Hey everyone, I haven’t posted here for a while but I really need to reach out to someone that can relate or help me because I’m struggling. I just finished a course of steroids for a relapse. I had heaviness / numbness down my whole left side and tingling pins and needles sensations all over my body. Since finishing the steroids a week ago I’m getting worse. Today has scared the hell out of me. I’m stumbling all over the place, any noise is sending a tremor through my body which, and this is the only way I can describe it, stops my brain for a few seconds I’m stammering. I can’t string a sentence together. I couldn’t even change the batteries in my sons train earlier, I just sat staring at it not able to work out what to do. Someone please tell me this will get better. Currently in my bedroom having a breakdown because I feel like no one u derstands and I can’t explain it properly to anyone
I have had very similar things happen and its like your brain shuts down and you can hardly function, infact i am going through the same this last few weeks after starting in a severe relapse 3 week ago.It will go off though.Its very scary when it first happens and you feel as though you are going insane.Try your best to stay calm as the more upset you get the worse it will be.I find doing relaxation helps me cope with mine.I have a few things on you tube i go to that help me relax theres some good ones on there.I really feel for you as its so hard to cope with when it happens.Mine comes and goes when it wants.I can be in the middle of doing something and then it strikes leaving me unable to function for a while.I used to think it was a seizure but when i told the neuro he said it wasnt.It will go off though.I was once in the shower and i couldn’t work out how to wash my hair,then i couldn’t work out how to brush my teeth either, god i was scared to death at the time.That was quite a few yr ago too and thats not happened since thank goodness.
Thank you so much for your reply. It is so reassuring knowing someone else has experienced this and it does pass. A seizure is exactly how I would describe it! I just feel so sensitive even someone speaking sends a painful tremor through my body and turns my brain off for a few seconds. I really hope it doesn’t last long, for either of us. How long does your relapse usually take to come out of?
Hi Char, good to see you albeit through you having such a rotten time.
If this were me I wouldnt let it go without speaking to a doctor.
With me having PPMS, I dont know how a relapse feels as I`m more constant in my symptoms.
Try to get a telephone appointment with your GP tomorrow.
Hope things improve chick.
Boudsx
When i first got diagnosed my relapses took about 8 weeks to get over.They reached a peak about 4 week then gradually got better.Now i am 28 yr into MS they do take longer to get over.A lot stop having relapses the older they get and i was hoping i was going to stop having them but no mine continue.The neuro said i am still RR even after all this time.Do tell the neuro you are having these symptoms they need to know,but when i told mine they just looked at me as if i were silly and said well thats not typical of MS. seem to have very unusual symptoms with my MS because i have never had much help with them over the years.
Hey Bouds, Thank you for your reply. Believe it or not I had spoke to 3 GPS and my neurologist by the end of last week. The best I got was a prescription of tramadol and a blood test form to check me for infections. Yesterday was a better day. Today was bad again. I spoke to my MS nurse today who has ordered me an urgent MRI. Just another kick in the teeth as today was the day I was meant to make the final decision and proceed with my treatment. Now I have to wait until I’ve had the MRI and maybe my chosen treatment (rebif) won’t be appropriate so it’s back to square one. Sorry to hear you’re constantly having symptoms. Do you have anything that helps relieve them for you? Nice to hear from you xx
My goodness! I spoke to my neuro at the end of last week who used exactly the same words ‘not typical of MS so probably isn’t’ ordered me blood tests. I have spoken to my MS nurse today who has ordered me an urgent MRI so fingers crossed someone is finally listening. I’m wondering if this has been going on longer for me than I realise. I had a migraine that lasted 3 weeks back in October and haven’t felt right since! I’m hoping if it has been going on that long we’re coming to the end of this although it doesn’t feel like it’s stopping any time soon.
Your neuro sounds like one that i see and i don’t rate him at all.I used to have a brilliant one that retired but since i saw this other one, whos supposed to be an MS specialist,every symptom i mention he says its not MS.When i first started with the MS i l lost the ability to speak at times but that wasnt’ the MS either according to them.Over the 28 yrs i have lost my speech in some relapses,not asll of them, but still according to them its not the MS!!!I would like to know what the heck it is then,seen as it only happens in relapse! Needless to say i have no faith at all.Hope you feel better soon.
My goodness! I spoke to my neuro at the end of last week who used exactly the same words ‘not typical of MS so probably isn’t’ ordered me blood tests. I have spoken to my MS nurse today who has ordered me an urgent MRI so fingers crossed someone is finally listening. I’m wondering if this has been going on longer for me than I realise. I had a migraine that lasted 3 weeks back in October and haven’t felt right since! I’m hoping if it has been going on that long we’re coming to the end of this although it doesn’t feel like it’s stopping any time soon.
Hi again, I take amitriptyline for nerve pain which is good. and betmiga for my urgent bladder…still have te SPC.
The rest of being a full time wheelchair user stuff sucks, but it is what it is!
Boudsxx
I have nothing to add except to wish you well. I am sorry that you are having such a horrid time.
Alison