2nd Relapse in 3 months

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2nd Relapse in 3 months

Postby viper498 » Sun May 20, 2007 6:53 pm

I just wanted to run this by all of you. I am currently experiencing my second relapse in 3 months. The last relapse affected only my right leg and rear end (before that I had only had one symptom and that was the one that diagnosed me; Nystagmus of the right eye, June 2005). This new relapse is affecting the fingers and palms of both hands, my chest, abdomen and my back. It is not affecting my arms until my arm pit, and the sensation stops at my waist and also neck. The feeling is semi numbness.

What does all of this mean? Is this bad news? I am once again really scared. The relapse I had 3 months ago went away completely. I am currently on day 7 of this new relapse. Do you think I may be going in to secondary progressive MS at age 27? Jesus Christ, I don't know why this is happening to me..... :(

All i can say is that I am getting this after an ear/sinus infection, again.

Brock
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Postby Lyon » Sun May 20, 2007 7:43 pm

Hi Brock,
I have no idea what it all means but I feel for you and wish you the best.
Bob
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Postby Toyoterry » Sun May 20, 2007 11:58 pm

I don't know if you have tried it or not but you might ask your Dr. about a steroid infusion. If you are having an attack it can bring you out of it.
Hang in there,
Terry
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Postby Dahlia » Mon May 21, 2007 3:09 am

Sorry you are having such a terrible time - hope you recover soon !!
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Postby TwistedHelix » Mon May 21, 2007 5:36 am

Hi Brock,
I'm so sorry you're having a tough time of things at the moment... it's not just the symptoms which are frightening, is it? It's those creeping, wordless fears which rise up in your gut when you worry about what this episode might mean if, indeed, it signifies anything at all.
Sadly, nobody can tell you the answer to that, but at least you know you're among friends here who understand what you're feeling.
The fact that you mentioned infection might be significant, though: many people feel that infections can bring on a relapse, so try not to jump to conclusions just yet.

My experience has been slightly different -- I would always have numbness and tingling in my arms and hands
first, a few days before the early symptoms of an infection began to show. It was usually advanced warning that I was about to "go down with something".
Trying to describe the numbness was often very difficult: I used to say it felt as if I had been laying in an awkward position and my arm had gone to sleep, but it was that weird, detached, floaty feeling you get just before pins and needles starts.
I suppose it's pointless to tell you to try not to worry, Brock, but just remember you've got plenty of support here. Just don't forget to tell us if, (no, not if...WHEN!), your symptoms begin to subside,
Dom
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Postby robbie » Mon May 21, 2007 6:09 am

Hi Brock
ask your Dr. about a steroid infusion.
do this it will help.
Had ms for over 19 years now.
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Postby milica » Mon May 21, 2007 6:38 am

On my last visit to a Dr, who is Physician& a Microbiologist Infectious Diseases (his title) I have mentioned that my last relapse was few days after I had a flu. He gave me a script for Tamiflu 75mg and told me that I should start taking it within 12 hours of the first signs of the flu and it should stop it in its tracks.

I got the script last week and I haven't had a chance to use it yet. I am sure it will help the flu, but I don’t know if it will stop the relapse. I guess if it happens I'll find out. I feel better that at least I will have something on hand if I get sick . If a flu gives me a relapse, than maybe if I stop the flu, I won’t get the relapse.
:lol:
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Postby viper498 » Mon May 21, 2007 7:36 am

Thank you all for your support and advice. I really appreciate it.

I can say that I am definitely having relapses after my infection. Dom, My feeling is the same as yours. It feels like my hand (just on my palm though) fell asleep. It isn't affecting my arms though, that is what is wierd. Then it basically is affecting my torso with the same feeling.

As far as steroids. I had these once before. I guess they did bring me out of my first symptom quickly. Aren't they bad for you though? The other thing is that I hate hospitals. I don't want to be in the hospital for 3 - 4 days. :(

Brock
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Postby Loobie » Mon May 21, 2007 9:16 am

Brock,

The one and only time I had the 3 day steroid infusion, my neuro. set up a home care nurse to come and give the IV's to me at my house. Since you are climbing the walls anyway on those things, that made it much easier. I, too, get the isolated numbness. You feel like it should affect everything on the way to the extremity that is experiencing the numbness, but it doesn't work that way. I have had the numbness on the bottoms of my feet and not the tops and it felt like I was walking on pillows. Easy on the feet, but it made it hard to stay stable. Keep your head up, hopefully the steroids will pull you out of this.

