Wednesday, 13 July 2016

My advice is stay OFF MS Society message boards, as it appears to be some kind of CULT, shame on them

New and confused
Hey guys,
I'm not really sure how to start this is very new for me, but out of any of this I'd like to at least make some friends and support any way I'll try and keep a long story short, I have had a little symptoms for a while which docs put down to my other meds, so it started with quite a bad headache and feeling really tired, I've been quite unsteady on my feet for quite a while which again put down to meds, as my headache got bad I woke up one morning and the vision in my right eye was quite blurry and by 4 that day I could hardly see out of it, went to a&e she said it was a migraine later found out it wasn't by the optician that I saw a couple days later he was concerned and I had an emergency app at hospital 2 days later they diagnosed me with optic neuritus to which I had an mri scan a couple wks later they said I have a couple lesions and lucky to be MS I waited a month to see the neurologist he then told me I have relapsing remitting ms and have 12 lesions in my head, I found this out maybe 5 wks ago, I have been trying to avoid talking about it but I'm struggling, and would like people to talk to make some friends and support.
I haven't told anybody other than family.
Topics Emotional support
hi emz
sorry you have ms but it's not the end of world.
at least you now know what caused your symptoms.
you're welcome to send me a private message.
if you have an ms therapy centre, go along.
they are fantastic places.
i go for coffee and chat with the others and then have HBOT - Hyper Barric Oxygen Therapy.
whereabouts are you?
i'm in bolton and go to trafford ms therapy centre - about 15 miles away.
carole x
Hey catwoman,
I know I'm glad I at least know what the issue is, I'm just a little scared I think I haven't let myself think about it, which is probably the wrong way to go.
If you don't mind me asking how was it for you when you found out?
I'm in Somerset and have only just had my first visit from the nurse etc, yeah I was told that the meets are a good thing and will help, chatting to people with the same condition which I will do, being able to chat on here is good as well. X
I have MS
I'm so sorry to hear of your problems but you have come to the right place.
There are some great people on here with good advice and most importantly a lot of people will understand. MS is so different for everyone and trying to explain that to non MSers is difficult.
You are certainly not alone and when you want to shout, scream, laugh, cry or just talk about anything then you can do it here. People will understand.
Your issues are similar to mine so as I say you are not alone. As time goes on you may want to look at DMD's, possible pain relief etc. Of course your nurse and neuro will advise you but you can also get information on here.
All the best to you and remember 'you are not alone' xx
Hey pops,
thanks that means a lot, I haven't been able to tell anybody yet can't seem to get the words out so hopefully speaking on here and make some friends will help.
that sounds very much like how I'm feeling I'm either laughing when there's nothing to laugh about or getting really angry almost to the point of starting an argument and that's not like me.
I've had my first nurse app she gave me some info to look at which I will, I'm hoping this site will be a good support and create friendships for me.
If you don't mind me asking when did you find out you have this?
x x
I have MS
I was diagnosed in September of last year. I had 5 relapses before the final diagnosis. Rather a shock as it all started by dropping a cup of tea.
I've had both hips replaced and spine surgery so this just added to the problems but its so different and so frustrating. I'm in my mid forties, married and two teenage kids so not an ideal time to be struck down with this.
I have Tysabri infusions every 4 weeks which has reduced the number of relapses and I'm still working.
Shout if you need anything or just want to chat. Its hard talking to people who don't quite understand and if one more person tells me 'you look well' I'll scream.
All the best xx
I have a 7 month old pup sharpie x ridgeback, and I'm finding it hard to look after him, not sure what to do. X x
I have MS
Its your decision emz but personally when I'm having a bad day, my wife is at work and the kids at school its quite nice to have my spaniel, Harvey, keeping an eye on me and being my little friend xx
Hey pops
sorry it's a bit late, wow 5 relapses that must have been quite scary for you, I'm early 30s my neuro says I've probably had it for a couple years with several relapses in between, I'm very unsteady on my feet needing to walk close to walls and had to get a new kettle one that I don't have to pick up sounds silly I know but my wrists give way and I tremor quite a lot, I've been with my other half for a year this wkend so it's still a learning curve for us both he is supportive but doesn't understand it, I can't deny I don't either, that is the treatment they want me to go on, apparently you can feel a little crappy for a couple of days after it, it's good to know that it's helping you though, unfortunately I'm not able to work at the moment. I get asked that question by my other half and my mum worries a lot bless her but sometimes I simply don't have an answer for them, my head is filled up with so many emotions I'm angry and wanna scream and chuck stuff, other times I want to cry but I won't, and other times I just want to be quiet, aw that's nice a spaniel Harvey is a cool name, mine is called bear, he is a cutie buy constantly at my feet I trip a lot around him, sometimes I need a bit of space. He is a strong little dog and over powers me ten fold. X x
