Back in the hands of the RIGHT Dr !
AnonymousDecember 10, 2008 at 8:13 am
I finally had my appt yesterday with ….I”ve been calling him Dr Aggressive.
He was the dr that diagnosed me and I went for a second opinion only to mess myself up.
He was not upset that I went for the second opinion…he said he welcomes it but that I should have gone to a different kind of neuro. Something about neuro muscular or something. He even gave me a name.
I just picked a neuro through our med center and thought I was doing the right thing. Wrong. This is why the lady was only giving me 20 g of IVIG…she did eventually JUST get me to 60g…but, I take it as she just didnt really know. Nothing against her at all…she just wasnt the right dr for me.
Anyway. After the EMG on my arm…the side that I’ve had the severe burning hand, he told me my CIDP is definitely active. This EMG is worse than the last, how much , I didnt ask. I dont think I really needed to.
He told me we will do the IVIG and he’s ok with the home health. He doesnt do home health until a person has had alot of IVIG b/c he feels it initially should be done in a hosp setting. I agree.
B/c I have been getting IVIG, he isnt doing the loading dose…tho, that IS him normal protocol. He said the side effects out weigh the benefits right now and it wouldnt help any more to get it vs the PROPER dose, once per mo.
He told me I need to use a cane all of the time…which, as most of you know, I dont use it at work or around the house. I dont want all the talk at work. I’ve been here 19 yrs almost and only a few know I have something wrong…NONE of them understand it or probably even care enough to. Once they see me with a cane, the rumors will fly. I know…and I will use the cane when I feel it’s necessary. That’s my hard head.
I do use it when I’m out.
He told me the e-stim didnt work and wont work b/c of my muscle loss…atrophy he called it. He said we’ve known for a long time that it’s there…he also said my legs and feet will not get better. He said we must prevent things from getting worse now…
I asked about my hands and if they are going to end up like my feet. Will I someday not be able to use them. He told me that there is no way to know right now, that we can hope and we will try once again “to keep things from getting worse”. I am in an active phase..he called it “smoldering”.
He’s a great dr. I put all of my faith in to him and I shouldnt have strayed. My mom loved him…she met him twice and then a few more times when she was sick herself. I know better than to go against what my mom ever said.
It was a rough time…I was a hamster spinning on a wheel…but, time to move forward and get off that wheel.
The best news of all is that a lady I met at our NE table the night of the state dinner in Chicago at the symposium had asked me about dr’s and I referred her to this one. He told me she came to see him and told him I sent her. I do hope if she reads this, she will somehow get in touch with me to let me know if she liked him. I’m willing to bet that she did.
As for my hands and the burning, he told me to try warm/cold water and shake it out, rub it, etc. There’s really nothing else I can do. I dont fair well with lyrica and gabapentin. He did a blood draw and pending those results, we’ll try something else.
By the way…my next dose of IVIG is going to be 5 bottles. 100g 😀
Thanks for putting up with me everyone.
AnonymousDecember 10, 2008 at 8:26 am
THANK GOODNESS! Well it sounds like you are at the right place now Stacey! And wow they sure are loading you up on the IVIg too! I hope it does something to slow down the attack – I was hoping the burning wasn’t a fresh attack for you but sadly it seems that it was.
Now I’m going to give you a bit of a lecture here because I care about you and you are getting yourself too worked up about this cane thing. What do you care what the people at the office say about you – do you love them? Do they make you feel better? Do they care about you at all? Do you gossip about people at the office who wear glasses to see? Who wear a wrist brace for carpal tunnel? You’ve just got to decide what is more important to you Stacey – office gossip or tripping and breaking your neck. If you act like this is a big deal to you then they will act like it’s a big deal – just acknowledge it and move on and pay no more attention to it than if you changed your hair color. And if they act like it’s a big deal just stare at them with that “huh, what’s YOUR problem” look on your face and get back to work. Don’t feed your fear – just do it and deal with how it makes you feel once you are in the office using your cane. Honestly I think it will be much more embarrasing and the source of gossip if you trip over your own feet and land face first on the floor. They’ll likely think you are drunk, not sick. 😀
OK, enough. Congratulations on getting back on the right path Stacey. I hope you will do something nice for yourself today to celebrate your success.
