Help! with a little bit of venting involved…
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April 10, 2007 at 4:41 pm
Okay I know I have posted in other areas over the past few days, and although I know some things, evidently I am more clueless than I thought…
Those of you who have been dealing with Mag and CIDP forever can start shaking your heads now and go oh dear little naive one….
I went to the neurologist’s today for my monthly IVIG treatment and to see the doctor. She always does those strength tests and asks me how the month went, etc.
Since I found your forum, some things have become clearer and some have been confusing, so I wrote down my questions for her to answer. To answer someone else’s question to me…in order to see Dr. Pastronk you have to be approved by him before you can get an appointment. The neurologist I see was in his practice before she came to the hospital where I am treated. Dr. P’s office told me to stay where I am because they are still “researching” together.
So I learned today that CIDP is an umbrella and antiMAG is under it. I was NEVER told that I had CIDP so had no clue. Evidently, I do. So then I asked her about pain medications. I have tramadol and vicodin at home but there are a few days a month when they don’t even work. Is someone taking anything other than those two? I’d like to know about the progression of this disease. What should I expect? I was just diagnosed in August but I feel like if I know what’s coming I can prepare. I have three kids, parents who live 800 miles away and I’d rather know what’s coming than to be blindsided. I also understand that with anything that is rare (I am assuming this is a rare disease but is it really?) there are unknowns but someone has to know something. Is there a life expectancy?
I have heard antiMAG compared to ALS and MS. Is it similar? How is it similar/different?
In my little world I keep thinking that at some point someone will say you’ve taken a year of treatments, you’re cured. Is that a possibility? I just don’t know anymore. Help??
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April 10, 2007 at 5:59 pm
Kel,
For nerve pain the Tramadol and Vicodin won’t touch it. Neurontin (Gabapentin) or Lyrica are what most of us take.
Jerimy
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April 10, 2007 at 6:09 pm
Hi I am also in the learning stage, but I do know from reading on these forums that there is a very nice man named norb that has antimag. I had some questions and he responded with a nice long explanation. check the members list and maybe he can help you too! I hope you are not offended Norb. Dawn:) 🙂
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April 10, 2007 at 6:52 pm
Jeremy, my insurance won’t cover lyrica because I do not have what the FDA approved it for. I am so aggravated with the insurance, you have no clue.
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April 10, 2007 at 7:32 pm
Kel,
I would be angry too. I know my doc told me that Neurontin was for seizures? I put a question mark there, because I think it was Neurontin and not Lyrica, and I think he said seizures. My doc just put me on Lyrica, but I honestly thought (or so the magazine adverts show) that Lyrica is for certain pain i.e. The pain associated with neurological ‘illnesses’ as such. Sorry I may sound really gullible in believing the ad’s, specially as I walk around a lot of the time telling the kids that they cant believe what the ads say. 😮
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April 10, 2007 at 8:17 pm
Kel, I know how frustrating this.. I am two years into this
avid runner surfer etc…. so i understandthere is a tremondous amount of literature out there on this
do a google on anti-mag.
and do your hardest to get into Pestronks lab/ from what I can see he’s doing alothang in there
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April 10, 2007 at 10:47 pm
Maybe I am doing something wrong. When I was first diagnosed I googled and yahooed to death. I have done searches on antimag but it seems what I keep coming back to is Dr. Pastronk’s site with very little answers that I can understand. I will call his office tomorrow and see what I can do about begging for an appointment. In the meantime, I will google some more.
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April 10, 2007 at 10:48 pm
Kel, you asked what to expect. At my second appt with the nuero I asked him point blank, “will I end up in a wheel chair”..and he told me no. I am going to ask him again b/c Ivig isnt working…
I dont really think dr’s can tell you for sure. I had requested my records b/c I was determined to get another opinion. I wanted someone to tell me I didnt have this CIDP stuff. I read in his notes to my primary dr that while I had SOME chance at a good prognosis, I may have idiopathic illness and relapses for life. I took that as a big, we dont know. I am only 36 !
Everyone is different. My dr said there is no cure but it’s treatable. Finding the right treatment is the trick.
All of the people on here are super . I dont know about the antiMag but like DawnKellies mom said, Norb is very nice and seems very up to the latest on the info. Michaeljay has alot of good info, too.
I was in a big boat named denial. You will have good days and bad…my emotions were the worst and this forum is very helpful…I’m sure you will agree.
good luck to you !
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April 10, 2007 at 11:19 pm
Thanks Mom! I thought I asked her point blank today but evidently not. LOL
I have my wheel chair already because in order for me to do things with the kids (like the zoo, science center, etc) I need it, otherwise, I am pooped, lagging and on the sofa for a week after with swollen feet and not feeling well.
I am only 40 and I was raised on the belief of if you don’t feel well push on, you’re not going to die. So I feel guilty and lazy that I chose to get the wheel chair. Should I have pushed myself more? Am I being lazy or is this normal? I guess that is why I need to ask these questions and talk, because I just don’t know. My doctor is of the attitude that if I need the chair to enjoy myself and be with my family then use it. I just have mixed feelings about it.
I met Allaug on here yesterday and I can’t wait to meet Norb. Michael and Jeremy have been amazing! It’s been nice just to talk and know I’m not alone. I have heard so many people tell me they can’t help me, it’s nice to hear that I’m not alone.
As far as the boat of denial goes, do you have room for one more? 🙂
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April 10, 2007 at 11:41 pm
I had one of the worst cases of CIDP my neurologist (who is a specialist in GBS/CIDP) had ever seen. I went from perfectly fit to a power chair in one month’s time, with almost no use of my hands. I would remain this way for over two years, as I was refractory to IVIG, PP & steroid treatments. Anyways, today I walk with AFOs, & use a cane outside the house. If I get 10-11 hours of sleep a night, I think I lead a fairly normal life for someone who is now 53 (5 years out.)
About the wheelchair, by all means use it to conserve your energy. We are given just so much per day & sometimes it is a balancing act on how to use it. If you push yourself, you will only pay dearly later on for it. I also use a wheelchair for long distances, but not for things like grocery shopping or a trip to Target. If I can psh a shopping cart, I find I can walk much farther.
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April 11, 2007 at 12:00 am
[QUOTE=kel0317]Jeremy, my insurance won’t cover lyrica because I do not have what the FDA approved it for. I am so aggravated with the insurance, you have no clue.[/QUOTE]
Ask for Neurontin if they won’t give you Lyrica. All Anti-seizure meds are given to people with neuropathies. It helps by blocking the pain. Most Drs should know this. The insurance company might need a written letter why the Dr has prescribed it for your pain..
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April 11, 2007 at 10:16 am
Definitely ask for neurontin, as now that it has gone generic (gabapentin), it is fairly cheap. Insurance companies often refuse the newer more expensive drugs. But I believe that it has been approved for pain due to damaged nerves.
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April 11, 2007 at 12:04 pm
If all else fails Pfizer has a program to get Neurontin and Lyrica to people who need it and can’t afford it or their insurance wont cover it. If you go to Pfizers website it’s called the Connection to Care program I believe. If I can be of any help just let me know. Take care.
Jerimy
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