Aa
Quick update
Took Jordan to Neuro appointment this week and told him about the melt downs Jordan is having and the pain, numbness and tingling. Switched him from Gaba to Lyrica. We shall see. Said we would try for 2 weeks and then move on to something else if it doesn't work.
The funny part. I know this Neuro is an odd duck but he is smart and he is wonderful with Jordan and he keeps looking and consulting with others. I always wondered why he kept giving us these odd movies and web sites for us to look at (on prescription paper LOL!) One was ...... and the Holy Grail? Anyway, Jordan and his dad watched it and Jordan laughed and loved it. He is always giving us this wierd stuff anyway, finally figured it out-to make Jordan laugh! It works! I had advice (from all of you) to make Jordan laugh and that's what he has been doing all along. Told him about all my friends on here and he said you guys need to watch and look this crazy stuff up too for a laugh. Cracked me up!
He did say he is thinking of IVIG? He admits he is trying to treat the symptoms until solid dx. He says he is not MS Specialist like the other is but he thinks between the two they will get to an answer but is also getting a list together for us to get another opinion if we would like. We asked if Jordan would get better and he said he suspects "that ship has sailed" and this will be long term. He is honest. Ok I said this would be quick. Me quick? Not often!LOL! Hope the Lyrica helps even a little or we will find out the Gaba really was helping??? Everyone stay well, have a super day and feel better!
Just have to add: KU Jayhawks still love ya but UGGGGG! What was that? Basketball I say? LOL!
The funny part. I know this Neuro is an odd duck but he is smart and he is wonderful with Jordan and he keeps looking and consulting with others. I always wondered why he kept giving us these odd movies and web sites for us to look at (on prescription paper LOL!) One was ...... and the Holy Grail? Anyway, Jordan and his dad watched it and Jordan laughed and loved it. He is always giving us this wierd stuff anyway, finally figured it out-to make Jordan laugh! It works! I had advice (from all of you) to make Jordan laugh and that's what he has been doing all along. Told him about all my friends on here and he said you guys need to watch and look this crazy stuff up too for a laugh. Cracked me up!
He did say he is thinking of IVIG? He admits he is trying to treat the symptoms until solid dx. He says he is not MS Specialist like the other is but he thinks between the two they will get to an answer but is also getting a list together for us to get another opinion if we would like. We asked if Jordan would get better and he said he suspects "that ship has sailed" and this will be long term. He is honest. Ok I said this would be quick. Me quick? Not often!LOL! Hope the Lyrica helps even a little or we will find out the Gaba really was helping??? Everyone stay well, have a super day and feel better!
Just have to add: KU Jayhawks still love ya but UGGGGG! What was that? Basketball I say? LOL!
Just to chime in i know alot about IGG!
Intravenous - IG is a blood donor product adminstered via IV. It is plasma from a donor. I've had plasmapherisis (plasma exchange). I have IGG myeloma, so in my case the IG i have is faulty, since that is my cancerous cell, so it does not function corectly and I have a weakened immune system.
The IG cells in your blood (the plasma part) contain antibodies produced in the bone marrow. These antibodies are made when your body responds to an infection. My inference is that in MS, your body is making these antibodies that attack your own self (autoimmune), by giving IVIG treatments you replace the faulty immune systme with healthy donor cells
Intravenous - IG is a blood donor product adminstered via IV. It is plasma from a donor. I've had plasmapherisis (plasma exchange). I have IGG myeloma, so in my case the IG i have is faulty, since that is my cancerous cell, so it does not function corectly and I have a weakened immune system.
The IG cells in your blood (the plasma part) contain antibodies produced in the bone marrow. These antibodies are made when your body responds to an infection. My inference is that in MS, your body is making these antibodies that attack your own self (autoimmune), by giving IVIG treatments you replace the faulty immune systme with healthy donor cells
I will jump in here with IVIG treatments. My neurologist put me on IVIG after I failed copaxone. She didn't want me to try the other crab drugs as they could compromise the immune system as I have had breast cancer.