Hi Emz x x your not alone in how you feel, I have been feeling very similar to you over the last 12 months. Last year and probably a little bit before that I had been feeling out of sorts, sore heads feeling really tired all the time then I started having numbness in lower back and legs and tingling in my right arm and feet. A  minor bout of Bells palsy followed of which the palsy went quite quickly after few weeks but other symptoms remained and others appeared. I had an MRI last Autumn and these showed vascular lesions but neurologist was at that point not committing himself to any definite diagnosis. But as you can imagine alarm bells are already going of in my head. A follow up MRI was done in January this year on my back and neck and these show evidence of inflammatory myelitis and demyelination but still no definite explanation given at this point. So those results have prompted a Lumbar Puncture of which I had done this week along with some VEP tests and hopefully now I will get some answers from these results. So I am very much in the same boat as a lot of others displaying all the symptoms but not knowing if I have MS or not. Only my family and close friends know what I'm going through and I have yet to tell my work colleagues, though it is becoming increasingly difficult to hide the way I'm feeling day to day. 
Hey Kevinhives,
thanks for taking the time to msg me, it is I little scary people kept telling me I can do this that and everything else but all I could say was I really haven't got the energy, I don't know why they put it down to I can't be bothered, I feel quite useless, if it wasn't for the optician and getting me to hospital within a couple days I would be none the wiser, I hope you get some answers soon, mine took a few months which felt like a life time and you waiting as long as you have is very patient, my moods are slightly out there at the moment, I have been given all the leaflets etc but I can't bring myself to look at them yet I just tried I turned a couple pages then put in down, the neurologist wants to get me started on treatment as quickly as possible which I understand it's just so nerve wracking for me, I suffer from depression and anxiety, my family know but no one else yet, just not ready for that, it might make it easier for me to accept to tell the closest people to me but I'm a very private person, and at the moment rather talk to people that understand. How are you coping with it all. X x
I have MS
Emz and Kevin
Don't know if it helps and I know you are going through tough times and are private people but I found that telling people of my MS helped. You may be surprised how many people know people or who have someone in their family who have MS.
Since my diagnosis I now have a group of friends who all have MS, some having the same DMD as me and all understand what you are going through.
Its your choice but it helped me to tell people xx
Hey Emz xx thanks for the quick reply. I'm of the same thought it's a lot to take in and it makes it even more frustrating that there are no definite answers to any of my questions and tests and appointments and results take forever which adds to the frustration. It's put a massive strain on not only myself but my family as well. My children are to young to understand and they just think Daddies grumpy which of course is just not me. Iv pretty much alienated myself from my closest friends as I'm unable to do the things I used to enjoy on a regular basis as I no longer have the energy to participate in any of the things I used to do. Days out with the family are short lived due to fatigue again. My work have been very good with letting me attend appointments and only management  are aware of the seriousness of my symptoms as yet. Ive been over 12 months now without a definite diagnosis and the longer it takes the more worried I get. Hopefully the results from my LP will finally reveal some answers. 
Hi Pops thanks for the support its greatly appreciated.  I'm preparing to tell my work colleagues as most of them know I was having a LP this week as it fell on my birthday of all days but there was no changing the date as it meant I would've of waited months again for an appointment. I know myself I'll feel better once I tell people that potentially I may have MS. 
I have MS
Hello emz,
I picked up on what you said about mood swings, laughing or getting angry without any apparent reason. This is something quite common with us and one of the least understood symptoms.
My wife has had to put up with a lot of my temper tantrums which, as we are together 24 hours a day, means she gets the full force of my frustration every time. I say 'frustration' but no one knows if this is just a feeling of being pissed off or a bio-electrical event in a damaged brain. Either way I have to do a lot apologising.
As long as you can recognise it at the time it can help control your outbursts. As well as antidepressants I also use meditation and Tai Chi for emotional balance and 'mindfulness'. And if your partner understands it's the disease making you blow and nothing to do with your relationship, that will also help.
Pops is spot on; this is the place where there's always someone who'll have experienced what you're going through and will understand. This forum is the best thing to happen to me since my diagnosis.
I'm 60, was diagnosed six years ago with PPMS and I live in Epsom. My first symptom was optic neuritis. I went blind in one eye and it took about nine months to get better.  I dip into the forum most days so I'll be looking out for you!

