Hi everyone. Haven’t been on here for a while. Really needing some advice. Seen by my neurologist over a week ago. Everything went well. No new lesions. The next day, both legs went numb from knees down. Lasted only two days. I have been in bed since then suffering from nausea, headaches, dizziness feeling faint and strange sensations in my head. Feeling so weak and low. I have been on gilenya for a year and als gabapentin. Can’t get GP appointment. Have just been hoping it would go away. Thank you
Hi bibby. I’m sorry to hear you’re feeling so unwell. It’s awful hard when you can’t get a GP appointment. Do you have an MS nurse you can call? Or can you maybe ask the receptionist at your GP surgery if they could fit you in for a more urgent appointment? Explain how you’re really feeling very weak and low. They might be able to see you more quickly. It’s worth a try anyway.
Personally, I find it really hard after I’ve just seen the neuro, because after that I feel like that’s me on my own again with this until the next time. Sure, there is still the GP, but they always just tell me to wait and see the neuro. My diagnosis is PPMS, so there’s no disease-modifying treatments, so when I see the neuro he says just see your GP for help with your symptoms. So round and round I go! I have to remind myself that this is probably actually a good thing, since meantime I am well enough that everybody can tell me to wait and see somebody else! I’m not taking my gabapentin anymore cos I didn’t really think it helped enough to make up for the side effects. It made me tired and low and it didn’t seem to help with pain that much either. I know it doesn’t affect everyone in the same way, but I don’t get enough benefit from it for the way it makes me feel.
So our situations are obviously not identical, and it sounds like you have RRMS as you’re on Gilenya and I don’t know if you are also dealing with side-effects from your meds. But individual circumstances aside, I wonder if you are going through a similar experience of feeling a bit low after your neuro appointment has been and gone for the time-being, especially since you have been really very unlucky with the timing having got ill right after your appointment. I mean for everything to go well and then to have a relapse of your symptoms the very next day is just the pits, timing wise. That’s why I think you should maybe have another go to try to get an appointment with your GP or an MS nurse, because you shouldn’t have to be dealing with it all on your own.
All the best. Hope things get better for you soon.
Hi i feel like this after i have done something like gone out. Kind of like your coming down with a flu or something.
I had a virus and the aftermaths have been really more difficult then the virus. I had my sisters come yesterday i had lovely time we chatted and laughed they were here for several hours.
They hadnt gone long when i had strange sensations throughout my body like my blood was pounding through every vein, i had an odd headache and it scared the life out of me. I have had this before and didnt much like it but never as bad as this. I am already talking to GP as I havent been feeling special after my virus and she wants bloods doing and is trying ot organise the district nurse to come, as they dont have appointments until NEXT WEDNESDAY.
Now was it the stress of their visit it made me feel a bit like you are experiencing without the faint or dizziness. Or she had made some biscuit and after i had eaten some of it she told me it was made with butter and peanut butter and had chocolate in it, well i am not good with dairy and i never eat butter its too rich for me, so was it a reaction to that. I must admit i was frightened.
I went to bed i did wake up drenched. changed and went back to sleep. I feel a bit rough still headachy so not sure what is going on.
I know when i do anything now it triggers a really bad form of MS fatigue.
Maybe yours was he same a reaction to it all. I hope you feel a little better today. Maybe i might get my bloods done today lol. I wanted to see GP but cant see one until next week. Its ridiculous. so she phones. its not the same is it.