I am amazed with the people you have around you. They are truly life savers, very knowledgeable and panic free. Cu-dos to your friends, way to go! When you have a reaction it is quite scary but your friends made it look so easy and uneventful.
I am so glad I watched today, I may be making a trip to Gainesville Florida to see this geneticist. I have one in another state that diagnosed me with H-EDS but that is all he does is diagnosis. I already travel to two other states to see a Chiari, and Dysautonomic specialist so what's one more state!
I'm glad you had friends who knew what to do when you needed them, and that you found a doctor that takes a (more) holistic approach to your medical situation.
Sounds like an amazing doctor! Unfortunately there isn't any doctors in Nebraska that can help me with my eds :( I got diagnosed by an out of state doctor but I can't go to see him! Hopefully I can find a doctor soon!
I am so sorry about your reaction today!! I would be interested in a list of Drs everyone is seeing or would recommend for EDS, Dysautonomia, Chiari, and all of these awful conditions! I'm not getting any help from any of the Drs that I have been seeing! My Neurologist basically told me to my face that she doesn't know what to do or how to help me. The cardiologist I have seen basically blew me off. The only, kind of, help I'm getting is from my GI Dr and he told me to start running and increase the salt in my diet. Running is completely out of the question! My PT said that is definitely not going to be good for me since he can barely keep my body together for 2-3 days without K Tape! I am so thankful that I found your vlog Jaquie! I have learned so much from your journey!!
Lindsay Mitchell I have very similar problems getting doctors that can help me or even want to my primary is good but doesn't quite know how best to help me my neurologist is great at diagnosis but kinda crummy at helping me treat what he has diagnosed
judgebythefruit I don't think that I will even get a chance to even direct my Neurologist. She didn't even have me make a follow up appointment. She wants me to have a Paraneoplastic panel as well as a Voltage gated potassium channel, that is he last ditch effort to help me. My insurance doesn't help cover so my husband and I have a very hard time dishing out that kind of money to just throw at a guess that she is just making.
Glad geneticist has a holistic view. Was just wondering about that in your story. Defining so many different chronic syndromes and disorders can really fragment care, and seems to diminish the chances of uncovering the connections between them, and for curing, not just managing them. Neuroimmunological makes sense to me... ps. Your positive attitude and practice of gratitude help remind me to practice same. Thanks, Jacquie. So glad you are vlogging. Another ps.-- Your allergic reactions SEEM to take place when you are exposed to roads, i.e. gas fumes, petroleum products in general. Have you investigated that?
Curious if the infusion of the lacated ringers could be causing your allergic reactions? Just a thought. I know that lactated ringers can cause allergic reactions, hives, itching, swelling of the eyes, face, or throat, coughing, sneezing, and difficult breathing. Again, just a thought. I'm not a doctor but thought I'd mention it because it may not be something you've thought about. anyhow, hope you're having a good day.
how old are You? and how old is your dad? not to sound rude but have any of your doctor's said that these illnesses are because your fathers age? I've heard its why we at a certain age shouldn't have kids ....
tiffgarcia she has said before that her parents may be genetic carriers for some of her illnesses but she may also have a first generation mutation. They is basically no chance that the age of either of her parent have had any impact on her health
Glen Hunt well she is chronically ill (with even other things completely different than what a geneticist covers) and chronic illnesses don't really have a cure, (most yet anyways) so the geneticist would just be helping with finding cause of problems and helping find relief, so she most likely will always be ill, but it's about taking a hold on here life and not letting chronic illnesses take over her life
Sounds like a great Doctor. It's nice when a Doctor doesn't make you feel like your wasting their time and willing to help.
one year today! so happy to see the improvement in your alergies thanks to IVIG!
I am amazed with the people you have around you. They are truly life savers, very knowledgeable and panic free. Cu-dos to your friends, way to go! When you have a reaction it is quite scary but your friends made it look so easy and uneventful.
Sorry about the reaction! I'm so glad you made it through all that mess. Hope it was great otherwise, Jaquie. This too shall pass! ❤💜
I am so glad I watched today, I may be making a trip to Gainesville Florida to see this geneticist. I have one in another state that diagnosed me with H-EDS but that is all he does is diagnosis. I already travel to two other states to see a Chiari, and Dysautonomic specialist so what's one more state!