Hey Kevin and pops,
Kevin it sucks that it's landed on your birthday but at least you'll know, it felt a little scary the day the nurse at hospital told me it's likely that I have MS that day I was heading to London for valley day so that was a bit of a clanger, she said I'd probably have to have a LP but when I seen my neuro he said as there are quite a few lesions and my bloods came back that I didn't need one. My mum is so nervous for me coming to my house and helping out bless her, my family are putting up with so much from me at the moment I don't realise when I'm being nasty etc but they don't try and fight me with me back which I appreciate but they shouldn't have to put up with it. x x
It would be nice to have friends that are also going through this it makes it a little easier to talk to about life, I found a page on facebook but as it's public I'm not ready to put myself out there that much I'd be more comfy having a group chat and 1 to 1s. x x
Albrecht Durer,
Thanks for the msg, I don't realise I'm doing it til half way through or I get picked up on it then I have to rethink everything I've said and realise that I didn't have to be like that, I haven't really given myself a chance to let it in when I do I will read my leaflets that I've been given to try and understand. My other half has just swapped jobs so he is having to re adjust to that and my health, but he is very understanding of me when he sees me struggling then he'll step in. x x
I have MS
My MS nurse came to my house shortly after diagnosis and sat down with me, my wife and kids and explained to everyone what MS is and how it may affect me. She answered any questions we had. I'm not saying my family completely understand what I am going through or my different emotions on a day by day but at least they are a little more knowledgeable now and perhaps have a better insight into what the future may bring.
Maybe your MS nurse could help you and your family xx
5 days on from my LP I can honestly say it was the worst experience of my life. My lower back looks like it's been used as a pin cushion. 3 lots of anaesthetic and 3 attempts with the lumbar needle whilst hitting a nerve on 3 occasions it felt like I had been electrocuted. I realise that this isn't always the case and it usually goes trouble free but I wasn't so lucky. I now have the headache from hell still and I'm just hoping something good comes out of the results as it's definitely something i wouldn't want to go through again. 
Hey pops,
ah that's good it's good that your family were there with you, my nurse came over a couple weeks after my diagnosis it was only me here to speak to her so had to reiterate everything, I tried to remember everything I wanted to ask and what people wanted to know, she gave me my blood results and I have the JC virus but still going to have the treatment when I have to go to hospital once a month, she also thinks it's a good idea if they can get someone to come out and safe guard the house and get someone to come out and give me some help, but she gave me her number so she can come out again and talk to my family etc which was nice of her as it was a bit of a way for her to come. X x
I have MS
Hi emz
All the best with your treatment. I too am JC positive but went for Tysabri, I think it has helped me. There is a Tysabri Facebook page which may help. I hope it all goes well xx
Hey Kevinhives,
wow you have a LP 5 days ago, oh my days it's sounds quite traumatic and given you side affects ie headache, I'm sorry you went through that, I cant believe it took them 3 attempts and the anaesthetic sounds like it didn't help,, hopefully you'll have some news soon fingers crossed. X x
Hey pops,
Thanks, wow do you feel better with the treatment, and the JC hasn't affected anything? I was going to check the MS on Facebook but it will be public I don't want myself to be out there yet. X x
I have MS
As I say I think the tysabri has helped as I have had only one relapse this year. Being JC positive hasn't caused any problems, my blood tests have come back fine and my recent MRI showed no new lesions. I feel drained for about 36 hours after the infusion but then I'm OK, or as OK as possible. For me I will continue with Tysabri for 2 years then see how my JC is then decide if its to continue.
I have MS
It is said that a little knowledge is a dangerous thing. I don't want to create alarm to what is already an frightening subject but my experienced is worth reporting.
I had two unsuccessful attempts at lumbar puncture puncture. On the first occasion a doctor strolled on the ward and announced to nobody in particular, "This is my first time." I was already very nervous, so by the time he found a bit of my spine that wasn't anaesthetised I was in total meltdown. The nurse, who was holding my hand, told the doctor and the LP was immediately abandoned and the doctor flounced out without a word. His excessive pride and arrogance showed him up in front of a nurse and I don't think he liked that.
I refused to have the second one because the tranquilliser didn't work. I told the neurologist that I wouldn't have another unless I was unconscious. At first he said that wasn't possible but had second thoughts some time later. It was eventually done at St Georges, Tooting. and I don't remember a thing. But I had to have this done as it was needed to fulfil the McDonald criteria.
The next time I saw the neurologist he baldly stated, "You're right. It's MS" and told me to see the MS nurse from now on. My wife, who was praying it was something curable, was distraught. The bastard (sorry; neurologist) left the hospital building before we did.
albrecht durer wrote:

