1st Solu-medrol Infusion

[yorkieville]

One down, two to go. Seeing stars, head aches, mouth tastes awful even with Altoids. In general, body is NOT happy. IV port is a booger. Back soon
Hugs,
       Sheila

[yorkieville]

Hi, Chris. Yes, I can just barely hear you. LOL Mostly when I am grouchy, it's all on the inside, and I'm walking around thinking, "Don't mess with me!" LOL My Yorkies pick up on my mood though, and my little one grunts a lot and wants to 'kiss it away'. Oh, I don't do all that well on posting to everyone...I am so far behind...wish I had a laptop so I could sit in my recliner and catch up. Spine won't allow me to sit at the computer desk for long. So, how did your lung function tests go today?
Thinking about you. XXXSheila

[yorkieville]

Th eowrst of the irritabilty has passed...Thank God...I don't think I could live with me another day. Most of the swelling is gone, as well.

Yes, that is scary considering your chiro is good. I received treatment with a tens unit at PT lsst year, helped with the nerve pain, but the benefit does wear off. Unfortunately, when I got a portable unit, I couldn't achieve the same results in pain relief.

Ahhh...so you got a 'night' puppy. Sleeps all day, plays all night.  But, Mom, your feet taste so good to her. :)

Sheila

[crystaly]

my stoopid laptop keeps overheating lol The tens are supposed to be pretty good for nerve pain totally agree about the meds . Trouble is they give you one which gives you side effects and then give you another to combat that arrrggg! lol at the pup its still cute mind you their teeth are like needles arnt they ? Hehe if its stubborn gonna be agood doggy ! Mines 13 now and more like apot bellied piggy than a staff its daft as abrush and snores louder than my fella What do you reckion to getting it cpap lol Still can t sleep so thought Id smoke instead LOl goin for a shower in a bit

[T-lynn]

I'm hoping the tens helps,better yet hoping the neuro will order it,got be better then all the meds I pop.

You wouldn't think this darn pup is cute if it was your feet(lol) The right foot has no feeling so I gotta watch that.

She is cute she looks like a panda bear,but stubborn!!!!!

My big newfie is behind my chair just a snoring also.You need to get some sleep!!!!

T

[crystaly]

Hellloooo thought I,d shout in case you dont hear me ! lol Glad you hubby enjoyed his cake ! You dont sound to grouchy to me or do you reserve that for loved one lol usually the way when we feel rough ! How the heck do you manage to post to everyone Ive got a brain like a goldfish ! Dont blame you not liking steroids Yuk! sound horrible from what t lynns said as well as you . Im ok just cant sleep nothing new ther Having lung function tests today well at 9am its 1.35 am at the moment ! My old staffys snoring her head off at my feet at the moment !xx chris
T lynn I believe the tens machines are quite good but have never used one . Had to laugh about the puppy arghh dead cute even though it does think your feet are toys lol xx chris

[T-lynn]

I get mean right after the initial infusions then after a couple of days it goes away.

My chiro is good,thats what scares me,he's pretty much on target.I have found that muscle stimulation helps the nerve pain,when I see my neuro I'm gonna discuss a tens unit with him.

The pup is good,but likes to try to play with me at night while I'm sleeping.She needs to learn that my feet aren't chew toys.

T

[yorkieville]

Hi, T. Thanks, I did enjoy the time away, but I am so glad to be home.

I was so mean on Monday...that was the day after the last infusion.  Was that due to the tapering down? I don't 'think' the prednizone is making me irritable. (Either that, or I've gotten used to beeing a B@*#$.)

Ok, that's exactly where my nerves burn. Sometimes the burning starts in my legs, other times in my spine.

Oh boy, I do hope your chiro is wrong. I went to a chiro this summer. He told me I didn't need a Neuro. I canceled my appt. with the Neuro. Needless to say, he was wrong.

Glad your fat puppy is coming out of her shell. Gosh, everyone I know is getting a puppy, giving me puppy fever. Love puppy breath. :)

Sheila

[T-lynn]

Glad to hear from you.its good that you enjoyed the time away .

Yes,the roids can make a person meaner than a junk yard dog.That will pass.Its a big jump from 500mgs to a taper down.

With the radiculapathy,it effects my paraspinal muscles,the nerves act up and effect the paraspinal muscles and I'm sure that doesn't help my legs either.

Some days I don't know whats what,I do know that when its a symptom above the radiculopathy that its the MS.I really think they feed off each other.

My chiro said that my lumbar fusion is failing after 9 years,I think he's a quack.But will follow up with my neurosurgeon on that one.

My fat puppy is finally coming out of her shell a bit.She's really a scardy cat.I definately can keep up with her.I wish she was a little more active.She's a little lover though.

T

[yorkieville]

Hi, Zilla.

    Nice to 'see' you, too. Happy Birthday to your son!!!!!

    Oh, no, I am so sorry to hear that Quixs' folks had a car accident. I had better go check out her post.

   Hugs,
           Sheila

[yorkieville]

Hi, Zilla. Oops! Sorry, didn't mean to make you almost swallow your tongue with my news of a dx! :) I think I was just kind of floored by it.

