Newbie- nuerontin question
AnonymousJanuary 6, 2008 at 6:36 pm
I was Dx with CIDP back in 2003. Symptons have been relatively mild, and I have been able to do life pretty much as usual. Mostly numbness in the feet and calves, and some joint pain. Did not want any meds if not necessary. Fast forward 4 years, and now the numbness has moved up into my thighs. But the more alarming aspect to me was the fatique that I started feeling in the muscle itself, like I had just finished running a long distance. Plus I can tell that I am loosing strength in my arms. I have moved to a different state since my original Dx, so I am seeing a different neurologist, and of course he wanted to do his own test to confirm what is going on. Nerve conduction, bloodwork, and a MRI on my neck. test came back and he felt it confirmed CIDP. Biggest change was found in the bloodwork. He said there was a protein (i think thats what he said) in my blood that is indicative that my large muscles are breaking down. He wanted to use that as a benchmark, and check and see if it changes.That was all done back in october, but the pain and weakness in my legs has become really intense. When I contacted his office this week, they called me back and said he wanted to put me on neurontin – 300mg, 3time per days. My question is this a typical treatment for the muscle weakness , or does this address the pain only? Also, I have taken the neurontin for 2 days now and I feel Very sleepy, does it always make you feel spaced out ? Thanks for your input.
AnonymousJanuary 6, 2008 at 8:20 pm
Hi there, I’m new to the boards. I’ve been on Neurontin 300 mgs 3 x’s a day since November 23. It has really helped with the numbness/tingling/burning pain in my extremities, but I am not sure if it helps with other types of pain, i.e., muscle pain, etc. I too experienced feelings of being sleepy and whacked out in the beginning, but those feelings went away after a couple weeks. I am able to work a normal work schedule while on it, drive, whatever I need to do. I know others take much higher dosages also, so I do think the body gets adjusted to it.
AnonymousJanuary 7, 2008 at 5:07 pm
Welcome and yes when most people start neurontin they are sleepy. These symptoms usually get better after a couple of weeks. If you can’t function cause you are too tired gradually increase your dosage over a week or so.
Any mention of IVIG?
Rhonda from Canada
AnonymousJanuary 7, 2008 at 6:29 pm
Just wondering what the neurologist is offering to actually treat the CIDP? The reason you are progressing is because it is not under control. You need an immuno-modulator to stop the progression any further before you can start to heal. Most people get IVIG, prednisone or plasmapheresis.
As for the neurontin, it’s a drug that just treats the pain. It doesn’t do anything for your muscles…thus the need for an immuno-modulator as mentioned above.
I Googled neurontin & came up with this website:
It says: “Use caution when driving, operating machinery, or performing other hazardous activities. Neurontin may cause dizziness or drowsiness. If you experience dizziness or drowsiness, avoid these activities. Avoid alcohol during treatment with Neurontin. Alcohol may increase the risk of having side effects while taking Neurontin.”
I think drowsiness is just an average side effect of the drug.
Hope that helps,
AnonymousJanuary 7, 2008 at 6:35 pm
Charles it looks like your CIDP is getting worse. If your large muscle is breaking down then you definitely need IVIG. I got CIDP in 2004 and just last summer got 5 days of IVIG for the first time and I am going back later this month.
Definitely tell him you want IVIG pronto. Pain and muscle weakness gets better with IVIG or if you can’t afford it prednisone. But prednisone would be your very last option because of the side effects.
AnonymousJanuary 7, 2008 at 9:27 pm
Thanks all, I appreciate your insight. I think I’m at a crossroad with my illness. I have read many of your stories and realize how fortunate I have been, as my symptoms have been very mild. I often think I should just ignore it and press on. Yet, I can tell that something has changed, and it is moving up my legs, and possibly now effecting my arms. As I mentioned, I have a new neuro, yet I have only seen him once. He had one of his understudies review the test results with me. I left the office with more questions than anwsers. When I called last week, requesting to see the Doctor,the nurse called me back with the neurontin prescription. My next appointment is not until May. I think that I will call and ask of an appointment asap, and ask for a detailed explaination of what the test showed and what is the course of action. Or, am I being overly concerned? I don’t want to overreact, yet I don’t want to risk my health. Thanks for your comments. Charles
AnonymousJanuary 8, 2008 at 1:34 am
hi charles & welcome,
900 mg/day of neurontin which is for pain only is lo. you can go up to 5600. if the Dx is cidp, there is no need to go over your tests. the docs are delinquent in not Rxing ivig or pp. i suggest you make this happen. it’s your life not the docs. they should know better. where do you live? take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJanuary 9, 2008 at 10:12 pm
Thanks for the welcome Gene. I now live in Greenville,South Carolina. I was first dx at Emory when I lived in Georgia. I get the feeling that my Dr. doesn’t think that my symtoms are alarming. But then again, I have not been able to speak with him since my initial consultation, so maybe he has not even looked at it. I am requesting an appointment with him to review what direction are we going with this. If I cant get a timely appointment, then I guess I will start looking for a different Dr. Charles
AnonymousJanuary 10, 2008 at 4:07 am
Charles, I definately think you should bump up the appointment. My symptoms progressed very slowly for more than a year but I could feel it moving up my body. Once the weakness and numbness got to my arms I started having trouble breathing only 1 day later, then it was a mad dash to the hospital. My point is that I went from mild symptoms to ICU in about 3 days, it does sound like you are progressing and I think it’s worth getting in to see your Neuro/new Neuro to keep them up to date. I also think you need to be on one of the protocols to stop the progression. Just because you have mild symptoms now doesn’t mean that your body can’t get overwhelmed with the continual assault and get worse suddenly. That’s what happened to me and my symptoms went from just mild to a big fat royal pain in the rear and I don’t think you really want to go there if you don’t have to. Be definitive about requesting treatment, it’s your body and if it ain’t workin’ right it’s up to you to convince the doc to treat your symptoms so they don’t go from mild to moderate or worse.
