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Would like Consensus Advice for recovery plan

Hello all,

My name is Adam. I am newly 25. I am in dire straights right now (and have been for a while). In response to this, I would like to establish a recovery plan. I am new to my disease (diagnosed at 23) but I have been severely affected. So, I was hoping those more experienced in dealing with this condition could offer support to me in producing this plan.

To begin, I will briefly (as I can) describe my scenario:

-Diagnosed July 2012 due to loss of sensory feeling and impairment in fine motor movement in in left arm. Diagnosed after MRI and LP. Prior to this, I had a weird numbness in my left arm which did not bother me much so I ignored it and it went away.

-Was given steroids and recovered, returning to work, in Sep 2012. 100% back.

-Stopped work in Jan 2013 due to similar issues as before - but in right hand. Put on Rebif after talking to MS Nurse about attack

-At some time around May, I had issues in my right leg. I had drop foot after walking distances. Told MS Nurse, who identified it as a relapse. I was told I would recover. The fatigue induced foot drop (which I’m told is ‘clonus induced’) started me off staying inside.

-In Sep 2013, I had a serious relapse which affected my left leg/both legs/core. I was kept in hospital for 42 days. I was partly taken in due to a phone call where I talked (screamed?) about wanting to commit suicide. I’d quit rebif as it didn’t help me. I was put on tysabri (JC+) and given IV steroids. I had physio in hospital and given some appropriate excercises.

-About 2 months ago, I had physio. Home physio gave me one lesson and identified my problem as fatigue. It is, I can walk fine at the start of the day, or when 100% rested. I had also been given a hospital physio appointment then, too. Home physio told me to go to hospital physio for fatigue help. I did, and was assessed one week and given one physio appointment where I was given leaflets on fatigue and that was all.

Bringing me to now. At age 24, I didn’t go outside but to the hospital (with transport). I am housebound. In these times in hospital I had a total breakdown where I was sectioned for a few days and was rude to staff. I believe I have distanced myself from the MS Nurse with my craziness, too. I do not have to see her apparantly, as I’m in for infusions. I’m supposed to see Dr Ford, my MS neurologist, but this hasn’t happened in 8 months or so - but problems with transport not coming for me made some of this happen.

In all honesty, I’m on the edge. I have no family so I live with (and am cared for) by friends. They grow weary of my anger and help needs, I believe. I have been told by my housemates they are going after the next year (as we signed a tenancy). I find it hard to recall the outside world and how it was to walk it.I will be alone then. It is a chilling prospect, but I must persevere and change my mindset now.

I thought I’d recover again as I’m so young and I’m RRMS. As it’s played out, I was housebound in less than a year. A wheelchair being necessary seems so brutal after so short a time. (This is purely a self-pitying bit of information to add, but I was raised in a cult from birth where I wasn’t allowed to play outside or enjoy friends. I left this at 19, which is why my family have cut me off.) Are there no options?

Any health care/medicine/whatever advice would be truly appreciated.

To add, my right arm recovered in July and my left leg feels more recovered than the right.

Hi Adam,

Here goes, your story is in your text, horrendous, but it seems you are still at the “Very angry” stage.

You can not expect to form a recovery plan, you have to wait and wait and wait, to see what happens. MS is so unprodictable, every person is different. There is no set pattern, especially for recovery. If there was we would all be there on it.The least thing in you need in your life is stress, this may make things appear even greater.

I was diagnosised in 2001, I had a number of relapses before but recovered, without knowing it was MS. When finally diagnosed, it was like my life had gone. My work (Don’t get me started there!!), my friends, my family and finally my wife. I blamed them all. Everything in the world was wrong and I got it.

You need to accept your condition, it will always be there, you just need to work with it. Most members of this site have or are going though the same situation as yourself, you are not alone.

On a positive note, life is what you make it. If you can and most importantly is you need to talk to someone and I mean talk.

Contact your local MS branch, they can provide assistance in a number of ways. Access to social events/meetings, possible they may have a young persons group, that you can go to socialise with people your own age, the same problems, and not be reliant on your flat/room mates.

I am 51 yrs old my wife saysI act like a 25ish. Life does not end because of MS ,it just works out differently than what you thought.

Also your local branch maybe able to help when your tenancy is up, re-locating and proper advise for your situation.

