Re: [MSers]/ for Sharon and and group

[Guest guest]

My own personal experience with this is that if I really need I.V. cortico-steroidtreatment, that I tolerate Prednisone well (Decadron aka Dexamethasone turns me into Tyrannosaurus Rex). The dose via I.V. is usually not tapered, but theoral tablets given afterwards have a steady taper: the higher the dose, the longerthe taper. I was accurately diagnosed early, but in relatively young people the spinal exam (I found it easy to tolerate) may clarify which treatment is best for the individual patient with MS; often times these tests serve not merely to diagnose,but additionally, to guide effective treatment.Good luck, --the more they know about you, the better and more

effectivelythey can treat you and possibly prevent or prolong many symptoms and slowprogression.Love to you all,n, who likes to think that I am progressing in some way forewardTo: MSersLife Sent: Fri, January 21, 2011 11:22:48 AMSubject: Re: Look at me all upright and walking around!

Isn't a person on Solumedrol always supposed to have a taper off???? I'm never had solumedrol but have had oral prednisone several times. I have always tapered on prednisone except for the last time. The last time I had a killer headache each of the three days of the med.I understand your reluctance to have the spinal tap. They have already dxed you with MS. So why do they need the spinal tap?? I think I would probably say no. But that's just me. I am a little contrary with my doctors:)hugs SharonThis email is a

natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To:

MSersLife Sent: Thu, January 20, 2011 9:18:35 PMSubject: Look at me all upright and walking around!

Hey Guys, I started talking last week and the fell of the face of the planet. Wanna know why - those steroids about killed me! I mean holy cow bad bad bad.So they gave me 1 gram of solu medrol each day for 5 days. No taper just bam bam bam. Well on the 6th day when I didn't get any dose all hell broke loose in my body. I was dizzy, clammy, disoriented, heart racing, heart pounding, nystagmus so bad it made my eyeballs hurt and looking back mentally I wasn't there when these "attacks" would happen. So Saturday and Sunday I just laid in bed in and out of consciousness. I didn't have the strength to lift my arms, I couldn't stay awake, I just couldn't do much. I will say that I have never been so "relaxed" in that my arms and legs and body just laid there in a heap - so weak. I am not saying that I couldn't move them just that I was so weak I couldn't. Going to the bathroom

was nearly impossible. I would sit on the toilet and be swimming of this daze of confusion until I could get finished and collapse into bed. I had a regular dr appointment (just a yearly checkup) on Monday so I decided that I would go to that and see if I could get any help. Since my gen fam dr didn't order this she basically just told me to call up to my neuro. I barely remember any of that appointment but I do crying uncontrollably and causing a scene before I left and she assured me that I would feel better in a week or so once the steroids left my body. I called my neuro right when I got back. I got a call back from her the following evening around 7pm and she suggested that perhaps I had some sort of infection - dumb! All she kept saying was "so the steroids aren't working" How the hell would I know when I was so so sick. Basically, any time I had to do anything my body would just go nutty and

I would be dizzy, clammy, shaky, spinny, just whacked. The cat jumped on the bed and startled me and these attacks would start all over. It was horrible. My brother who is an ER dr suggested that I had steroid psychosis - thanks bro - wrong! When I was "good" I was good but when any thing that required me body to snap to, it would crap out again and the world would crumble. He suggested that perhaps I take some Xanax. I am not sure where me not being able to wake up or move suggested to him that I be sedated. Kinda just taught me that drs are drs and don't really listen to you. My other brother who is a nurse anesthetists said that probably my adrenals were sluggish from the streriods and the quick stop of them and sure enough when I looked that up it matched my symptoms exactly. My neuro, fam dr and dr brother all said how that was so unusual that it can't possibly be that and must be

xyz. Basically I think that are all idiots. Just because it isn't typical doesn't mean that wasn't exactly what was happening to me. My nero even at that time said how important it was for me to come back and have a repeat MRI and get a spinal tap done as quickly as possible. Really? Ok so all of this rambling to ask this question....

Why do I need a spinal tap? It is my understanding that they can't 100% diagnose me with MS until I am dead really. So what exactly is a spinal tap going to show or not show them? It is just to rule out meningitis? Basically after this brush with medicine I don't really feel like doing any kind of invasive testing just so they can feel better about whatever it they want to rule out. I don't mind doing the MRI again even though it is a 3 hour drive to do it, but why exactly take some of my spinal fluid? I know what I had a spinal block for my c section I had really intense headaches for like 6-8 weeks and I really don't care to go through that unless it is really that important.

Thankfully, today I was able to work and aside from many moments of a buzzy head I only have one "attack" when my husband and I was watching CSI and an scene shocked me with a dead guy coming back to life. lol Again proving to me this is my adrenal system out of whack. I am still exhausted but pushing through because I own my own business and hadn't been to work in almost 2 weeks. On the positive side, when I feel good my arms and hands are STRONG, and my vision in crisp and clear and colors are vibrant again, so yes there was some benefit but man what a cost at least at this moment. One more thing - not that I EVEN care about it but I have gained 16 pounds since Monday.

<---who is happy to be upright and walking around again