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

[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