I had two unsuccessful attempts at lumbar puncture puncture. On the first occasion a doctor strolled on the ward and announced to nobody in particular, "This is my first time."

People, tell your children: when it's trainee day at the lumbar puncturists' or the bikini waxers', just walk on by and keep walking.
My LP experience was entirely different. The trained dr was showing the trainee what to do and he tried 3 times to get the fluid and was unsuccessful but then the trainee tried and she got it first go. I wouldn't say it was the best experience in the world but it had to be done and I had no after effects apart from tiredness.
Mags xx
Hi emz. My first symptoms was ON too. I was 19 . The though of MS at that time scared to to death I'm now 27 and little has change for me. I think MS has changed alot Even since when I was diagnoised. It's Become more manageable and there's more treatments. At first I jumped to the worst and after a tiny bit of research Realised it wasn't that people with MS just carry on and enjoy there life's
Hey siyman,
thanks for the msg, yeah it was the first thing that made people think something wasn't right the neuro said he thinks I have had it for a while, but docs put it down to tabs instead, wow 19 is a young age it must have been quite scary for you I know I'm going through a lot of emotions daily. They are putting my on the iv every month, and given me lots of leaflets etc I can't bring myself to look at them yet but I know I can't keep avoiding it either. I haven't been able to work either. I have been told the is a Facebook page as well but I don't want to go public with it yet either, I haven't told anyone just family. X x
There's no reason why you have to go public if you don't feel like it. The neuro said to me just get on with your Life and enjoy it. She was right. And was very positive about MS. She said to me it's the best time in the history of humans to have MS lol. Also it was a scary though at 19 and my mind would run away with me. But 8 years on touch wood I feel fine. I still play football with my friends go out and have fun
Hi Emz,
Sorry about diagnosis Emz. I've had MS for nearly 30 years, sounds a really long time. Diagnosed 1998. I only told immediate family as symptoms weren't visible - numb arms, legs, feet. Only when my walking was effected I had to tell people.
Chickened out and just sent a round robin email to everyone - couldn't face telling lots of people.
Had MRI and LP - sedated for MRI as get panic attacks if I feel trapped. No problems with LP told to lie flat for 12 hours and drink plenty.
My top tip - have a MS notebook and write down dates all your symptoms and how long they last. Any appointments/ medication etc. Comes in very useful if you apply for a blue badge or MS nurse/neurologist asks you questions about your MS.
Trying  to explain MS to people is tricky. I often say I have so many steps per day (as my walking is really bad) and have to use those steps very carefully. Pace yourself.
Take care,
Jen x
Hi Emz