AnonymousJanuary 10, 2008 at 10:32 am
until May! Call and make an appointment ASAP. If things are beginning to ‘progress’ more rapidly…you have to make your concerns about the progression very clear and [I think all here will back me up], concise about how it’s getting worse. Do not let the doc put you off.
If he does, time to search out for a new ‘second opinion’. Ask your old neuro from Georgia for doctor recommendations in your area, and if your current neuro is on the Ga Doc’s list…have the GA doc give him a ‘peer motivation’ to get on your case!
More progression equals more nerve/muscle damage. It should not go on like this.
Neurontin doesn’t treat the CIDP, it just helps cope with the pain of CIDP…big difference.
AnonymousJanuary 10, 2008 at 12:24 pm
You definetly need to make an earlier appointment with the dr. You need to TAKE CONTROL over your health. Here are a few steps:
1) Ask that you ONLY see the dr…not the lackey, not the assistant, not the nurse. ONLY THE DR!
2) Keep a running list of your questions in a notebook – take the notebook with you to appointments so you don’t forget anything. Don’t feel bad about jotting down the answers that the dr gives you.
3) Every single time a test is done on you get a copy of the results. This goes for blood tests, EMG’s, etc. Get a large binder with folders in it. Keep ALL of your records neat & organized.
4) Stand up for your health. You know that you have CIDP, you know that it needs treatment – not just meds to help with the pain & discomfort. This illness needs REAL treatment. DEMAND IT!
5) If you can’t get this neurologist to give you treatment move on to the next one & keep looking until you can find a dr that will prescribe a treatment plan.
6) STOP ASKING THE DR AND TELL HIM WHAT YOU WANT! Sometimes dr’s need to be told what YOU want to do. Otherwise, they’ll just keep pushing you through the system at their own pace.
AnonymousJanuary 10, 2008 at 11:34 pm
Thanks again for the help. I went by the Dr. office today. I was told that he does not have any immediate openings, but I was put on the cancellation call list. She said it could be 1 to 2 weeks before they can work me in. I will wait and see if I get a call back in the next few days. Meanwhile, I have started making inquiries of other Neuro’s in town. I will take your collective advice and not wait on this, and push to get in.
Emily’s Mom, thanks for the list. It makes so much since. I will definately take a more assertive approach with my health, as I feel that I’m simply a chart in my Doc’s patient file.
What a great blessing you guy’s are. Thanks!
AnonymousFebruary 5, 2008 at 11:58 am
just wanted to update you to what has happened with my situation. I did get in to see my Neuro about 2 weeks ago. He feels like IVIG is probably the way to go. However, he wanted to run 2 more test. I am having an EMG tomorrow, and I have a lumbar punture scheduled later this month. I have never had a LP, and its been about 5 years since I had an EMG.
He said he wants to confirm that the cidp is active, and he also said that its beneficial to document , for insurance purposes, that the cidp is active. That way if it is necessary for long term use of IVIG, due to the high cost, they will be less likely to refuse payment. He said the initial treatment would run about $15K. At least, thats how I interprited what he said.
I’m just ready to get the ball moving, so to speak…
AnonymousFebruary 5, 2008 at 12:21 pm
Charles, IVIG is most likely going to cost considerably more than 15k. The amount you will be receiving should be based on body weight. My treatment at the University of Colorado Hospital in Denver was 65 g each for three days totaling 195 g. I weigh 215 pounds. The total cost was $37,000.
The L. P. that was done two years ago was not a big deal. My neurologist used a fairly thin needle and I hardly felt anything.
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