I agree this forum is easier to search and that is why I came back.
And I agree that all opinions should be voiced – but I feel it should be done in a positive way and on the correct forum. As an example, when Alice posted in Success Stories – that seems to me not to be the place to give opinions/warnings/cautions as she was posting HER story and what part of HER story is open to someone else’s opinion? I really felt like she was attacked and never did understand it. However, it did result in at least one person banned from this website and it wasn’t Alice.
During this same time, another member (can’t remember who – but kudos and more kudos!!!!) posted under the CIP-CIDP forum a great discussion thread on what “cured” would mean to each person. It generated some great discussion and opinions and was glad to read everyone’s views – there were no attacks, only opinions!
This website has a variety of forums depending on each one’s topics and/or circumstances. When I first joined, I went only to the CIP-CIDP forum as I felt I would find more people there like me, facing the same challenges I faced each day. I was glad there were some that crossed the various forums to post good information, but I was mostly glad to find a community of people that had to go through, personally, the same treatments/meds/experiences I did to be able to give me great first hand advice!
I hope we all move forward in respect and I hope folks will come back and feel as if they can easily contribute without feeling attacked by someone else’s opinion!
Yoou have received some fantastic advice and I am sorry you are dealing with all of this. Learn from these people as I did and do not make the mistake that I did. Our doctor had a wait and watch attitude with my two year old daughter and she went MONTHS and could hardly walk. I looked and looked and found a great doctor in our area. Please let people know where you live and who you are doctoring with. The watch and wait doctor that we had was the CHIEF OF NEUROLOGY at a top 10n hospital. She is now receiving ivig and can walk and run nurmally. Please don’t wait and let everyone help you.
I agree with all the above, but have a few other suggests/comments.
First, several people have said that hydrating well the day before and am of an infusion can help a lot with getting the IV started as well as the side effects of infusion. This and warmth to the site of where the IV will be started can help a lot. After the infusion, make sure that the IV is secured well with tape and perhaps wrapped or covered to make sure that the IV is not bumped or moved so that the plastic tubing catheter “needle” is not bent.
Second, no one at the Children’s hospital where I work and where we give lots of IV IgG infusions is a fan of home infusions because a person CAN react at any time. It is only less likely if you have been getting infusions for a long time before. In this world with economics and availability driving a lot the choices of IV IgG, sometimes the brand of IV IgG is changed or has to be changed and you are more likely to react when this occurs. Keep track of what brands you get. The nurse should always have a reaction kit available. This should include IV benadryl, IV hydrocortisone (or perhaps other steroid), and epinephrine to use under the skin if there were to be a severe reaction. None of this has to be “drawn up” to administer, but it should be available.
Third, our hospital has a definite standard for infusions of IV IgG that includes ramping up the rate and taking vitals before the start, before every rate change, and every thirty minutes for the first two hours, and then at least every 2 hours when the infusion is at the maximum rate. There are defined maximum rates of infusion in the PDR and ramping schedules to decrease the risk of reactions or of kidney problems. You should not go faster than that. there should be defined actions for the nurse to take if you get a fever, low blood pressure, high blood pressure, hives, chills, headache, etc. When I got my infusion the first time in the adult hospital, the nurses did not do vitals except the typical once every eight hours. Since this is the same system as the Children’s hospital, they should have been using the infusion “standards” at this institution, but just did not infuse IV IgG enough to know that they ought to do that or that there was a preprinted infusion administration orderset.
Finally, people with neurological reasons for needing IV IgG seem to be a lot more sensitive to the rates of infusion than people getting it because of low immunoglobulin levels or blood reasons. I do not know the exact reason for this, but I explain that the immunoglobulin is being used to alter an immune reaction along the nerves and, even if it is a GOOD reaction, it is still a reaction along the nerves that are primed for immune reactions because of the immune attack on them. This makes sense to me as a reason that many of us feel so bad with infusions.
I also very much have enjoyed Oliver Sachs books in the past. I read his latest on music since this neurologic stuff hit me, but I have had enough strange neurologic phenomenon on my own and have not tried to reread any of his. One of the things that have been discussed regarding this subject, and that I saw best with my mother, is that “Nature abhors a vacuum”. When sensation is not there or something really strange happens to affect perception, the brain tries to fill in the gaps. In his stories, he talks about people making up ways to explain what cannot be understood.
