Hello, have been diagnosed for a long time now, 2008. I was forced to give up work due to how bad things got symptoms wise and am struggling day to day in which leads to a very low mood and lack of motivation. I don’t really have anyone near me and yes, local groups are available, I’m just struggling with doing that. I did, yet, something happened, which led me to walking away. I think I just need guidance on how to fill my days especially on the days I just want to do nothing. I just feel sad and somewhat lost, so I thought I would reach out. Any advice will be welcomed and I am here to support also.
Thank you for taking the time to read this through and I hope your day is going well.
Hi I'm Ange and I'm 40 years old I've been suffering with chronic pins needles and numbness down my left side for almost a year I've also had very bad bouts of vertigo and balance issues along with a tremor of left arm and lately my left leg has been giving way, I've also had a bout of losing bladder control .... I'm under care of neurologist who has said my MRI showed white matter lessons but our inconclusive and I'm awaiting lumbar puncture and evoked potential test, I'm off work due to the balance problems, please has any one else been going threw this or can you tell me if you think this is MS I'm in limbo at min and have no other help from health care professionals, just a ton of meds from my GP to try mask my symptom,any advice would be greatly appreciated as I feel like a total nag.
I am totally heartbroken, lost and confused by my partner with MS who ended the relationship a week before our anniversary of being together a year. Can anyone explain what may be going on in his head? He was diagnosed with PPMS a couple of years ago a short time before I met him. He is turning 37 very soon, and again, just prior to meeting me, was forced to take early retirement from a job he adored and never stopped talking about while we were together. He told me about the PPMSon our first date, as we just clicked right from the start, and after doing some research on PPMS, and falling hard for him, I assured him that I would never walk away from someone because of ill health, and I would be there through thick and thin.
He was in denial I believe our whole relationship, telling me (and beleiving it himself) that he was a bit of a mystery in that the specialist told him he would never suffer mobility issues or end up wheelchair bound. I feel sure that no healthcare professional would ever guarantee this to someone with MS, but he insisted. Until recently, his symptoms were not affecting him too badly, some memory issues, restless leg syndrome, lack of ability to smell, and twitches. What I noticed from early on, was that he was inconsistant in his treatment of me. One moment I was the love of his life, the next he was a little distant and moody. I was his first g/f in a decade and I noticed some social awkwardness, and self absorption, and started to wonder if he had mild aspergers or something similar. He assured me there was no depression, and could not understand my feelings of his behaviour with me being inconsistant. He was also a bit of a sponge financally, leaving me to pay for nearly all of our shopping when he stayed with me, and any social time out we had was paid for by meon every occassion except where it was clearly out of order for me to do so, such as my birthday, but I figured that even though he had been given a healthy pension from work, he was likely scared about his financial future so I made allowances. Even with his flaws, I adored him as he is the loveliest and most gentle man I ever met.
We had a few rough patches, as he had no idea how to be in a relationship, but with patience and understanding from me, we got over our hurdles and for a few months, we were an idilic couple. He had stopped being weird and distant and appeared absolutely committed and besotted. He became very loving and affectionate and we were happy. Nauseatingly so!! It did not last. He suddenly started withdrawing from me, all the affection was being initiated by me, he was moody and made the odd random nasty comment out of nowhere, which was not at all like him. We went on holiday and it was awful. I felt so alone watching all the other couples being loving and laughing, but I could barely get a converstaion out of him. When I asked him what was wrong, he said that he wasn't "feeling" the holiday, but assured me that there was no problem with us, and that he had been like this on a previous holiday. He asked that I stay patient. Often when I would ask what was wrong over the year we were together, he would say that he could not explain it as he did not know himself.
I should mention that at one point my OCD started to get difficult as I was stressed, and I did start seeking re-assurance for my silly worries, but he assured me that he would never leave me because of it as he loved me and wanted only me.
When we came back from holiday, out of the blue he ended it. He gave the reason as my OCD and said that he was now having mobility issues and blames the stress my OCD put him under. I told him that was unfair as he has a degenerative condition - symptoms would occur anyway at some point. He now says that it is not the OCD, but rather his inability to cope with simple things, and his failing health. He says that he loves me, I'm as perfect as it gets, and I make him happy, but his health will not allow him to be with me. I told him that makes no sense as I am willing to stand by whatever the MS brings, and plenty of folk with MS have relationships that work. He apears to be very confused, and not know himself why he can't get back with me, even though my OCD is under control now. I asked him should I close the door and try to move on, he said no - he may change his mind as he misses me so dearly.
I am so devasted without him. I feel like I lost my future and my best friend. I cannot understand why he would end things like this, when I would be there for him no matter what was in store. He says I am everything he was ever looking for.
Anyone advise me what has happened to him? Thanks.
Hello all hope today finds you well?
I'm looking for help for my partner. I have p.p.m.s and its pretty bad at times. My partner finds this so hard to deal with, and I feel for him. I have days I can't walk and he feels useless. So my question is this.. do any of you have advice or know where he can get advice!? Also I have shown him ms fact sites and they just scare him. Lol he worries a lot and I get that. So I want some advice more on emotional support as opposed to factual based support if that makes sense. I put myself in his shoes and am thankful I suffer and not watch someone I love suffer. It must be hard for them too. Thanks in advance
Luci xx
This is for those of you out there that may live somewhere on the south coast, particularly in the Worthing to Brighton area. I am trying to get a feel for the quality of the support available for us MSer's. The medical support and any other general support.
I may be in a position that could eventually entail a move towards the the south coast and it would be helpful to get any opinions. Unfortunately it is something I have to consider these days.
We are not too badly off here in the Peterborough area as far as that sort of thing goes, so it would be good to know what I might be letting myself in for.
I am sure I will get chance to find out myself, but any useful nuggets would be most welcome
Paul
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