AnonymousDecember 10, 2008 at 9:03 am
I’m glad you’ve taken this step. You are on the right path now & hopefully very soon you’ll get the CIDP under control. It sounds like you’ve found your way back to a great dr.
And by the way, I agree 100% with what Julie said about the cane. Just think about it.
December 10, 2008 at 9:46 am
Great news Stacey!!
Contrary to the docs comment that things will never get better in the legs, I say give it a chance. Once you start getting more ivig, the inflamation will go down on the myelin, the nerves will be able to get the message from the brain and the muscles will start working better. Did he say with certainess that there was axonal damage from the latest ncv/emg he performed? If he did, then yes, those areas will not get better, but if he did not say that, only time and ivig will tell. FYI, Kevin weighs 127 and is getting 80g a month, he was for 8 months straight getting 105g. This long time period and load of ivig is what I think afforded him the opportunity to regain stregnth and reflexes. He was not just stablizing, but repairing. I have this feeling that 100g may not be enough initially. You might have to revisit the arguement that you have to get it under control before you can just keep it stable. At least for a couple months, then move to 100. Unless he is doing 100g every 2 weeks? Let’s say you weigh 200# a loading dose would be 182g, so if you were getting it every 2 weeks, 100g would be perfect. If it is only 100g a month, you may not see the whammee results you may be expecting. !00 is a start, maybe you could work him up to a proper dose in the coming months. Lets just be happy it is WAY better than it was!!! I get it about the cane, it would be hard for me too!! For some reason, I worry about what others think about me, I too have to get over that!! Well, at least now you will have some super enrgy for Christmas! Glad you are back where you need to be.
DAwn Kevies mom
AnonymousDecember 10, 2008 at 11:21 am
I do understand about the ‘hamster wheel’ and all that entails. Good decisions or bad… I go/went for two out of three opinions one way or the other before [B]I[B][/B][/B] Decide. For the CIDP and other issues as well.
As for IVIG? What you had been getting [dose wise] sure sounded, well, miserly to me. And not what you needed for what all you have. It sounds as if your current neuro’s approach to things is reasonably cautious yet, agressively pragmatic for your situation. What more can you ask for? Really?
I like the description of ‘smoldering’…. I’m in a similar situation now and being bounced around to specialists who’ve NO CLUE about all that CIDP CAN affect. As they often say? Other things are ‘brewing’. Sigh.
Sometimes you have to go around the block a couple of times to find the right parking place? That’s how I feel about some docs at times. Just learn from it all and now benefit from the experiences. Plus, Hoping you feel SUPER soon on a really decent dose of IVIG!
AnonymousDecember 10, 2008 at 6:04 pm
We are all glad that the neurologist is going to be aggressive and plans to get this “back under control”. I am glad you are back with someone you are comfortable with.
Regarding the cane, I agree with Julie and others–it is more important to live life and be safe than what you look like. I decided if a cane helps me to make it through the day and do much of what I want to do–it is definitely worth it. As was stated, just don’t make a big deal about it and others will not either. When people asked me about my cane, I tend to say something vague and not always relevant and laugh. Like I will say, “yeah, it is tough getting older” or “I am trying out new fashion assessories. What do you think?”. You can also say “I played too much football when I was young” it is not relevant, who knows if it is true because it depends on the definition of too much….To me, it was too much although I probably played only a few times. Or if someone asks about my leg, I say “it is getting better, thank you” and just do not fill in that there was nothing specifically wrong with the leg any way–because nerves are in the leg…..