My mother had a tumor that metastasized to her brain. When it was removed, she lost all function of the left side of her body, but also recognition that there had ever been a left side. It seemed to me especially cruel of life that she could not understand why she could no longer walk. She had lots of memories of walking and moving and she had no ability to compensate to relearn walking because she did not recognize that her left side was there and was not working. To her, the right side was all there was and it moved fine, so she asked many times a day why she could not walk or get up any more. She also would pick up her left hand and think it was mine. She did not care about dressing the left side because it was not part of her.
I wonder if the need to look in the mirror were not something a little different. It seemed to me that life changed so suddenly and so irreversibly that I had to search for ways to confirm that this was still me–to reaffirm my identity–and also that this was not some long nightmare. I also wonder if the perception of the legs as dead and looking different is not an effect in the brain not just the periphery. Needing to look at legs that have no feeling seems what a brain might do to see if they are still there. The fact that they looked so different to you, though, may be just your brain filling in the vacuum, but it feels to me like the brain altered the image. There are more and more ongoing data that none of these diseases is solely peripheral and that there are central (in the brain) manifestations in a lot of people although many experts vehemently deny this. Being really sick and in an ICU on lots of medications can cause alterations in perception as well. If ever anyone has an altered image of a body part, though, perceiving it as very different than it is to others, I hope that an MRI of the brain is done just to make sure that there is no problem in the brain that might be leading to this alteration in perception.
WithHope for a cure of these diseases.
Agree with above. Most back problems in people are in the lumbar spine in the “small of the back” in the area where the spine curves forward and back. Thoraco-lumbar indicates that this problem extends higher and goes with muscle weakness along the length of the back. the spine has four parts. The cervical is in the neck from the skull to the bottom of the neck. The thoracic is from the neck to the bottom of the ribs in the back. Ribs come off each of the thoracic spine vertebrae. The lumbar spine in below the ribs to the top of the pelvis and the sacral spine is the very bottom to the tailbone.
I am also coming to the Symposium and would love to meet all of you “cyber family” members for the dinner or pajama party. I am coming Thursday night and was planning to leave Saturday night to drive home. The program for Saturday ends at 5. If this gathering of forum members is going to be Saturday, may I ask that we maybe meet kind of early, like 5:30 or 6, not a lot later so that I might could come for a while at least. If this would not work for the group, thats okay, but maybe there can be another way to meet up with the others of you attending. Are most people staying until Sunday? Are people planning to wear their screen names on name tags? I have never attended a conference without name tags, so I would guess we will have them??? Many people’s on line “name” is very different from their “real name”–I am starting a “decoder” card!
160/105 is pretty high, so I agree that if it is staying that high, you should be seen about it especially with the headaches and the nosebleeds, both of which are signs of high blood pressure. Are you urinating okay? IV IgG can bother kidneys and this can lead to high blood pressure. IV IgG is a protein load and salt load (since it is in normal saline) and so I think it is not terribly uncommon for the blood pressure to rise when getting it, but it should not remain high two days after. Pain (as from headaches) and worry may increase blood pressure as well, so try taking some pain medicine. If you are urinating okay, keep drinking water/fluids and try to avoid salts and recheck the BP.
WithHope for cure of these diseases
I think that it would be a challenge to start on two drugs like those together since both require a little bit of getting used to them. It is recommended to start the Cymbalta at 30 mg daily if someone is “older” or sensitive to medicines. I will not admit to the former, but I started at 30 mg daily for a week before increasing to 60 mg daily. It has helped my neuropathic pain a lot. I am not scared of stopping it–just will do that slowly. I have been on it for about five months and it is still working fine. I have never heard of Cymbalta stopping working after a few months and I read several things about it (PDR and full drug information and a drug book’s information).
I have never been on neurontin, but have had many patients that I help with on it. It is wise to start slowly and increase. If this is helping you, increase the dose a little every day or other day until it helps enough–like one pill in addition (ie, go from 1-1-1 to 1-1-2 then 1-2-2 and 2-2-2). If you were to get to a point that it made you feel too sleepy, then might be the time to try an alternative (instead or in addition), but really it is very hard to start two such drugs at once. Listen, you can adjust to both, so I would not rule out trying Cymbalta again in the future if neurontin was not enough.
You should be okay without withdrawal symptoms after being on this for three days. You body is still really new to it and there would not have been modulation of receptors or redistribution of neurotransmitters as you would have barely had enough in your body to reach full dosage. I hope that helps relieve a little concern for you.
WithHope for a cure for these diseases