So sorry about your diagnosis - Ive had MS for 4 years now. All of the people that know me well know I have MS. I dont hide it particularly but I dont shout it from the roof tops either - everyone at work knows because I am part of a team & due to where I live I have to travel a fair distance so I work from home most of the time - so its easier to just be honest with them  rather than them asking why can "she work from home at not me " !
But you are braver than me -it has taken me ages to actually post on here i.e only recently. I used to just read all the posts which helped me through all the ups & downs of the MS rollercoaster. cheeky
Hey god rat,
thanks for the msg, wow 1998 how was that for you? I only found out a couple months ago after things went a little crazy quite fast, I have the numbness, tingling, bad eyesight in right eye from ON and quite unsteady, and tremors and slurred speech, I popped out today not very far and People were looking at me coz I was unsteady I swear they thought I was pissed I felt awkward and inadequate, and I was getting angry wanted to shout at them but I sat down had a cuppa and tried to forget it. X x
hey Mrs fox,
thanks for the msg, how did you feel when you first found out? It's good that you have that opportunity to do that to make it easier for you, unfortunately I'm not allowed to work as I also have mental health issues I had a pip assessment today which was quite scary for me, having to say out loud how difficult things are at the moment was horrible hated admitting it all coz I've not admitted to myself which was hard the lady was nice, helped me through it all, I popped for a coffee after wit family and people looked at me funny coz I am unsteady which made me feel horrible. The pip assessor said think about getting a walking stick but I'm not ready for that I said I'd think about it. One step at a time I guess. X x
Hey guys,
after my concerns of people seeing me unsteady and making their own assumptions and telling people gossip after seeing me, also that I'm needing help to walk at the moment and my kids friends are seeing me like that I don't want them having people talk about me like that, is it the right time to tell people before gossip starts and my kids don't get stupid questions? Not sure what to do....X x
You really are having a tough time at min x
Its a personal decision when & who you tell. It maybe easier once you have told one person & has you say better than all sorts of other gossip that may go around.
With regards to walking aids - after I fell over / stumbled a few times I purchased a fold up walking stick  £8 from Amazon its black ( so goes with everything) with flowers on. I dont use it all the time but carry it with me so its there if I need it. I think just knowing its there helps - if that makes sense. 
K x 
It isn't easy but can't imagine it is for anyone Hun, but having the pip assessment yesterday and having to be honest and tell everything that goes on which I haven't even been able to admit out loud to myself and then walking past people staring at me as I walk unsteadily is an anxious and uncomfortable feeling I suffer with anxiety as it is so it made me get angry and wanting the floor to swallow me up at the same time, sounds silly I know. I only noticed it this morning walking up to my parents with my mum which is only 5 mins away and her having to help me walk which doesn't feel right to me then my sons friend just stared at me funny it felt horrible and I'm a private person but I don't want my kids to get taunted or mocked because of me. I have been told about walking aids to help but I get conscious I know it's stupid and a help is better than no help. It's just scary for me. But I know at some point soon I can't hide it much longer. How did it make you feel knowing you would need something to help you at some point?
sorry about the essay. X x
Hey guys,
I can officially say I can't wait for this wkend to be over, first the assessment fri which was a little difficult for me then people staring after, then yesterday the pup decided to jump over a wheelie bin over a gate to get out the garden I was on my own and couldn't bloody to anything I shouted his name took a few steps I couldn't even walk fast, a nice fella saw him and heard to shouting and brought him back, God forbid what could have happened otherwise it scares me coz I don't want that on my conscience and I have no control, we now can't be in the house on our own I'm getting angry and feeling trapped and hate it, I had to msg my daughter she came down and took us up to my  mums to which 3 cars on the way we're slowly driving by and staring and me and my daughter said mummy you need to hold my hand coz people are looking at you walking I got so scared I hated it. So she ended up walking me and the dog and she is only 13, I'm feeling alone and angry but I have no where to put these feelings. So I'll keep them to myself nobody should have to put up with my mood swings and frustrations it's not their fault. X x
Hi Emz
Everyone acts differently I know, but you know what I tell everyone I meet . When I was diagnosed it panicked and stressed me out, and when walking I struggled to walk in a straight line . But as I am sure you know Stress only makes MS worse, so I have told everyone at work, people I socialise with, the absolute lot ! Being stress free helps no end, and I even use MS to my advantage, for example when it is my round in the pub, I dont have to move an inch, even though I am capable of walking .