I have been on IVIG for over a year now and its a pretty darn good treatment. It replaces my out of control immune system with a new one, gathered from many donors. It is given in an infusion over several hours, often with premedication to prevent side effects. I get toredol for pain, zofran for nausea and sometimes some decadron for the IVIG flu I often exerience, most people take benedryl for allergic problems.
Afterwards, I drive home after a little shopping or whatever and try to rest for a few days and not over do it. I might feel a bit puny or have a head ache after 2 days or so as the new immune systems overcomes out the old.
The idea is to teach my immune system to behave, and if it doesn't, it will keep getting replaced to prevent further damage.
IVIG on the whole has been a great treatment. I did have a little setback, relapse, after Christmas when I got the flu and didn't get my temperature down fast enough, but I hope I can continue with IVIG for the foreseeable future. It has very few side effects and all clustered into 2 days if they happen, and those can be controlled easily enough with rest and an advil.
Oh, I have MS.
Jessica
I have been on IVIG for over a year now and its a pretty darn good treatment. It replaces my out of control immune system with a new one, gathered from many donors. It is given in an infusion over several hours, often with premedication to prevent side effects. I get toredol for pain, zofran for nausea and sometimes some decadron for the IVIG flu I often exerience, most people take benedryl for allergic problems.
Afterwards, I drive home after a little shopping or whatever and try to rest for a few days and not over do it. I might feel a bit puny or have a head ache after 2 days or so as the new immune systems overcomes out the old.
The idea is to teach my immune system to behave, and if it doesn't, it will keep getting replaced to prevent further damage.
IVIG on the whole has been a great treatment. I did have a little setback, relapse, after Christmas when I got the flu and didn't get my temperature down fast enough, but I hope I can continue with IVIG for the foreseeable future. It has very few side effects and all clustered into 2 days if they happen, and those can be controlled easily enough with rest and an advil.
Oh, I have MS.
Jessica
It is suppose to bond certain properties within the immune system and help relieve the flares. Talk to the specialists and see. I would consider this heavily as it seems to have good results with risk.
I don't think you are searching for the impossible. I went through nearly two years of feeling constantly flared. It is hard. Be sure to take care of you too Momma. Don't lose hope.
I don't think you are searching for the impossible. I went through nearly two years of feeling constantly flared. It is hard. Be sure to take care of you too Momma. Don't lose hope.
I am not very knowledgeable about IVIG but can tell you that they do this regularly at my MS Clinic infusion center and they do it wiht a large number of patients. Be sure to talk to Jordan's doc about this.
Thanks for the information. I just don't really understand the benefit to Jordan. He had a cold and got over it very well-I did not for as fair as well. We all got the flu and he didn't. I just don't know. His immune system seems to be fine. Put a call into MS Specialist and asked her opinion before considering this treatment. I don't want any more problems. Geez, he just needs a little relief. But, then again don't all of you. I may be searching for something that isn't possible. We will wait and see. Thanks for the info! I really appreciate it! Have a wonderful day!
I am embarrassed to say (after much teasing by my husband) that I have not seen MP Holy Grail. :)
I have heard it is hilarious and am so glad that this doctor is "thinking outside the box." He genuinely sounds like a good doctor. I like the team concept. I have always been impressed with seeing this --- it just seems to work well.
I am not sure what IVIG is... going to look it up.... okay, here it is. I have heard of this in treatments.
From wikipedia. "IVIG is given as a plasma protein replacement therapy (IgG) for immune deficient patients who have decreased or abolished antibody production capabilities. In these immune deficient patients, IVIG is administered to maintain adequate antibody levels to prevent infections and confers a passive immunity. Treatment is given every 3–4 weeks. In the case of patients with autoimmune disease, IVIG is administered at a high dose (generally 1-2 grams IVIG per kg body weight) to attempt to decrease the severity of the autoimmune diseases such as Dermatomyositis. Currently, IVIg is being increasingly used off-label in a number of pathological conditions; the increasing world-wide usage of IVIg may lead to shortages of this beneficial drug. IVIG is useful in some acute infection cases such as pediatric HIV infection as well as autoimmune, such as Guillain–Barré syndrome.[1]"
This may be worth exploring more with the doctor. I'd google it and see about adverse affects. :)
Please know I'm thinking and praying for Jordon, you and your family.