Lew
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Postby dignan » Mon May 21, 2007 9:43 am

Brock,
Sorry to hear about your situation. I was just looking and noticed that you restarted rebif in late February or early March.(?) One thing I've been told by my neuro, but never researched myself, is that although rebif starts working right away, its effects build up for at least the first 3 months, and for a lot of people it apparently takes 6-9 months for it to reach full effectiveness. Considering how piss-poor the CRABs are in the first place, I guess you shouldn't be expecting any miracles, but on the other hand, maybe rebif will start helping you a bit more in the coming months.
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Postby Loriyas » Mon May 21, 2007 10:58 am

Brock
I finished a course of IV steroids in March (5 days) with a home health care nurse. It didn't resolve the symptoms completely so I then did approximately a month of prednisone taper. Although it might seem like you have had 2 episodes, you may be experiencing the same one that didn't completely resolve. You would be wise to start on the IV steroids as soon as possible so you can get this under control. And you don't have to be put in the hospital to do it. You can either have someone come to your house and have it done or go to an infusion center and have it done there. If I ever need to have it done again I'd go to an infusion center, where I can make an appointment. Then it is on my schedule, not someone else's. That's the downside of home health-you are waiting on them to come to you. But whichever way you choose the steroids should help, at least some if not all.

Try not to panic (I know easier said than done!) Give the meds time to do their job. I feel for you because I was just where you are a few weeks ago.

Lori
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Postby viper498 » Mon May 21, 2007 11:24 am

Lew,

Thanks for your comments. I guess the brain is so complex that it really wouldn't make sense where you were being affected, right?

Dignan,

You are right. What you say is true. My Neuro warned me of this as well, although I am very very skeptical of the CRAB's. I am looking to get a script on Minocycline from somebody, somehow. I'd like to at least try it based on the latest report from the pilot study done in canada. Perhaps this could help me some? I sure hope something helps.... Are you on rebif as well?

Brock
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Postby dignan » Mon May 21, 2007 3:36 pm

Are you considering taking mino in combination with rebif? That combination is being tested, and for a change it appears that it's not just because the CRAB makers love to get their hands into everything, but because there are theoretical reasons to believe that the combination might actually make sense. If you're on Rebif, you're probably already having your liver enzymes checked. I'd be even more vigilant about that if you're going to add minocycline to the rebif. Oh, and yes, I have been taking rebif since Feb 2004. No relapses while on it, but who knows if that has anything at all to do with the drug?
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Just my $0.02

Postby Baumer » Mon May 21, 2007 4:14 pm

Hi Brock,

Sorry to hear about your struggles. When I was diagnosed, I was pretty much numb from my chest down. I was put on a prednisone taper that helped, but didn't seem to get things completely calmed down. When the numbness started creeping up my legs again a few weeks later, my neuro put me on a 3 dose prednisolone IV and after that did the prednisone taper again. I had a very good recovery after that. Only the bottom of my right foot remained numb after 2 1/2 years. Steriods aren't healthy if you are on them for an extended period of time (say many months or years), but short term, they can stop an exaserbation cold.

Just warn everyone close to you that you will be on edge for the duration of the steriod treatment. Steriods (for me) caused me to lose my temper very quickly. Luckily, my wife was able to hang in there through that.

By the way, my IV steriods were done as an outpatient procedure. Each infusion was an hour, followed by an hour of hanging out watching TV in the infusion room to make sure I didn't have any reactions. I did this before I went to work in the mornings.

Hope this helps,
Aaron
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Postby Baumer » Mon May 21, 2007 4:18 pm

Oh, and I forgot to mention that my numbness was caused by lesions on my spinal cord. Depending on where those lesions hit may explain why some areas on the same extremity feel different.

Thanks,
Aaron
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