Thats all I can say, Its up to you.

I amhear if you need us. Andy

I think you’re right to identify that I’m in the ‘angry’ stage, really. I have assumed this will pass eventually, though I think it may need a bit of work, too.

I am talking to a psychologist who is a helpful guy, but I’m too preoccupied by the practical issus affecting me in my life to feel the full benefit.

I took to contacting my MS Nurse regarding this. For whatever reason, she doesn’t want to deal with me any more and so I was called back on my answer machine message by a nurse who works in the infusion room.

To be honest, this made me very mad. I am being denied access to the MS team with no explanation. She made me very angry on the phone as she just kept asking me what I wanted them to do. I said that I wanted help with my situation and she kept asking me for specifics. I told her that she was talking rubbish and it wasn’t my place to tell them - rather it’s vice versa.

I got really mad when she was being a bit moody too. I was looking for treatment for my fatigue and she broke the news to me that there was nothing to do but a ‘fatigue management group’. Fuck that, it’s not as simple as that for me. I find it a bit tiring after a full day in my house, really. I don’t really do anything. I asked her why no one informed me of this fact and if she realised she’d basically said I need a wheelchair. She suddenly pounced on that and kept asking about a wheelchair. I was sectioned about a year ago over suicidal behaviours and I don’t leave the house and she talks to me like that!? I revisted my suicidal thought patterns after that call and it’s really hurt me.

I was always an advocate of the NHS but I have to say it has let me down. And in Leeds believed it was one of the better places to be, really. I was hoping that there was some medication or whatever to help me with my fatigue. Now the only member of the Neuro team I will see is the psychologist.

Hi Adam, Sorry for everything you are going through. Welsh pony has given you some great advice above. I do hope the ms helpline and branch can offer you some concrete help. What I can offer is just my personal story, as you have shared yours. I went through the extreme anger phase when I was diagnosed at 23, as well as suicidal thoughts. Therapy and taking control of what I could still control got me past this, but it did take a couple years. 11 years later I still get angry from time to time, mostly out of frustration of not being able to do some of the things I thought I would do in life (though I have done other things that have brought me great joy) Sometimes I am just downright sad. And that’s ok I think. At the moment I will let myself have a 15 minute sob or scream, and then I try and pick myself up and move on with my day. Not always easy, I know. But I try to channel my outbursts so they don’t affect my whole day. When I was really going through hell with my two worst attacks what helped me is not trying to recover all at once. With my first attack I lost the ability to walk and use my hands. So, I focused on walking first, getting to a stage where I could get down the street and back. Then I worked a few weeks, just doing stairs. Then I would sit at my piano, playing scales (very badly at first) until it resembled something that could pass as music. Then I started thinking about going back to university. Now that my disease has changed course I am slowly, one by one tackling the new challenges in my life. Fatigue was a new one for me and the one I wanted to deal with most. I have started modifinal and this has really helped. It is possible that your gp could prescribe this if you aren’t getting on with your MS team at the moment, or they are driving you crazy as it sounds like they are. At the moment I am just focusing on dealing with my fears and anxiety about professing, learning how to manage these (meditation and yoga are helping me on this front, but everyone is different). Part of this is trying to decide on what medication to switch to, but even here I have a list, people I want to consult, specific concerns to deal with regarding each treatment etc. Then I will tackle the next big issues of how this is impacting my relationship and my career (both at present and in the future). I can’t deal with all of these at the same time so some stuff is just going to have to wait. Now, these might not be the things you need to work on, but perhaps trying to resolve one issue at a time instead of dealing with your situation as a whole might help. Small victories will give you the strength and self esteem to deal with the next hurdle. Wishing you well. J

Oops, I meant ‘progressing’, not ‘professing’ (though I have been known to to the latter from time to time too!)

Hi Adam, your situation is a bit more unusual from the nearest thing there is to typical MS…the only thing typical about MS, is really that there is no typical way it behaves. Yes, there are lots of symptoms that most people will have at some time or perhaps all of the time.

It seems to me that due to your outbursts of anger at the NHS, they have used their own ruling and will not put up with any form of aggressive behaviour. You have admtted to us that you have displayed aggressive actions. This is the most likely reason as to why you feel let down by the very body who would/could help you.