I'm glad you had friends who knew what to do when you needed them, and that you found a doctor that takes a (more) holistic approach to your medical situation.
Wow this geneticist sounds amazing! Cant wait to hear the results, hopefully you can get some answers!
oh many allergic reactions are no fun! but it's great that you've been able to take a handle on your health!
Sounds like an amazing doctor! Unfortunately there isn't any doctors in Nebraska that can help me with my eds :( I got diagnosed by an out of state doctor but I can't go to see him! Hopefully I can find a doctor soon!
I am so sorry about your reaction today!! I would be interested in a list of Drs everyone is seeing or would recommend for EDS, Dysautonomia, Chiari, and all of these awful conditions! I'm not getting any help from any of the Drs that I have been seeing! My Neurologist basically told me to my face that she doesn't know what to do or how to help me. The cardiologist I have seen basically blew me off. The only, kind of, help I'm getting is from my GI Dr and he told me to start running and increase the salt in my diet. Running is completely out of the question! My PT said that is definitely not going to be good for me since he can barely keep my body together for 2-3 days without K Tape!
I am so thankful that I found your vlog Jaquie! I have learned so much from your journey!!
Lindsay Mitchell I have very similar problems getting doctors that can help me or even want to my primary is good but doesn't quite know how best to help me my neurologist is great at diagnosis but kinda crummy at helping me treat what he has diagnosed
judgebythefruit I don't think that I will even get a chance to even direct my Neurologist. She didn't even have me make a follow up appointment. She wants me to have a Paraneoplastic panel as well as a Voltage gated potassium channel, that is he last ditch effort to help me. My insurance doesn't help cover so my husband and I have a very hard time dishing out that kind of money to just throw at a guess that she is just making.
Your dad & the dogs in this video are so cute! My dad is the same way with my sister's dog!
Glad geneticist has a holistic view. Was just wondering about that in your story. Defining so many different chronic syndromes and disorders can really fragment care, and seems to diminish the chances of uncovering the connections between them, and for curing, not just managing them. Neuroimmunological makes sense to me... ps. Your positive attitude and practice of gratitude help remind me to practice same. Thanks, Jacquie. So glad you are vlogging. Another ps.-- Your allergic reactions SEEM to take place when you are exposed to roads, i.e. gas fumes, petroleum products in general. Have you investigated that?
Where is the vest Harlow is wearing today from?
when you said "still alive, still breathing" it made me think of that song "i'm still alive but i'm barely breathing" :(
Curious if the infusion of the lacated ringers could be causing your allergic reactions? Just a thought. I know that lactated ringers can cause allergic reactions, hives, itching, swelling of the eyes, face, or throat, coughing, sneezing, and difficult breathing. Again, just a thought. I'm not a doctor but thought I'd mention it because it may not be something you've thought about. anyhow, hope you're having a good day.
I live in Gainesville!!
Great friends and great vlog
what were your symptoms before and ow were you diagnosed with P.O.T.S rn I'm struggling to get a diagnosis
Oh my I hope your ok
how old are You? and how old is your dad? not to sound rude but have any of your doctor's said that these illnesses are because your fathers age? I've heard its why we at a certain age shouldn't have kids ....
tiffgarcia she has said before that her parents may be genetic carriers for some of her illnesses but she may also have a first generation mutation. They is basically no chance that the age of either of her parent have had any impact on her health
It nice
Had a horrible thought: what if the G'ville doc completely cures you? Harlow wouldn't be a SD anymore! :'(
Glen Hunt well she is chronically ill (with even other things completely different than what a geneticist covers) and chronic illnesses don't really have a cure, (most yet anyways) so the geneticist would just be helping with finding cause of problems and helping find relief, so she most likely will always be ill, but it's about taking a hold on here life and not letting chronic illnesses take over her life
I know. It was was a CI joke. :) I'm chronically ill, myself.
ah ok haha😂❤i'm a little bad at picking up jokes
Bruh clean ur camera