Its interesting because IVIG therapy has been around for several decades now. And it is used as standard treatment for numerous disorders. But only recently have they been studying IVIG therapy for POTS. And so far it has been shown to be very effective.
I know how it is. I been diagnosed with CIDP and it took forever to be diagnosed. From doctor to doctor finally I found a phenomenal medical team. Without them, I would have never known what is going on.
Its amazing before switching to home therapy, the hospital that I was going to for my treatments had a therapy dog that came to visit me. And it made all the difference in the world. To the point that now I have my own service dog. And she is phenomenal.
Glad you're doing okay. As someone who has cerebral palsy which is a neuromuscular disability I've had since birth, I understand everything you deal with. I am fortunately a medical research subject for doctors who specialize in my condition in order to help younger patients reach new limits in living a societally speaking "normal life". And sometimes it feels like I know more about my disability than they do, yet I'm still in school. What part of NEUROMUSCULAR is not understood?! Anyway I understand completely, I hope you and the baby are doing okay, best wishes from New Jersey.
I know how it is to fight with insurance companies. I been fighting with them for 7 years to get the treatments that I need. But like you said, fight for what you need. Thats the only way to get your treatments that you need.
I know how hard IVIG can be very draining on the body, but hang in there. There is hope to your condition. The more and more they study POTS, the more and more they are seeing success with IVIG treatments.
Like POTS, CIDP is very rare. I in 100,000. So most doctors don't know about the disorder unless you go to a specialist. So it is very hard to diagnose. And it can take a very long time. I been on IVIgG for almost 4 years now. It was my only hope at treatment.
cloud is mostly retired unless needed for anything. and yes i have years ago, it was a psychiatrist who i had just walked into their office for the first time. they told me to remove the dog and wouldn’t listen to me when i tried to educate, tried asking for paperwork and wouldn’t take my doctor’s note. i left and never came back there, it was a very traumatic experience.
@@VisualMoss that is horrible, especially for someone in the medical profession! I recently found your channel and if you don't mind, I have a 14 yr old daughter who is needing a service dog. We don't even know where to start. Any suggestions? She suffers from Systemic Juvenile Idiopathic Arthritis that leads to MAS (can be deadly). She hasn't been able to be around other's and has been in isolation since she needs constant monitoring. Also congrats on the pregnancy!!
Curious as I have a family member also with POTS what does the infusion therapy do for you and in what ways has it been beneficial if it has been? It is definately a struggle to be heard and acknowledged on this as far too many chalk it up to anxiety or similar things so glad you have someone listening and working on your side. Subscribed recently and congrats on the pregnancy!
After 6 months of IVIG, symptom severity was reduced by nearly 40%. Autonomic function testing showed improved cardiovascular functioning by 50% and a reduction of anhidrotic areas by one third.
POTS is a rare disease. So studies are very hard to conduct and to research. But a recent study had 6 individuals with POTS. All 6 been treated with IVIG therapy and all 6 seen an improvement in their symptoms by 6 months.
A large percentage of POTS patients were found to have a platelet storage pool deficiency and a similar trend has been observed in other autoimmune diseases. The thought process is to get parts of the blood from healthy individuals and infuse it to people with certain disorders in order to help boost their own immune system and to help with symptoms.
@@bdogg20101 thanks! That's good to know and that shows some promise. I will discuss with my daughter who is currently struggling through this away at college and see if she can coordinate with the doctor as that sounds like a significant benefit. We battled through this for years on the roller coaster of misdiagnosis not knowing what it was only to find it ourselves thanks to a Fitbit we gave her as a Christmas present and the internet a few years ago in high school.
a little over two years ago I fell on my rist. We went to a lot of docters, a few weeks ago I went to an other docter and on the test I did, you saw I have arthrosis and that docter said 'You're to youg to have arthrosis." and now after two years where still nowhere. I'm still in a lot of pain and can't do the things I like anymore :(And I know it's not the same as you have, but that docter didn't even look at the test, I think that's something that's really unprofessional.
I am fighting to get a new neuologist :/ mine just left without notice. So I am trying to find one that is right for me. So I am having my seizures and haven't had an apointment since earlier this year
If you need a specialty neurologist in Hawaii, I have the top neurologist. He is phenomenal. He was the only one of 50+ doctors that actually found out what was wrong with me. If you need his name, please let me know.
Its interesting because IVIG therapy has been around for several decades now. And it is used as standard treatment for numerous disorders. But only recently have they been studying IVIG therapy for POTS. And so far it has been shown to be very effective.
I know how it is. I been diagnosed with CIDP and it took forever to be diagnosed. From doctor to doctor finally I found a phenomenal medical team. Without them, I would have never known what is going on.
Its amazing before switching to home therapy, the hospital that I was going to for my treatments had a therapy dog that came to visit me. And it made all the difference in the world. To the point that now I have my own service dog. And she is phenomenal.