Hey, it was nice of you to think you wanted to call me. That really touches my heart. I'll admit, after sitting and talking with my home care nurse, Friday afternoon, I realized it was time that I accepted my life, and stop resisting it. Not give up, but accept that there is no 'magic bullet'.

I do thank you for the prayer.  I keep asking HIM, 'Carry me now". Favorite poem is 'Footprints'. I live by those words.

The CIPD doesn't seem too scary, but the Cauda Equina has me concerned.  

We're so blessed to have Quix's expertese here. Actually, I feel so blessed to have found all of you.

Dr. K really is wonderful!

The 1st two nights after the infusion, I could not sleep, at all, to the point that I was hot & sick in the ealry morning hours. The 3rd night, I finally broke down and took Lunesta. My home care nusre insisted it is important that I sleep.

And DH...stands for "Dear Husband", (although one of my friends insists it means D@#% Husband. LOL) I learned all I know about this stuff from my nephew, I am a computer illiterate.)

Quix has ice cream?!!!! Does she share?! :) Oh, and I would love a glass of your Merlot! :)

How are you feeling?

Sheila

[yorkieville]

Hi, Chris.  Yes, I'd like a dx of 'big, tall & beautiful' please! LOL Oh well, it could always be worse, yes? DH enjoyed his German Chocolate Cake, so I guess all was not lost. The girls loved the trip. Even with their cranky mom. I do not like steroids.
How are you feeling?
XXX Sheila

[Momzilla]

Hey, Sheila!

Glad to see your post.  I'm off to celebrate another son's birthday, but thought I'd let you know Q is taking a little break to help her folks get back on their feet after an awful car accident.  Look for her post about it.  

Must run!  Feel well!  More later!

Z*

[yorkieville]

Hi, T. Just got home. Like I said in my post to Quix, the weather was not great. But it was nice to be away with my DH and my Yorkies. Gosh, my little Kia loves to walk! 4#s of pure energy! :)

What symptoms does your radiculopathy cause? I am just a bundle of symptoms, don't know which is which.

How's that new puppy?

Sheila

[yorkieville]

Hi, Quix.  Just got home from our trip. 3 days of rain, wind, clouds, and cold. Great fun. (Still, it was good to be away, it gave me time to sit quietly, and absorb my dx, and try to come to terms with what it might mean) I'm glad to hear CIPD is typically a better dx than MS. This is the 4th day after my 3rd solumedrol infusion, and my 4th day on oral prednizone. Can we say crabby?  Quix, my family would tell you that I am the sweetest person you could ever meet, but these drugs make me want to BITE someone!

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

[Momzilla]

Hi, Sheila~

Just wondering, too, how things are going.  Hang in there, and let us know what's happening when you can.

Take care,

Zilla*

[crystaly]

Yep I second that hows it going ? let us know when you feel well enough Huggs!!! chris

[Quixotic1]

Hi, How are you feeling?  Is anything settling down yet?  Have you gotten any sleep?   Thinking about you...Quix

[Momzilla]

Hey, Sheila...

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*

[crystaly]

So sorry shelia sorry I dint kno what cipd was .if I could give you another dx I would Huggs!!  Hope yo have a good few days with the girls and your fella as well lol cant leave him out ! Catch you when you do feel well enough . You probably need time out at the moment anyway xxx chris

[Quixotic1]

Finally, I'm sorry it had to be you, but I've been trying to suggest CIDP to people since the very beginning.  It's not great, but it is better than other things, like MS, that you could have had.  It typically IS a better diagnosis than MS because the majority of cases respond well to treatments.  It can have the same relapsing remitting pattern as MS and shares many of the same symptoms.  I have a whole bunch of info on it.  The therapies that are most likely to be effective are the steroid pulses that you are already on, Intravenous GammaGlobulin (IVIG), and something called Plasmapheresis, where they take out blood and cleanse it of the offending antibodies and proteins, and replace it.  So they have several treating options that can really treat it.  

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

[T-lynn]

Sorry to hear about your DX.

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

[yorkieville]

Hi, Chris. 3rd infusion done. No pain relief yet. disappointed. Back is killing me. I baked DH a German Chocolate Cake today for his BD on Tuesday. We are going away for a few days, to attempt to de-stress. Just to the State Park 10 minutes away. A few quiet days in the travel trailer with the Yorkies. Saw 'stars' again today. Not fun. Wish it had scared the c@#$ out of me, least that would have been some relief. LOL No, CIPD is not a good dx. I'd like something else please. LOL I'll be back on Thursday, unless DH tosses my little moony tush in the lake. Hugs & Love right back at ya. XXX Sheila

[crystaly]

Hi she lia nice to hear from you . Sounds like your treatments well under way noe HUGGG!!!!! Not surprised your washed out and can't think straight lol funny enough had that conversation with someone this morning memory of agoldfish myself that is ! God didnt relaise it did that to your vision either god bet that scared the *** out of you !! Well not sure if the cipd s a good news prognosis or not as dont know anything about it !! By the way I couldnt,t say that once let alone 3 xs fast ! Will try and catch up with you along the line somewhere lots of love though will keep checking to see how your doing ! speak to you soon
xx chris

[yorkieville]

Hi, Chris, T, and 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