Relapse

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Relapse

Postby Laurennicholson » Mon Feb 22, 2010 5:38 pm

This has been my first relapse since diagnosis. It started with just parts of the left side of my face going numb and it spread for some reason around my head then down the right side of my body. Left side of my face feels like I have been injected with botox and I have the most obnoxious ringing in my ears. I have had this for about a week now, did 5 days of steroid treatments and still no changes. I acan't even drive because I feel so drunk when I am behind the wheel that I am afraid to drive. Has anyone else experienced something similar and if so, how did you get through it. i need some help please.
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Postby LR1234 » Tue Feb 23, 2010 2:36 am

Hi Lauren,
I am so sorry to hear what is happening to you.
Do you do any special diets like the best bet diet?
Do you take supplements?
It might be worth you helping your body heal faster.
I found subllingual B12 to help
Vit D 5000 iu
Niacin
B1
A good multi
Vitamin C
Choline/Inositiol 500g supplement

I hope you feel better soon. Sometimes it can take months to recover from a relapse so all hope is not lost. Just take the best care of yourself as you can x
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Postby Laurennicholson » Tue Feb 23, 2010 2:01 pm

I will give that stuff a shot and see if it helps. I will be seeing my Neuro again next week since this flare has gotten out of hand. Thank you for your words!
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Postby L » Tue Feb 23, 2010 3:34 pm

Poor you, sorry to hear that.

I have had the ringing in the ears twice. The first time followed my spinal tap (ugh, horrendous) which gave me the biggest relapse that I ever had. A very high pitched buzzing. It lasted for about three weeks and then it disappeared. The second time was only last week (a bass metronomic knocking sound), it followed a few days of late nights and bad sleep and it lasted for three days.

Hopefully yours won't take as long as that three weeks. I can't recommend anything for the high pitch, it was unpleasant and impossible to ignore, but the bass was obsured with music.

A year after the high pitched tinnitus I was sitting on a chair in the supermarket, recovering from a shop, getting ready to hobble home. I spent an irritating ten minutes contemplating it before I realised that it was theie alarm system control box right beside my ear that was making the noise. I was so relieved!
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Postby Laurennicholson » Wed Feb 24, 2010 6:32 pm

LOL I see how that can be quite irritating. hehe. Thanks for sharing the funny story.
I am starting to get used to my numb face and I think I may actually be ready to drive again. I guess since this is the first relapse since the diagnosis I freaked out. I guess I wasn't really used to the idea of all of this until now. Do any of you still get scared?
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do we still get scared?

Postby Dovechick » Thu Feb 25, 2010 11:53 pm

Yes, we do get scared, all the time... that is one of the most debilitating aspects of MS, not knowing what is going to happen next. And it is not just the pwMS who gets scared, it's their family too. But hopefully we are going to be able to put a brake on progression in the next few years and that will help us be less scared.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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HAPPY TO BE BACK

Postby Dovechick » Thu Feb 25, 2010 11:54 pm

We missed you THISISMS.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby L » Fri Feb 26, 2010 8:12 am

Laurennicholson wrote:LOL I see how that can be quite irritating. hehe. Thanks for sharing the funny story.
I am starting to get used to my numb face and I think I may actually be ready to drive again. I guess since this is the first relapse since the diagnosis I freaked out. I guess I wasn't really used to the idea of all of this until now. Do any of you still get scared?


I do, yes, especially with new symptoms.

Super high doses of vitamin D3 significant cut the chances of a relapse (10,000 international units+.) This Spring, owing to vitamin D and Rituximab (a monoclonal antibody that I was given off label in Autumn) I hope to miss my seasonal relapse. If I do then it will be the first time in many years. Statistics say that I have a good chance.

I really do urge you to investigate high dose vitamin D3 though.
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Postby valanhb » Fri Feb 26, 2010 9:49 am

Scared? Oh yeah! New symptoms, change in treatment, heck even when old ones come back and don't want to let go. For me especially right now - I've gone through almost all the usual treatments - interferons and Tysabri - and my body won't tolerate any of them. Neuro doesn't know where to go either, just wait for the next round and hope.

I'm very sorry you're going through such a hard time right now. Tinnitus (the ringing) can be very annoying. I don't know if mine if from MS or years of listening to heavy metal music (lots of concerts) and competitive shooting. Not at the same time, of course. :lol: I just know that I've got the ringing and it gets better and worse depending on whatever. You do get used to it after a while. ;)
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Postby scdl » Sun Feb 28, 2010 6:22 pm

I am just now getting over a similar attack that landed me in the hospital for iv steroids. After the feeling you had also of numbness in face and hand and side I too was put on oral steroids for a few days but I ignored the other exasberbations of my legs giving out. I thought I could get through it. But I couldn't. Steroid therapy either orally or via IV doesn't always work. It's hope is to get you back to where you were prior to the attack. The hardest part may be waiting for the unknown, is it going to work. If it doesn't ask yourself " Can I live like this?" and I'll bet you say Yes! Unfortuneately this disease can get really bad...I don't think you're anywhere near as bad as it can be. Chin up and good luck
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timing of symptoms

Postby grammaKK » Sun Feb 28, 2010 7:51 pm

At times, I have symptoms, such as numbness, that come and go for minutes or hours, lasting for days at a time. My MS Clinic says that the symptoms need last continuously for 24 hrs or more to qualify. Does anyone else have this?
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Postby scdl » Sun Feb 28, 2010 8:34 pm

My neurologist said 3 days for symptons that are significantly worse than usual or new symptom lasting 3 days. I think there's bound to be different opinions though.
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Re: timing of symptoms

Postby valanhb » Mon Mar 01, 2010 5:06 pm

grammaKK wrote:At times, I have symptoms, such as numbness, that come and go for minutes or hours, lasting for days at a time. My MS Clinic says that the symptoms need last continuously for 24 hrs or more to qualify. Does anyone else have this?


Yes, I have this too. I always think that when I tell my neuro "occassional x, y, or z" they think I'm making it up or attributing something to MS that isn't. I hate it. That's the part I hate the most. At least we have the hope that some of these strange symptoms will go away though!
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