Member Comments are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum. ALWAYS check with your personal physician before taking any action regarding your health! MedHelp International and our partners, sponsors and affiliates have no obligation to monitor any comments posted on this site, or the content and/or accuracy of such exchanges. MedHelp International does not endorse the views of any user.
Multiple Sclerosis Community
Our Patient-to-Patient MS Forum is where you can communicate with other people who share your interest in Multiple Sclerosis. This forum is not monitored by medical professionals.
My first infusions was done 4 times a day at 250 mgs,the second set of infusions was twice a day at 500mgs and the last one done a week and a half ago was 1500 mgs at once for 3 days.
I don't like the ports,the last one was done very nicely and it didn't bother me.
The taste is nasty,drink lots of water.
Get some rest.
T
Next time see if you can find a different road!
Feel well. And if you don't feel well, have someone kiss your moony a**! = )
Hugs!
Zilla*
Ok 2nd infusion down, waiting for my nurse to arrive this morning and do the 3rd. They are giving me 500 mgs., once a day.
Haven't slept a wink the past two nights, so I have no idea what I am saying or doing. What else is new?. :(
Lost most of my vision for an hour after the 1st infusion. Nurse called Neuro yesterday morning, and he ok'd 2nd one. Vision is still spotty.
Oh, I have a diagnosis. Recieved Dr. K's report; Cauda Equina Syndrome resulting from CIPD (chronic inflammatory demyelinating polyradiculoneuropathy) try saying that 3 times fast. LOL
Hope you guys are doing ok. I'll be back soon.
Hugs,
Sheila
xx chris
I hope you get some releif with the steroids,sometimes it takes a few days for them to kick in.
I have radiculopathy I can some what understand.
Enjoy your few days away.
T
The steroids may take several days to show their effect. Typically, you don't feel better before the 3rd day, at least 72 hours after the first dose. Hold out hope! The inability to sleep is a nasty side effect of the steroids. You also may feel anxious, hyper and irritable. My neuro gave me Xanax to help when I get the steroid pulses.
CIDP is the demyelinating process of the "peripheral nervous sytem: the external counterpart to the central nervous system process of Multiple Sclerosis. Many experts in the field feel that it is highly underdiagnosed.
Would you bump up your whole story so we can analyze how you might have been different from MS in symptoms? Like typically the spinal tap shows elevated protein and O-bands, the NCV's are usually quite diagnostic and the person often has weak or absent reflexes.
There is a good chance you will improve with one of the therapies. CIDP can become chronic and lifelong, but more often it "burns out" and then goes away. It is not the awfullest thing you could have. Do you want more info?
The Cauda Equina Syndrome though, may be another matter. Has Dr. K said whether that can be repaired or released surgically? The inflammation of the CIDP caused the nerves that flow down through the lumbar section of the spinal canal to form adhesions and stick. When they can't move freely they may stick and be stretched/damaged causing the symptoms.
Quix
What do you mean, "Oh, I have a diagnosis..."
I about swallowed my tongue at work today! Wow! I nearly had to close my door. I wish I had been able to and sit down at my desk and say a prayer quietly and pick up a phone and call and speak with you. I really wish I could have. I did say a quick Please be with them, God, and let it go until just now.
I'm sorry you are going through so much. But, YEA! A diagnosis! I do know a little too much about CIDP because for a while I thought I might be a candidate, so I researched it. It's not so terribly bad, truly. Quix helped me look into it. She's quite the expert. And there are good therapies for it. Lots of promising therapies. With pretty good results, and it does seem to dissipate after a while, whereas MS is like the energizer bunny.
Your Dr. K. sounds wonderful. I'm glad you have her to help you through! And your DH (I really wish someone would tell me what it stands for -- I'm serious!! I'm oblivious! My kids will tell you!) is a trooper. You have the little ones to look forward to. What bliss. But for now, let everyone take good care of you.
Relax, try to let the medicine do its thing. Don't get worried about not sleeping. I know that sounds crazy. But if you get caught up in that stress of 'oh, no, I'm not sleeping' you'll just get more stressed, and if you're stressed, you'll not be able to sleep. Try to be as comfortable as you can. If you get tired enough, you'll get some sleep eventually. Don't worry about it, it will just make you cranky and you only have one moony a** to kiss. There won't be enough to go around, know what I mean?
Keep up your spirits. We're here for you. Been thinking about you all day. Have some of Quix's ice cream. I'll save some Merlot for you! ; )
Zilla*
Just wondering, too, how things are going. Hang in there, and let us know what's happening when you can.
Take care,
Zilla*
I'll be glad to post a thread an bump up my story. It would be so great if my story might help someone else.
No pain relief yet. No improvement in bowel function.
When I walk a bit, my legs are on FIRE!
Dr. K didn't mention surgery yet in regards to the Cauda Equina Syndrome. (Know something curious about that dx? I had read about it a few years ago, and thought, "Hmmm, those symptoms sound like mine.")
I am supposed to call her in a few more weeks.
Quix, do those adhesions interfere with bowel function? I have this feeling of 'bands' across my pelvic area, wrapped around my thighs, etc.)
Quix, thanks for answering my post, I rewally appreciate your help.
Sheila