Going to Do Another EMG
AnonymousSeptember 7, 2008 at 1:46 am
So I went for a follow up with the doctor on Friday and she was thrilled with my progress – so that was good news! On the other hand she was ready to go back into the wait and see mode for when they will treat again.
You know last year I probably would have said, Okay and smiled and left the office, but from all my wonderful friends here I have learned to fight for myself…. So I brought up the leg pain [U]again [/U]and asked if she was considering that to be a residual then, instead of active CIDP? and she didn’t really have an answer. So after much discussion back and forth it looks like I’m going back on Monday morning for another EMG (Had one Sept 07 and on Nov 07). She said based on that result she’ll be able to determine if there is active demylenating going on and be able to tell if the leg pain is active or residuals. Then we can determine a treatment path from there.
I’m happy to get answers, but why is it we always have to fight for these things? Oh well! Again a HUGE thank you to all of you who have provided info, motivation, and support so that I can confidently question a doctor and look out for my own best interests! 🙂 🙂 🙂
Oh! and I also found it funny when I said “the full life of IVIG in your system is 42 days, right?” and she responded that she would have to look that up to be sure. She did look that up and confirm that I was correct before I left the office – score one more for my online CIDP buddies!
September 7, 2008 at 10:52 am
Have to go to church now, will respond. We see Our doc Thurs. Maybe if you like he could talk to her.
AnonymousSeptember 7, 2008 at 10:33 pm
[COLOR=black]IVIg does not have a “full life” of 42 days. Lifetimes for drugs and biological products like IVIg are quoted as “half-life”. Half-life is how long it takes to get to half of the original dose. For example, IVIg is estimated to have a half-life of 21 days (this number is more or less the average; in some people it is a few days shorter; in other, it can be a week or so longer). So if the dose was 60 grams, then 21 days later, there would 30 grams of the original dose. However, that does not mean at 42 days, there is none of the original dose. Instead, there is 15 grams of the original dose. At 61 days, there is 7.5 grams of the original, and so on.[/COLOR]
[COLOR=black]I hope this helps.[/COLOR]
AnonymousSeptember 7, 2008 at 11:09 pm
It is very important to fight for yourself, and most importantly, to make sure the Dr. answers ALL of your questions. I am glad you are asking them, and looking for answers. The only way we can advocate for ourselves is to become knowledgeable. It helps so much !!
As to “pain”. I am by no means an expert, but I suffer with it as well. At my last app’t on August 28th 2008, just the other day, I asked my neuro about pain. He didn’t dodge my question, but he had no real answer. He said that determining pain according to tests is nearly impossible. Some people have tons of pain with smaller “symptoms”, and some have virtually no pain with “more severe” symptoms. He told me that if hw could figure out the pain thing he could win the Nobel Prize.
In many respects I agree with him. My last EMG, In August 2008, showed little progression since my 2004 EMG. But in the past four years, my pain has honestly tripled, my ability to move has decreased, and I have almost no ability to move without pain. He offered no real explanation regarding my pain prognosis and encouraged me to continue to pursue pain management in every way, medically, mentally, and physically. I intend to do so.
I guess where I am going with all of this is to help you with some realistic expectations. I am not absolutely certain that a certain amount of damage equates to a pain level, or that active demyelination or residual damage means more or less pain.
Please do not think for a minute that I think your pain is not real. I have to fight that battle constantly, and it annoys the heck out of me. People look at you and can’t SEE something broken, and then think you are faking it or whining oir whatever. I hate that.
There may always be some level of pain that you end up with. You should do everything you can to limit your pain through all avenues available to you. I hope that your current treatment regimen has a pain management component to it. When you talk about your pain, try to separate the neuropathic parts like burning, tingling, shooting pains, sharp blasting pains, hot and cold pains, etc. The other pains may be deep muscle aches, tendon tenderness, “It hurts to the bone”, cramps, sharp muscle pains, etc. If you can define your pain to your Dr. better treatment could be possible.
Good luck, and keep on sticking up for yourself.
September 7, 2008 at 11:43 pm
Not everyone can get a full life, it depends at what rate your body produces the autoantibodies, I guess, how fast it uses up the ivig. That is why everyone is so different. Someone like Kevin could get the full 42 days, it is about 5 months after ivig (previous experiences when we thought it was gbs, not a wait and see approach) But as we know, once we feel the symptoms, they have been happening to the body for a while. But you already know all that. Now we just have to convince Dr. Soni. We will have to refer to the Rush commercial where all of the docs confer. Check your pm.
Dawn Kevies mom
AnonymousSeptember 7, 2008 at 11:44 pm
Thanks for all the great responses! I did tell my doctor if this is where I am at now, leg pain & stiffness, then I can deal with that, as long as I know there isn’t any more damage being done. I just don’t want to ignore something and not treat it because it doesn’t “fit”.
I’ve said before my pain is more like a really bad muscle tightness, a tight heel cord, especially in the morning. Its hard to stand up and takes a while to walk it out and loosen it up. Its always funny because people are always offering me a chair to sit down, but I’m actually more comfortable standing because it keeps my legs stretched out.
I know exactly how you feel about looking fine and people thinking you’re recovered. Its hard because I strive to be positive on a daily basis, but struggle with how to answer people when they say “You look great! You must be completely healed!?” Usually I just smile and say, Yep! I’m doing so much better than I was! and leave it at that. With family I tend to give more details but some of them have already tired of listening.
Oh well…off for the test in the morning!
Thanks again everybody!
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