At the moment your MS isn't going to go away, but you know what I am utterly convinced that they will find a cure in our lifetime !!

Keep the hope and stay strong :-)
Hey Ant,
thanks for the msg, wow do you really, People are noticing that something is wrong but I think they think I'm half cut, I'm a private person I know I can't hide it forever and will have to open up sooner rather than later, I'm not sure what's actually stopping me I don't like being talked about behind my back and probably coz that actually makes it all real, you sound very optimistic and strong. X x
Hi Emz I just found it easier to tell people . People can surprise you as well and really understand what you are going through . And if they don't well they ain't worth knowing . It sounds like you are worrying about it . Well take the worry out of it and tell people then at least it will stop people gossiping about you . It certainly made me feel better to the point that me and my friends have a laugh about it now ! I know MS is hard but why make it harder by worrying about it Keep smiling ☺ Ant x
Hi all,

im new on here today, not diagnosed but had MRI and LP. I have less but LP was clear. My symptoms are wide and varied and I'm rubbing at relaying them but suffice to say, right sided, buzzing, numb, cognitive, fatigue and foot cramps to name a few.
im medically dismissed from the NHS and can truly say, I haven't got a where all this is going. I hate to say it but I just want to know what it is.
Had Amytrip, Gabapentin now got pre gab and codeine.
the hot/sensitive patches still come and go, and I've had cold patches on R of my head. My speech feels slurry sometimes and walking/balance is sketchy.
i refuse to let it hold me down emotionally as I have children and husband but..... There are times! I'm the sort that props others up and don't want to be propped up.
sorry for the ramble, not sure why I vomitted it out.  My Neuro is rubbish and retiring in July, I feel that things surface but never quite go away and this has been over 1.5 years.
Sorry again.

Hi Clare Sorry to hear your issues . I was turned away three times by my GP with my symptoms . It was only in the 4th occasion that he referee me to neurologist and I wad diagnosed . Don't ever give up . Keep on at them until you get answers !! Hope it works out for you . Ant
Thank you Ant.

Reading this forum I can see a lot of people are in the same boat.

