AnonymousSeptember 12, 2011 at 5:31 am
Went to see my Neuro last week and my Rhemu. I was told Tuesday by Neuro, CIDP. He can’t call it 100% he said, but it’s 99% CIDP. He’s calling big hospitals to help w my case. He said he’s unfamiliar with certain drugs for it. He is putting me at a double dose of IvIg this week as well as IV Steroids to hopefully get me walking better.
I saw my Rhemu last Thursday and after 6 or 8 rounds of blood work, he’s said, yup, you have Lupus. He said something else is going on, DUH, CIDP, but said there is no denying I have Lupus. Every test says the same thing.
I went straight home last week with my chin up. Answers at least right? Not sure WHERE the road is going to lead us, but answers is better than none.
Now starts the great “treatment plan” Oh, right, what is that again? LMAO!
At least I finished filling out my SS info for benefits after I got both of these. I know 70% get denied, but it’s a start right?
AnonymousSeptember 12, 2011 at 9:05 pm
Yo Duck – Might I suggest an important part of your treatment include physical and/or occupational therapy. I did not respond well to the traditional PT/OT and my neuro did not even include it until I asked for it. What I got was so minimal as to be useless. I asked the PT to help me establish a baseline from which I/we could work together and adjust as needed – that made sense to me.
I found that just as most doctors don’t have much experience with CIDP the ‘licensed’ PT/OT folks had even less and they weren’t intertested in any variation from ‘the book’… so, like most of us I scrounged around and found something else – that worked – for me.
I do a form of Tai Chi for pople in wheelchairs – it feels good, doesn’t over do it and makes sense to me – the guy with the CIDP.
Something to consider. Best to you.
AnonymousSeptember 13, 2011 at 4:54 pm
I like the Rhea and the emu mix…..you made me laugh. It’s good to laugh.
Love the Yo Duck! HA! My maiden name is Mallard, hence the “duck” My dad is Pop Duck and I was ALWAYS Baby Duck! I guess it stuck, even being married for 7 years and through a name change! My last name now is a DOOZY, so I’ll stick with my “babyduck”!
I am set up to start PT this week. I was looking into Tai Chi TODAY…..so strange you posted that. My husband who works for At&T met a lady yesterday who’s daughter has MS, was in a wheelchair for years and is not walking in little 1″ heels! She said Qigong has changed her life and her daughter went from wheelchair to walking, to walking in little heels!
She gave him a brand new bottle of cream to rub on my legs (ouch, don’t touch my legs they HURT) called Arnica. She gave him info on Qignog and said it sounds a little silly, but look it up, look into it and TRY it and be amazed at what the human CAN do. After looking it all up today, having only slept 6 hours in the past 48 from pain and cramping, it’s base is Tai Chi.
Just interesting to say the least!
Thanks for the reply’s…..AND the laugh!
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