afraid of bears wrote: I take neurontin for Chronic Inflammatory Demyleating Polyneuropathy.(CIDP)
My symptoms were toes that wouldn't move on both feet and shooting pains. Went to doctor, he sent me to neuroligist.
They took a sample of spinal fluid to prove this is what I have.
That sounds serious! Does the Neurontin help you? Bud's symptoms were itching of the calves which progressed to a feeling that he says is like his legs were bitten by fire ants. I didn't grow up in Florida, so am going to take his word for that. He's now taking 300 mg Neurontin at night and 200 mg in the morning. It takes care of the symptoms but he can hardly move, it makes him so tired and sleepy. I hope the relief lasts but the fatigue passes after a few weeks.
Judy & Bud (Judy usually the one talking here)
2004 Pleasure-Way Excel TD
co-pilots, Rosie & Poquita
From what you described, I'd look into Bud having RSD, reflex sympethic dystrophy, the 44th type of MD, MDA only studies the first 40 types of MD, effects 85% women, so RSD is pretty rare in males, but I have it. Also called sudducks disease in the Civil War era.
Feels like your limb is on fire, from nerves. There's not a pain medication that will touch the pain, including morphine.
Ice and ice water baths until you can't stand it. Hurt's like crazy for a couple weeks afterward but then the pain relief comes. It does beat the side effects of morphine and other drugs tho.
Call your local MDA office and ask for the local RSD support chapter as there your best souce of RSD info. My PM is always open!
I wouldn't give neurontin to my dog. It may help some people but it sure didn't help me.
T_Bone
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Well, I think my first instinct was right, you don't treat a symptom with no idea of what's causing it. I went fishing on the internet tonight and came up with an amazing link. Bud started taking Zetia for cholesterol about 3 mos ago. I found a whole bunch of patient ratings for that drug that described similar nerve pain to Bud's, and worse. Many people said that the symptoms subsided within 3 days of going off the Zetia. We're going to try it and see what happens, then call the Dr. That might seem backwards, but with our HMO I know the drill. They prescribe something, anything, to satisfy the patient and get him out of their office. Nobody investigates anything, unless you make a huge big fuss. Maybe not even then. Somewhere I am sure there are doctors smart enough to put two and two together, but we haven't met one lately. I will report back. Thanks very much for the ideas, guys.
I take neurontin, too (600mg, 3 times per day). It has helped a lot with my neuropathy, but does indeed make me tired. I am in pain 24/7, sometimes worse than others. the itching and burning are just the beginning symptoms. Mine hurts to the bone, after many years of having it. I hope stopping the Zetia helps the problem, but then his cholestrol will most likely go up. I cannot take cholestrol lowering drugs because of already having high liver enzymes.
If I may add our experience with neurontin. Our oldest daughter was diagnosed with leukemia back in April, this was a relapse of the lymphoma she was diagnosed with in 2003 when she was 7. She's had many complications with this and after about 7 weeks in our local hospital and 3 more at Boston Children's/Dana Farber, she was able to come home on July 2!
One of the chemo agents she is on is vincristine which is known to cause pain/burning in the feet, and unfortunately, our daughter is suffering from this. They put her on neurontin to help. She takes 3 100 mg capsules a day. It took a bit over a week, but she finally came to see some lessening of the pain.
CA POPPY, you are right to questionsEVERYTHING the doctors do and prescribe. While our daughter had a very positive experience with our local hospital during her first diagnosis, our experience this last time was not as rosy. I won't go into all of the details here, but suffice it to say that we observed errors in medications being prescribed...and this was while she was in the Pediatric ICU!!! (The "doctor" on duty that night prescribed potassium chloride pills to her to raise her potassium level somewhat. These pills shouldn't be prescribed to someone with ulcers, which she had, and 3 hours later she was vomiting blood and had bloody diarrhea. This "sub-optimal prescription" as one of the other doctor's summarized it, caused her to lose 40% of her blood and set her back another week in the ICU.)
Overall, I was appalled at the ease at which doctors will prescribe a medication, and if a new symptom appears in the near future, rather than investigating if it is side effect, they will prescribe another drug to address the side effect. Which, invariably, will introduce another side effect. The next thing you know, there is a buffet of pills in front of the patient: morning, noon & night.