There are a lot out there . My MS nurse told me that people are very often mis diagnosed when it comes to MS which is a worry in itself . Its the not knowing that worries you . Weirdly it was almost a relief when they diagnosed me just so I had a name for it and I could deal with it . Hope you get some answers .
this past few days or so have been a little hard, I'm getting angry finding it hard to control it, and walking is getting a little more difficult, I'm having to have someone walk with me when I go out because I'm quite unsteady and people look, I'm getting spasms which are getting quite uncomfortable. I know there is only so long I can keep it to myself. X x
Hi Emz, I've found myself in a similarly unsteady situation this past six weeks,  wobbly unpredictable legs etc, except I've mostly been hiding at home and haven't been brave enough to try walking outside on my own for a couple of weeks.  I'm going to get a stick to use and try going out in the late afternoon first as that seems to be when l am strongest.
I'm sorry that you are having such a rough time and have so much to deal with atm. Is there an MS society/group near you? I rang the one near me the other day when I was very down. The lady was lovely, calmed me down and said for me to get back to her and she will come and see me. I think getting to know people locally who know what it is like will be very helpful, we can go out and be wobbly together :-)
Hey Teal,
thanks for msging back, it's not a nice feeling as I'm sure your aware, I haven't been going out either nobody knows so I don't want the feeling that everyone is staring at me, I popped out yesterday and had to be held out I was gone for half hour and only  walked for 10mins and I felt useless couldn't walk properly at all I didn't expect that to happen and when they tried to help me I freaked out coz it looked like I was being held up not just holding someone's hand so I changed it, um I haven't been in contact with anyone yet unfortunately as I can't get anywhere and wouldn't know where to start, I've been given leaflets about coffee mornings etc but haven't been able to get anywhere yet so not met anyone. Yeah we can x x
The lady I spoke to was happy to come to me. I think I found her number using the 'support' tab on this site. I also rang the main ms society helpline at the top of this page when I first found out and another lovely person talked me through things.
It's going to be hard when I do go out and meet people who I know. I've told a few people by text, but you can't exactly broadcast it to the world to explain. I don't mind if people do know what it is, but I'll just cry if I have to explain it. Maybe I should write a card out that I can just hand over if I need someone to help. I did that when I used to travel on the Tube and I had bad migraines. Never actually used it but it made me feel more confident knowing I had it with me.
About the staring, I'm seriously considering dyeing my hair purple to distract them. 
Hi Emz and Teal Not sure how long you have been diagnosed but when I was firstly diagnosed I had exactly the same problem. I found this was down to worrying about it and trying to consciously trying to walk normally. Now I don't think about it and I walk loads better . Not without the odd wobble but loads better ! You will get there :-)
Hey Ant, I was diagnosed a couple months ago, I've been wobbly for quite a while but my legs feel so weird now so maybe your right but if I don't think about walking I fall down atm, I don't know how long this will go on for so I'll try what you said and see how I get on. X x
Hi Emz It took me a while before I finally got my head around my diagnosis . Cant say I have still got my head around it . But it does get better once your mind accepts it a bit more . You will get there :-) . Ant x
I have MS
Hi Emz, The first thing to go when MS comes knocking is our dignity. You'll have to make a choice between keeping it and the stress that causes or giving it up in exchange for finding out who your real friends are.
Hi Clare,
You don't have to apologise for venting you feelings here. It's in our genes to read your story and try to understand; otherwise we wouldn't have this forum.
You say you are "medically dismissed from the NHS". Have you been told they have closed your file? Go back to your GP in July and tell him/her that you'd like a second opinion with the new neurologist. But you've probably already worked that out yourself.
As for neurologists, mine flatly refused to even contemplate I had MS. In his professional opinion I had a "functional disease" (in which symptoms are caused by psychological or psychiatric illness) and promptly sent me off to talk to a psychiatrist. (see comment #24)
After nearly an hour of relatively sane questions he started to ask me about "voices". When he said "Do you hear voices on the radio talking about you", I snapped, "Not often enough" The shrink told me that I wasn't depressed and the interview was over.
The neurologist eventually had to eat his own words (much to his obvious discomfort) and promptly retired. I've got a much newer model now but will be keeping an eye on her for any signs of excessive hubris. And I've told her!
All the nurses are bowing and scraping out the bedpans while the Ivory Tower brigade are on the golf course concocting a different type of shit. It makes it difficult to get any sense out of them most of the time.
That's me vented.  It's getting the anger & frustration off your chest that helps. Did you know that anger that is unexpressed wil lead to depression? Get angry, not mad.
Anthony (on my third neurologist; they get tired easily)

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