GAT

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  • GAT
    November 6, 2014 at 9:55 pm

    Dgover521, Five years ago I was having lots of difficulties and feeling terrible. I went about 13 doctors or appointments including two different ER visits and a neurologist with no help at all. I was about to give up hope figuring what was wrong. Luckily someone recommended Dr. Stephanie Reiman at Bridge mill Neurology.She is located at exit 12 off of I-575 in Woodstock Ga. She has and is treating around 12 CIDP patients around North Ga. Extremely knowledgeable,personable, dedicated to great patient care. I cannot give her a better recommendation and certainly saved me.

    GAT
    January 10, 2012 at 9:08 am

    As you read and learn about CIPD and IVIG you will see that every one is different and react different to treatment. For me after three years I give my infusion center the dates I want and need. I get mine every 28 days +\- one or two days. Any more and I lose ground. About a week prior I start feeling a little worse and up to a week after but then will be OK for the remainder. My guess it will take some time to find your groove.

    GAT
    October 5, 2011 at 9:17 pm

    Almost all of my pain is around my bladder and stomach. I have had pain for two and a half years. I am convinced it is nerve damage in the lining mostly where a hernia would be. The pain is always there. Between Neurotin and Tramidal I get by OK. Because it was not the normal thing that normal people with CIDP it took months and eleven doctors to finally figure it out. Keep going until you find a doctor who will get the best treatment and the best pain management without too much pain medicine

    GAT
    September 30, 2011 at 10:43 am

    This stuff can certainly frustrate you the beginning. As we speak I sit here hooked up to my IVIg . It’s easer as time goes on. You indicate your on steroids . See if you can start IVIg, it keeps me going with my normal routine. good luck as you process through this disease.

    GAT
    August 5, 2011 at 5:35 pm

    I have been on IVIG for 2 1/2 years with good results and go every 28 days. I have seen previous post about rate and know it makes a big difference. I left the center about an hour ago. I ask the question to my nurse and she said the policy for there center is 100 the entire time of infusion rather then slow and then speed up the process. Works well for me. I also like the benedryl as I sleep like a baby and the day goes by fast plus keeps down any side effects. Good luck on your treatment.

    GAT
    July 13, 2011 at 9:32 pm

    I was like you. Have a horrible day and you start thinking the worst it’s just natural. My Neuroligist when I first started told me some days a truck will run over you, She was right. One day is awful but latter it gets better.She says Doctors don’t understand why. I to had shortness with my wife,grumpy anxious and other issues. My Doc gave me Lexapor and I bite one in half everyday and now am doing much better. The bad news is with time you learn the hard way what works better and what to expect. This stuff is not easy and can be very difficult on family members. Ask for help.

    GAT
    July 10, 2011 at 4:37 pm

    I have great doctors but they read medical textbooks and it has limited information so usually the answer is no or I don’t know. The week that all my symptoms started I also started with ashma ,both my Neuroligist and pulmalogist said no relationship.I don’t believe them. As for cold feelings I keep an electric throw comfortable in my chair and the rest of the family will be sweating and I am under it to my nose. It is not so much the temperature as a celing fan with air movement. Hang in there and continue to educate the medical field.

    GAT
    May 26, 2011 at 9:55 am

    Many of us with CIDP searched long and hard until we found a doctor that was willing to keep looking for the correct answer. After 12 I found one that knew what she was doing and got me on IVIg within days. Two and half years and I am stable. I live in a smaller town and she has 12 patient so find one who at least knows what initials mean. Keep looking and don’t give up.

    GAT
    April 12, 2011 at 6:57 pm

    I consider my self lucky. After 30 infusions I have had very few problems. Recently when I am almost through with my 40 g I break out in a bad rash around my waist. They add stuff, probably steroids and knocks it out fast. If you have any options find an infusion center that gives IVIg regular and knows about how and the weird effects that can come with it. Find someone who doesn’t mind you staying as long as necessary as the rate they dispense this stuff makes a difference.

    GAT
    March 23, 2011 at 6:37 pm

    I have had the pain and electrical tingling. Can I assume you take Neurotin or the equiventent for this . Without it I would be uncomfortable This is my third day after treatment and today seems a little stronger. It may be the IVIg or just a sorry day with out explanation.

    GAT
    March 22, 2011 at 10:21 pm

    My nurse called me today to check on how I was doing. there is nothing better then caring professional that worries about your well being and wants to help. I’m sure their are many folks that will say the same for their infusion nurse. I ask about slowing down the rate but didn’t think was the trouble. She said they would add a steroid along with the benedriel and see how that works. We will see.

    GAT
    March 16, 2011 at 7:05 pm

    Several opinions. seems the spinal in an important test to help determine diagnosis. There not fun but if it gives you a good answer then worth it. I had no pain afterwards. This stuff affects people differently and varied. IVIg saved me. My five day loading dose gave me a flu like symptom. Once the infusion center knew that they slowed the rate and all symptoms went away. I look forward to my infusion of 40 g every 28 days because it gives me relief The one thing I didn’t know about and was not expecting is how this stuff can affect you mentally. Talk with your Neurologist and let them help you. my issue is related to the side effects of steroids as a per medication for the IVIg. When I knew I was snappy to my wife and kids I ask for help and started very low and slow and deal OK now. Keep the faith.

    GAT
    March 9, 2011 at 3:06 pm

    if you read the forum lone enough you will find the stuff effects each one different.For me I have been on IVIg for two years. my Neuroligist would not consider steroids because of side effects. my issue is pain not mobility. I have improved lots since I started 40grams monthly. if you chart your condition with your schedule of IVIg, weather,stress,and tons of other factors you will find some days a truck ran over you and some days you fell OK. that was what my neuroligist told me about any autoimmune and I think she ws correct.

    GAT
    February 10, 2011 at 10:12 am

    I too have had CIDP two years this month. Mine started and continues almost entirely in my bladder. Actually I am convinced it effects the lining of my chess cavity and moves around. This is why it took many doctors to determine what I had as it didn’t fit the medical book explanation taught in school. I take IVIg every 28 days and Neurotin and Tramidal and manage OK and tannkfully seem to be steady. While I was trying to get a dianosis my doctor was honest and told me if I ask 10 doctors you will get 11opinions. I think he was right.

    GAT
    January 12, 2011 at 7:01 pm

    In 1976 the military was given Swine flu shot plus the regular flu shot. I still contend they used us to experiment. As you know there were several cases of GB and the next year it was stopped. With my military I have not missed a flu shot for 40 years and didn’t want to stop. This year they mixed H1N1 with the regular medicine. I was concerned and I ask both my Neuroligist and Hemotoligist if they thought it safe. They were of the opinion that advances have been made and recommended to take it. I did not have a problem and will continue to take it. It however is a difficult choice each have to make.

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