I have heard it is hilarious and am so glad that this doctor is "thinking outside the box." He genuinely sounds like a good doctor. I like the team concept. I have always been impressed with seeing this --- it just seems to work well.
I am not sure what IVIG is... going to look it up.... okay, here it is. I have heard of this in treatments.
From wikipedia. "IVIG is given as a plasma protein replacement therapy (IgG) for immune deficient patients who have decreased or abolished antibody production capabilities. In these immune deficient patients, IVIG is administered to maintain adequate antibody levels to prevent infections and confers a passive immunity. Treatment is given every 3–4 weeks. In the case of patients with autoimmune disease, IVIG is administered at a high dose (generally 1-2 grams IVIG per kg body weight) to attempt to decrease the severity of the autoimmune diseases such as Dermatomyositis. Currently, IVIg is being increasingly used off-label in a number of pathological conditions; the increasing world-wide usage of IVIg may lead to shortages of this beneficial drug. IVIG is useful in some acute infection cases such as pediatric HIV infection as well as autoimmune, such as Guillain–Barré syndrome.[1]"
This may be worth exploring more with the doctor. I'd google it and see about adverse affects. :)
Please know I'm thinking and praying for Jordon, you and your family.
Yes, that's it Monty Python and the Holy Grail! A fresh set of eyes might be good. He has been consulting with Mayo (Ped. MS Speicalist). A few "clerical" errors happened a few weeks ago (with Mayo) and it left me thinking maybe NO but maybe. They called us and diagnosed Jordan over the phone with POTS-NO POTS here-wrong kid! and then told us they could maybe help him in 15-18 months! Um...No! Anyway, wrong kid, wrong file. All worked out but concerning. Neuro called and set it straight from what he said and I think they now know who Jordan is after a 45 minute rant he gave Mayo. Might make it into a nice trip!
Since our house (except Jordan-he LOVES K-State-purple, purple-it's an inhouse rivalry! He of course loved when KU lost-laughed a lot, rubbed it in our face etc... you get the idea!) loves KU win or lose we still love them! Still trying to get over that game this am.LOL!
Since our house (except Jordan-he LOVES K-State-purple, purple-it's an inhouse rivalry! He of course loved when KU lost-laughed a lot, rubbed it in our face etc... you get the idea!) loves KU win or lose we still love them! Still trying to get over that game this am.LOL!
First things first. I feel your pain. My team lost by one point in the last 15 seconds to not only end their NCAA run, but it was to their arch rival. They had split one-one in the regular season and this was the tie breaker. Sad but still happy they are my team, win or lose. These young adults have such pressure on them to perform.....
Now on to this doctor and Jordan. I am so glad he is being realistic with you. His offer for the outside opinion is wonderful and I hope you will take him up on it. He sounds great, but sometimes it takes a set of fresh, objective eyes to see a clue that he might have overlooked or gotten accustomed to seeing.
Monty Python and the Holy Grail - great stuff. Most libraries have excellent dvd collections - you might look there and see what else of MP you can find. Also look for Mel Brooks, Three Stooges and other comedies. Laughter really is proven to be good medicine - it releases endorphins in our brain that make us feel good. I hope you will sit and do a bit of guffawing with the boys as well.
Now on to this doctor and Jordan. I am so glad he is being realistic with you. His offer for the outside opinion is wonderful and I hope you will take him up on it. He sounds great, but sometimes it takes a set of fresh, objective eyes to see a clue that he might have overlooked or gotten accustomed to seeing.
Monty Python and the Holy Grail - great stuff. Most libraries have excellent dvd collections - you might look there and see what else of MP you can find. Also look for Mel Brooks, Three Stooges and other comedies. Laughter really is proven to be good medicine - it releases endorphins in our brain that make us feel good. I hope you will sit and do a bit of guffawing with the boys as well.
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