WithHope for a cure of these diseases
AnonymousDecember 11, 2008 at 8:34 am
Thanks everyone for your encouragement. I know, I need the cane and need to throw the vanity out. I realize that I am blessed that I only need a cane and that it could be worse. I have decided to do what the dr orders.
A few mos ago, I saw a cool purple cane at a local drug store. It had a price tag on it that I frowned at …but…what the heck. I’m currently using a silver one that belonged to my mom when she got so sick. She didnt use it long b/c she went down so quickly but it was hers. I guess it makes me feel closer to her.
I know this is off subject but I got the most beautiful ornament from a friend of mine at work yesterday. It’s a Merry Christmas from Heaven ornament. It has a poem on it and a longer version of the poem on a book mark about
“I’m spending Christmas with Jesus this year”. It’s so beautiful and I just cried and cried. It’s been tough getting into this holiday. I think that’s why I am pushing myself beyond limits b/c the busier I am, the less it hurts. In my heart, that is.
I had a terrible burning episode again last night. I sure hope the blood results come back soon and I get a medicine that will help. I truly cant stand it. It’s worse than excruciating.
So, as for the cane. Monday. Monday, I will bring my new cane to work and use an idea like With Hope recommends. Maybe I can tell them it’s from all the runways I used to walk catching up with me. HA. Now that would be funny !
I’ll think of something. Or maybe just nothing at all. Who cares what anyone thinks or says. They dont live in my body. They dont know my fears.
Thanks for all of your uplifting encouragment.
One more thing to be thankful for this Holiday season…my forum family.
December 11, 2008 at 9:23 am
I like the purple cane and run way idea! Heck, get some red duct tape(they have it!) and white medical tape and stripe the old silver cane like a candy cane, it could be your official Christmas candy cane!! The purple one would be great for Mardi Gras. Glad to hear you sounding up beat and accepting, I think things are going to start falling into place.
Dawn Kevies mom
AnonymousDecember 12, 2008 at 11:36 am
I am constantly surprised at how handy my cane can be. It’s a good ‘reacher’ for many things…such as boxes or cans in that top shelf of the kitchen cabinet? And, well, it’s kept me from falling down and breaking feet or knees on more than one occasion. I like NOT having broken bones, truly!
I have two canes…my grungy one, very well used and standard issue from the hospital for an issue prior to my CIDP. The other one, I shopped around on-line for and I call it my ‘dress’ cane. There are many, many styles! Many are metallic or other substances and come in lots of wide colors, and others are classic wood with amazing handle styles as well as prices. There are also collapsable or folding canes that come in colors as well so you don’t have this ‘stick’ for others to trip over. As for how other people deal with MY using a cane? Well, first off, it’s none of their business, so I agree with all above about the less said the better. Second, YOU have to, you MUST think of your own safety both now and in the long term! Just be sure that you get your cane adjusted or cut to the best and most comfortable height for you! Having one too high or low can create more problems than it can help.
For super noticability? Go to an auto shop and get some adhesive reflector stick on tape? And Duct Tape does have a very wide variety of colors to choose from as well. Sooo, now all you have to do is go on-line and pick one, print out the page and give it to your DH and say….I want THIS! Betcha you’ll find it under the tree? And,….he’ll be proud that he did it all himself! Betcha! [I know my own DH was!]
Remember too, that HE’s gotta wrap the thing! Just picture that in your mind as you are picking one out! You’ve got to smile a little?
AnonymousDecember 12, 2008 at 5:33 pm
Here are some fun canes I found for you Stacey… just ignore the prices and giggle at the concepts. 😀
Here’s one that has a flask inside
Here is one with an umbrella AND a sword (bet this is tough in the airport)
Here’s one perfect for Halloween – The Black Widow, comes complete with a spiderweb
This one is just plain a work of art
And here is one that is totally clear – you can barely even see it
How about a pool cue?
Some designer canes at reasonable prices – check out the one with the lights!
Anyway if none of these appeal to you just Google “cool canes” and take it from there. 😀
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