wheelchair and she still works…yeh, she had her career when was diagnosed, they will look after their employees, they have to keep her on and thats fab that she has the ability and the confidence to carry on, I have always had a part time job, sales assistant, then went on to being a support worker. I did that job for 5 months,but things were going wrong, I cannot do that job anymore.I can’t be responsible for looking after 3 others when my legs are collapsing underneath me. I have applied for a few jobs, with no luck, but in reality, its not so easy. Argh, I hate these days…

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4 years ago

@sunnydaylover , we are all capable of having days like this. Days when the whole MS thing becomes HUGE ! 😯

Allow yourself to have this time, it’s only natural. Life has dealt us all a bum hand and we have every right to feel sorry for ourself.

But, we then get things back into perspective. We concentrate on what we can do, not what we can’t. And we look at all the good things in our life.

So, shed a tear now, then pick yourself up, dust yourself down and start all over again (You can sing that last bit if you like!). 😉

4 years ago

I feel guilty moaning because i’m able and as much as I thought I had ‘got my head around it’, i feel scared today. Our minds are hard work, as bad as my legs!
Thank you

4 years ago

@sunnydaylover , don’t be so hard on yourself. Life can be hard as it is, without throwing MS into the mix.

We all feel guilty and we all get scared. We just hide it well……… most of the time…… 😉

4 years ago

I am sorry to hear the pain in your post & I am glad we all have a place to vent those Fed Up days.

I wish we could all somehow work together to make MS different but sometimes it does help to just say- it is really bad today, this week, this is not fair, it is not right.

Although my MS is improved compared to one year ago, I am in a state of worry over healthcare costs at the moment. I just found out I will lose my coverage at the end of the month but I still need monthly lab work required following Lemtrada.

Ironically my health is improved but I can’t afford to monitor it… You have coverage but poor health at the moment. I guess I want to say that your story provides perspective- health (relative health) is something to be thankful for even in the midst of worry about other things.

I lost my career I trained for due to MS but like you have a supportive husband who lets me use his arm to steady myself.

With all of this turmoil it’s a wonder we don’t all give up, but we don’t- we find a way through and we find support in each other.

This post is rambling & probably has been of no help, but I did want you let you know that I care and I am moved by your story and that I understand what you are going through.

Spend the next sunny day out there in the sunshine- scientifically proven to lighten your mood!

Take care,

4 years ago

Hi @sunnydaylover I think you have an awful lot on your plate at the moment and it doesn’t help having to think about your disability and break it down into can do’s and can not’s .. It’s been said many times before how differently our MS effects us all individually .. we sometimes find we have similar problems in certain areas but how MS changes our lives is a very personal thing.. stay strong hunny and we are here if you need us for moaning/ranting/laughing and crying too among other things 🙂

4 years ago

Hi there, I pricked up my ears when you talked about your MS nurse. It’s my belief that our ability to cope (…. which we do most of the time, remember),is severely compromised by any weak link in our medical team. She may well be wonderful in terms of specialist knowledge and practical help, but she’s not empathetic enough to read your inner fears and thoughts, which – just like the neurological processes – are contributing to your mood. And we know that mood is absolutely key to managing any chronic condition. An encounter with a neuro some years ago triggered low mood in me which took many months plus counselling to change. Your experience with the nurse was likely less dramatic than this, but it sounds as if it’s been deeply unhelpful. A few kind words plus an encouraging attitude, which recognises that you’re working flat out to cope, makes the world a different place. xxx

4 years ago

Hi, you are ALL so wonderful. Thank you for taking the time to reply. I have learnt through the years that the sad times come and go…just trying not to be consumed by MS. I feel like I have so much oooomph, I want to run, but I can’t, but gota be thankful I can walk, but crikey it takes some time to get your head around.

Thanks again, xxx

4 years ago

spring is only a month away. Stay strong!

4 years ago

I was diagnosed 12 years ago I had been struggling for years with balance issues I feared the worst I googled all my symptoms was convinced I had a brain tumor or worse so MS was almost the lesser of all the possible outcomes
I have deteriorated since then I have gone from RRMS to SPMS I also have foot drop which causes me to stumble and fall quite a lot I now have crutches to help my walking which is rubbish I have a wheelchair for times I am really bad
I still work fulltime I have a desk job so my mobility is not a problem at work
I used to be a motorcyclist but sold it as it worried my wife when I was out on it that upset me more than getting MS

4 years ago

I’ve been feeling the same. A FB friend nominated me to name 5 things that made me happy and it was only then that I realised how sad I was feeling.

I had a treatment review and I told the consultant that I was feeling sad and guilty for feeling sorry for myself when I look completely normal. He said there were many causes of depression but that the avonex was probably making it worse.

I’ve changed to tecfidera today, two doses done and feel good. No more needles…bliss

4 years ago

@wilf, you have to stop blaming yourself and believing that just having good thoughts will win the day. There are real physiological changes afoot that accompany MS and are compounded by most of the medications that we need that can be responsible for low moods. They are real and need treatment to balance the effects just like you use antibiotics for an infection. Left uncontrolled, it can set up a vicious cycle involving pain and fatigue which are also symptoms associated with MS. It took me a while to come to grips with this and can still occasionally trouble me. Your pain is palpable and I have been there and hope you get better. There is no one to blame, but your MS! Switching to tecfidera is a smart move for a lot of reasons. I participated in a clinical trial for it for 1.5 years and moved on to gilenya after developing a sensitivity to tecfidera. I would seriously consider lemtrada to prevent future leg weakness you mentioned. I am dealing with that now even after taking years of the other drugs. @us-emma is putting together a presentation that will describe the available therapies in understandable jargon. Be sure to review it when available to better appreciate the risks and advantages of the leading therapies.

@pavo I have used ampyra to address the types of mobility issues you have described. I learned about its remarkable benefits even before it was available as a prescription and used the compounded version of the medication. It works for a large minority of patients, but for me was a wonder drug. I can miss a dose even now and develop foot drop later the same day. It is approved for all forms of MS as it is not a disease modifier. It helps the damaged nerves of potentially any MS patient to transmit signals better helping many aspects of MS, but only proven to help increase walking speeds just to make a simple test for quicker FDA approval. My experience after 8 years of use is results will be obvious in 3 days or it is not likely to help you. The worse side effect for most can be insomnia which can be reduced by adjusting dosing times. It is an exciting drug that is often overlooked.

4 years ago

Ampyra, mentioned above, is now marketed under the name of Fampyra, or Fampridine.

In the UK, NICE have decided against approving it, but don’t let that prevent you from asking your Neuro about it.

4 years ago

In the US, it is marketed as Ampyra (pronounced “am-PEER-ah”) by Acorda with the generic name of dalfampridine. I forgot about the marketing brand name difference for the other markets. I started out getting it compounded as 4-AP and the good news is it was very affordable and worked really well. It required a prescription and is not timed released like Acorda’s which took them almost a decade to bring to market and is very expensive.

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