Hopefully, when your psychologist has worked with you for a while, you will learn how to cope and control your anger and behaviour and then there will be more offers of help to you.

Now about a recovery plan. Once diagnosed with MS, you have to accept that it is with you for life. But havign said that, there are ways to cope - to accommodate it into your life. You didnt ask for this hateful condition to be part fo your life. No-one did! Nevertheless, it is with you, as it is with thousands of others. Everyone hates that their lives have not turned out the way they had hoped, but somehow, they manage. And I know, it truly IS wful…BUT…we cannot run away from it.

I was wrongly diagnosed with PPMS for many years. The neuros passed me from pillar to post. I too felt angry,hoodwinked and beside myself with frustration…carers

I had to get my head round it for the sake of my family. I found marvelous help from physios, OTs, district nurses, my GP, carers and others.

I hope that in time, your anger subsides and you feel calm enough to receive help like I did.

pollx

I think it’s a fair point that my anger has distanced me from the team. I will try to address this but I was treated to a poor standard by the team and raised these concerns. And it annoys me when people talk shit tbh.

I appreciate the emotional support offered. In my aims for this thread, though, I was hoping for practical steps towards recovery from you all. I called the MS Society regarding medication and they advised me that there are a number of potential treatments that are all kinda tough to get. Does anyone have any advice regarding these fatigue treatments/how to procure them?

I don’t fully understand the different types of fatigue, but mine is the one where I walk normally when 100% fatigue free, but it will degrade to the point where I cannot walk very quickly.

Hi Adam,

Just to let you know “The Angry Stage”, never goes !! It comes back ever time you can’t do a simple task and have to rely on someone else.

You need to start the acceptance stage, hopefully with the Psychologist your talking to will help.

I think you need to unload onto someone and this maybe the best opportunity to do so.

We, on this forum can only give you our stories and email support with our experiences.

I have a friend who’s really bad and has suffered from a breakdown, he goes to the PTSD group (ex servicemen), and he unloads onto me regularly, usually it is a one-to-one-face-to-face chat, in the pub, but since he has been going to his psycholoist and taking his meds, has been a hell of alot better.

I hope you are able to win your personal battle with MS, we are all fighting it in our own way.

Yours Andy

Hi again.

Mediation for fatigue is probably very rare.

I once asked it years ago and was put on amantidine. It caused severe constipation, so I came off it before I had time to see if it actually worked.

I have read other people use it here. Perhaps they will tell you if it helps them.

I guess your type of MS is the RR type yeh?

Quite a lot of members here use injectable medication, which does help them by reducing relapses and disability.

It would be a neuro who puts you on it.

pollx

Hi Adam

It’s truely horrible isn’t it and I wish I could give you a big cuddle

When I first got ill, I was incontinent I lost my eye sight I could not walk and I was like a helpless child and I stayed that way for about a year But…I recovered, my illness went into remission I am not symptom free but doing pretty well I’m not saying that will happen for you but you have recovered before and there is always hope especially as you are so young also there is a strong possibility of a cure becoming available in the not too distant future. I didn’t ‘DO’ anything to get my remission. I was not on any special diet or any drugs it just happened I am not special or different to anyone else , things may get worse for you but they might get better, I was told endlessly that I had false hope but for me false hope was better than no hope

Take care

Mully

Modafinil can help with the ‘cog fog’ that turns a person into an inert lump - it certainly helps for me. But I do not think that there is anything out of a bottle that can help with the kind of neurological fatigue that makes the leg that was working this morning grind to a halt in the afternoon, or after so much exertion, or whatever. Or if there is, I haven’t found it. The only thing that helps that is an energy-management regime and recognising when it is going to happen and working around it. If the MS nurse was getting cheesed off with you wanting meds to address something that there are no meds for, that might explain in a bit. Doctors and nurses are trained to fix things and to make people well and functional again. MS and similar chronic progressive conditions are a real challenge to the mindset that permeates their training programme, because they can’t fix it, and they don’t like that any more than we do. I think that this cold, hard fact causes a lot of interpersonal trouble and mutual frustration and misunderstanding. So it’s not just you! Try to remember that they would really, really like to fix your problems, but there isn’t all that very much that they can do, beyond putting you on Tysabri (as they have done for me too) and they’ve done that already.

Alison