Doctors may be very intelligent people, but in our experience, their communication channels are terrible. The patient, or the patient's advocate MUST be in on every step that is taken. If you're in for a single illness...probably not too much of a problem. But in our daughter's case she had her oncology team, infection disease team, neurology team, GI team and cardiac team. And for the most part, the communication among them left much to be desired.
Good luck,
~Rick
2005 Georgie Boy 3625 DS on a Workhorse W-22 (Class A)
Rick, Gail, 1 girl (12-Angel), 1 girl (7), 2 boys (8 & 5), 1 plump Golden Retriever.
2001 Honda Odyssey with Demco Aluminator tow bar & tow plate, SMI Silent Partner brake controller.
Rick, I found your post really touching. There is about nothing worse than watching your child suffering. Our only son was born a hemophiliac. Lots of medical mistakes were made while he was growing up and I still remember the doctors saying they didn't believe the blood supply was contaminated (early 1980's) and we should keep infusing the factor as usual. Of course, we lost him, as the parents of 10,000 other hemophiliacs, also, did. Point being, doctors do not always know what's safe. They're just guessing and/or hoping for the best. A parent's instinct often beats a medical degree by a mile, in our experience. My very best wishes for your dear girl's future.
Judy
I have just been diagnosed with neuropathy. I have Type 2 diabetes which is managed by my Dr. He is very trained in diabetes and the treatment of neuropathy.
My neuropathy is in the top part of my legs. To touch them feels like a bad 3rd degree burn!! It burns severely when I stand for a long time. He has started me on Lyrica... I haven't noticed a huge difference yet, although I only started the Lyrica about 2 days ago. I would assume it would take a good week or two before I begin to feel the full effects of taking it.
My DH takes 600 mg of Neurontin 3 times a day for his neuropathy. He is NOT diabetic... but has "sensory polyneuropathy" He has it in his hands, legs and feet. His legs are extremely weak and he has to use either a cane or grocery cart to walk. He does walk without aid, but it's very difficult for him. Dr. has suggested that he use a walker... or a wheelchair, but DH won't even discuss that!!!
I am trying the Lyrica, but I'm wondering if the Neurontin wouldn't help me too.
I am a cashier at WalMart... and the standing all day is killing me. However, I don't want to give up my job!! I guess I am going to just grin and bear it... which is getting harder to do!! This pain has just started in the last 2 weeks...
Any suggestions?? Thanks for listening...and this has been a most helpful topic!!
Thanks,
Shirl & Rich
2003 Prairie Schooner 37' 5th Wheel
2007 Dodge Ram 3500 Diesel Turbo Charged Dually IAFF #1476 (RET)
Good Sam Lifetime Member
&
Shelby.. our Black/White Sheltie
From what you described, I'd look into Bud having RSD, reflex sympethic dystrophy, the 44th type of MD, MDA only studies the first 40 types of MD, effects 85% women, so RSD is pretty rare in males, but I have it. Also called sudducks disease in the Civil War era.
Feels like your limb is on fire, from nerves. There's not a pain medication that will touch the pain, including morphine.
Ice and ice water baths until you can't stand it. Hurt's like crazy for a couple weeks afterward but then the pain relief comes. It does beat the side effects of morphine and other drugs tho.
Call your local MDA office and ask for the local RSD support chapter as there your best souce of RSD info. My PM is always open!
I wouldn't give neurontin to my dog. It may help some people but it sure didn't help me.
Huh!!!
RSD or more correctly called Complex Regional Pain Syndrome has nothing in common with Muscular Dystrophy. They are completely different types of diseases. CRPS occurs for some unknown reason in certain people following an injury which may be relatively minor. CRPS is a disease of the central nervous system wheras muscular dystrophy is a group of genetically determined, painless, degenerative myopathies marked by muscular weakness and atrophy without nervous system involvement.
Neurontin and a similar newer drug Lyrica are commonly used in neuropathies to control chronic pain. We don't always know the cause, these are called idiopathic neuropathies.
As with anything on the internet, don't believe everything you read in these posts. Discuss your problems with a qualified medical professional.
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which is getting harder to do!! This pain has just started in the last 2 weeks... 