Glad you're doing okay. As someone who has cerebral palsy which is a neuromuscular disability I've had since birth, I understand everything you deal with. I am fortunately a medical research subject for doctors who specialize in my condition in order to help younger patients reach new limits in living a societally speaking "normal life". And sometimes it feels like I know more about my disability than they do, yet I'm still in school. What part of NEUROMUSCULAR is not understood?!
Anyway I understand completely, I hope you and the baby are doing okay, best wishes from New Jersey.
I hope you get better soon.
I remember watching you on your old channel when I was 10, I just turned 18 yesterday. Time really flies!
I no longer collect webkinz but have still hung onto all of them and plan on decluttering eventually
I know how it is to fight with insurance companies. I been fighting with them for 7 years to get the treatments that I need.
But like you said, fight for what you need. Thats the only way to get your treatments that you need.
I hope you feel better!! I love you and your doggos!
Sending positive healing vibes to you💙
Good luck with your treatments. And congrats on your pregnancy.
congrats on your pregnancy
Always look forward to your videos
I know how hard IVIG can be very draining on the body, but hang in there. There is hope to your condition. The more and more they study POTS, the more and more they are seeing success with IVIG treatments.
I hope your feeling well
hi thx for updating us love the vids. hope you are good
Like POTS, CIDP is very rare. I in 100,000. So most doctors don't know about the disorder unless you go to a specialist. So it is very hard to diagnose. And it can take a very long time.
I been on IVIgG for almost 4 years now. It was my only hope at treatment.
i hope this helps you! infusions changed my life around for the better
Best of luck to you! Is cloud retired or retiring? Have you ever delt with a doctor that was totally against service dogs?
cloud is mostly retired unless needed for anything. and yes i have years ago, it was a psychiatrist who i had just walked into their office for the first time. they told me to remove the dog and wouldn’t listen to me when i tried to educate, tried asking for paperwork and wouldn’t take my doctor’s note. i left and never came back there, it was a very traumatic experience.
@@VisualMoss that is horrible, especially for someone in the medical profession!
I recently found your channel and if you don't mind, I have a 14 yr old daughter who is needing a service dog. We don't even know where to start. Any suggestions? She suffers from Systemic Juvenile Idiopathic Arthritis that leads to MAS (can be deadly). She hasn't been able to be around other's and has been in isolation since she needs constant monitoring.
Also congrats on the pregnancy!!
@@VisualMoss wow sorry that happened to you!
Curious as I have a family member also with POTS what does the infusion therapy do for you and in what ways has it been beneficial if it has been? It is definately a struggle to be heard and acknowledged on this as far too many chalk it up to anxiety or similar things so glad you have someone listening and working on your side. Subscribed recently and congrats on the pregnancy!
After 6 months of IVIG, symptom severity was reduced by nearly 40%. Autonomic function testing showed improved cardiovascular functioning by 50% and a reduction of anhidrotic areas by one third.
POTS is a rare disease. So studies are very hard to conduct and to research. But a recent study had 6 individuals with POTS. All 6 been treated with IVIG therapy and all 6 seen an improvement in their symptoms by 6 months.
A large percentage of POTS patients were found to have a platelet storage pool deficiency and a similar trend has been observed in other autoimmune diseases.
The thought process is to get parts of the blood from healthy individuals and infuse it to people with certain disorders in order to help boost their own immune system and to help with symptoms.
@@bdogg20101 thanks! That's good to know and that shows some promise. I will discuss with my daughter who is currently struggling through this away at college and see if she can coordinate with the doctor as that sounds like a significant benefit. We battled through this for years on the roller coaster of misdiagnosis not knowing what it was only to find it ourselves thanks to a Fitbit we gave her as a Christmas present and the internet a few years ago in high school.
@@RedDawn8488 Your welcome. I would research Neurologist in her area that specialize in POTS.
What are pots ? I have lupus and my doctor denies my service dog for IV
a little over two years ago I fell on my rist. We went to a lot of docters, a few weeks ago I went to an other docter and on the test I did, you saw I have arthrosis and that docter said 'You're to youg to have arthrosis." and now after two years where still nowhere. I'm still in a lot of pain and can't do the things I like anymore :(And I know it's not the same as you have, but that docter didn't even look at the test, I think that's something that's really unprofessional.
I am fighting to get a new neuologist :/ mine just left without notice. So I am trying to find one that is right for me. So I am having my seizures and haven't had an apointment since earlier this year
oh noo
What happened to cloud?
i think she retired
cloud only works when necessary now.
If you need a specialty neurologist in Hawaii, I have the top neurologist. He is phenomenal. He was the only one of 50+ doctors that actually found out what was wrong with me. If you need his name, please let me know.
Maybe you’ll be able to train storm to fetch you diapers (: that would be so cute 🥰