Going to Do Another EMG

Marjie, I would say Hurray for You!! You scored the most points with the dr!:) Way to stand up and question the treatment plan! You can do anything now!!;) Keep it up!!:cool:

Hi Margie! So glad you stood up fr yourself! We know our bodies better than the doctors do and believe me, I know when my body is acting up and it’s not fun dealing with. I hope things get better for you and wish you well! Hugs

Marjie,
Have to go to church now, will respond. We see Our doc Thurs. Maybe if you like he could talk to her.
Dawn

[COLOR=black]Hello Marjie,[/COLOR]
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[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]
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[COLOR=black]I hope this helps.[/COLOR]
[COLOR=black]MarkEns[/COLOR]
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Marjie,

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.

Dick S

Marjie,
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