Hi everyone! I am new to this forum. My boyfriend got diagnosed with an aggressive form of MS in February. It all started in October. He suddenly got very sick, and had a numb feeling in his left arm and leg, and walked as if he was drunk. After a visit to the hospital the doctors were very quick in saying he probably has MS. The MRI’s showed a very active brain, and lot’s of new spots after 3 months. He started with his treatment ( Tysabri infusions) 2-3 months ago, and had 2 so far. The next one very soon. He is only 27 years old. Why I’m posting here. We dealed with whole situations quite well in the start. Although I am pretty sure he seemed better, than he actually felt, and told me. After the diagnosis it became all more real, and it’s not easy for us at the moment. He wakes up with bad headaches, has mood swings, get’s annoyed very easily and doesn’t even know why. He is also very exhausted all the time, so we can’t really do much on my days off, and if we have a drink for example, he looks drunk after only 1-2 pints of beer. I can see his sad face when he tells me about his worries, or struggles to walk, and it just breaks my heart. He used to be a very relaxed and positiv person, and it was very hard to actually annoy him for example. Now I feel like I have to watch out what I’m saying sometimes. We still trie to stay positive though, but it’s not always easy. Especially over the last 2 weeks I felt like crying every day…and also did most of the time. One of the days we were supposed to meet friends for lunch, but he woke up with a headache and a really bad mood. It is very hard to cheer him up and whatever I do or say, it doesn’t work. We already had two of those days before that day. (I was off, it was nice weather, and we only sat at home and he randomly got very moody. One time we just sat there quietly, because nothing helped…and I hate it) So he didn’t come to lunch in the end, and I was very upset. On the other hand I tried not to be mad, or blame him for the way he feels, and being sick, as it is not his fault. But it is also not easy not to feel upset. His bad moods pull me down, especially when I can’t do anything to cheer him up. I want to go out, and enjoy the nice weather, but only a short walk is already too exhausting for him, and the hotter it is, the worse he feels. I am planning on doing more things without him, so I don’t go crazy just sitting at home, watching tv. But on the other hand I want spend time with him, and be there for him. I could go on and on, but I think that is enough to decribe the situation. So here I am, looking for somebody who maybe has some advice for me, am I the only one who feels like this? And more important is he always going to feel so exhausted, and moody, or is it going to be better in maybe a years time, when the drugs ( hopefully) work, and his body had time to recover a bit. I don’t know if I’m too hopeful that it’s getting better with time, or if it’s better to face the fact, that this is how he is now. But just the thought that it’s not getting better is killing me. Thanks for everyone who takes the time to read all this. Annika
how old is your boyfriend?
i do feel for you as carers have a hard a time as sufferers.
however i feel for him.
the disease itself is here to stay, long term /chronic illnesses have no cure.
however his moods need not be long term.
change in mood has to come from him though.
speaking for myself, one day after 2 moody years i woke up and thought ‘stuff this, i’m going for a pint’ and i did!
it felt weird going in the pub on my own but people came over chatting.
after that if my husband asked me if i wanted to go out i said yes.
so be patient with him, love him, go out with your mates.
Your boyfriend is highly unlikely to get any improvement in his mobility but he can get help with his mood.
Ask him to see his GP about antidepressants. A lot of people with MS take them, including me.
Thanks for your reply. Carol: He is 27 ! I also feel like it’s still very new and not a surprise that it’s not easy and depressing.I just hope with time we can get used to everything, the infusions help, and we can be happy again. I didn’t expect his mobility to improve, but is he always going to be tired and exhausted ? I will tell him about the antidepressents. Maybe that would be a good idea. But he also wants to talk to his doctor about it when he has his next treatment.
hard to say if he is always going to be tired and exhausted, it effects everyone with MS differently. He could be always tired from now on, but sometimes improving your mood can help with that, but not always. people have good and bad days fatigue wise, but not always. sometimes unfortunately, it never goes away. there are people out there he can go talk to about how he is feeling about the diagnoses, might help his moods and might help both of you meds can help but so can talking at the same time the infusions should help, but they are not a cure sadly