New with questions

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New with questions

Postby jon_z » Sun Feb 17, 2008 4:06 am

Hi all,

I've been reading this site for a while and have found alot of really good info here. I decided to finally post because I had a couple of questions and was wondering if anyone has had a situation similar to mine.

I was diagnosed back in 1996 at age 22 after a pretty bad initial attack. After I recovered from it, I regained all of my function/mobility except for a few remaining pains, muscle tightness, cramps that came and went.

Things continued like this until this past October, when i had a major attack. It started with a back pain that just kept getting worse. for the first week, i thought it was maybe sciatica or general back pain. but as the pain spread into my upper back, legs, arms and stomach, i knew it was definitely the ms. doc prescribed me 4 x 1000mg methylprednisolone. started to feel better for about a couple weeks, then symptoms started coming back just as strong. 4 x 1g methyl again. this time, started to feel better very gradually and for the next couple months, through nov and dec, i felt pretty weak and tired all the time, recovering seemingly very gradually. symptoms were still coming and going, sometime pretty strong (numbness/soreness radiating from lower back into legs, stomach).

started rebif in December with the titration pack and by January was feeling alot better and stronger. I started lifting some weights, slow, nothing too over the top, when my back seemed to be getting sore. stopped the working out, but the back pain was just steady. so for the first week,i took aspirin and laid off the weights thinking i just pulled a muscle or something. at this same time, i was off of my rebif for a week (a long story). I was one month into the 44microgram when i missed this week of shots. so, after a week, my back still hurt but the pain and numbness was spreading to my legs, stomach etc. called doc last week, got appointment for this upcoming week. he put me on methylprednisolone dose-pak (4mg x6 first day, x5 second day, etc) until the appointment.

so i'm kinda feeling like im falling off a cliff here.. i don't know what of this is normal and what is not.. things being so quiet for so long then all this, even though im now on the meds. i'm pressing like hell from my neuro, but i cant seem to get anything of substance, eg prognosis or guess of any kind. mri's don't look terrible; not too good, not too bad.. a few big lesions and a new cervical cord one (which doc said is causing some of the new problems).

has anyone here had a similar experience to mine? going such a long time with no attacks, then all of a sudden one after another? how did it resolve?


does going off rebif if you've been on it precipitate attacks or make ms worse if you do come off sometime later? has anyone been on rebif or another of the crab drugs and stopped? what was the the effect?

thank you for reading this terribly long post. needless to say, I'm pretty freaked out lately about how things seem to be going, without a real idea about what the hell is happening. Not getting much from my doc and not knowing anyone else with ms, i hope to connect with folks here. thanks again Jon
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Re: New with questions

Postby CureOrBust » Sun Feb 17, 2008 5:11 am

jon_z wrote:does going off rebif if you've been on it precipitate attacks or make ms worse if you do come off sometime later? has anyone been on rebif or another of the crab drugs and stopped? what was the the effect?
I was doing badly on rebif. I was takin statins with it (now its known not to mix). I started getting better very quickly since stopping. Some people do better on rebif, some worse.
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Re: New with questions

Postby itsjustme » Tue Feb 19, 2008 7:37 am

jon_z wrote:so i'm kinda feeling like im falling off a cliff here.. i don't know what of this is normal and what is not.. things being so quiet for so long then all this, even though im now on the meds. i'm pressing like hell from my neuro, but i cant seem to get anything of substance, eg prognosis or guess of any kind.
has anyone here had a similar experience to mine? going such a long time with no attacks, then all of a sudden one after another? how did it resolve?



Hi Jon,

Here's my opinion on the subject. First off, everyone's MS is different. However, you can look at the charts graphing the four types of MS. These plot disability over time. All four types show increasing disability. It is a progressive disease.

I felt/feel the same way you do. I was OK for eight years having been diagnosed at age 25. Then bam! I had a huge attack. It felt like the rug had been pulled out from under me. I kept asking myself why no one told me this would happen. Now, I think I know why.

I think it's because the health care professionals I have dealt with have been wishy-washy. They have had too much cowardice to not reveal the hideous nature of this disease. It makes me think of how sister-in-law's brother hung himself. The initial voice mail we got was the euphemism "he had an accident".

But then again everyone's MS is different. You don't want to needlessly scare your patients. That would be irresponsible. But I do feel like could have been given a little more caution.
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Postby cheerleader » Tue Feb 19, 2008 7:57 am

Dear Jon-
I'm so sorry to hear about your struggle. MS is progressive, and docs can't really predict how it will go. MRIs don't give them the whole picture. That said, the new lesion on your cervical spine is probably not helping you right now. That's the one that troubles my husband the most.

Some people find cervical chiropractic treatment helpful, to release extra pressure on the nerves of the upper neck. That's a tight space for the nerves to travel thru, and any amount of constriction by the discs in the area doesn't help.

Hope the steroids are easing the attack, and that you're getting some more answers from your doc. Also hope you have family and friends to stand by you right now...I know it's a scary time.
blessings,
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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