I need to take a moment to say how awesome my tech was! He settled my nerves and was incredibly kind/funny. All three of us shared dog photos before the test. It turns out that both he and Amber have boxers, and they are both named Duke! How neat (:
Jaquie, I need to know if your tech actually used Q- tips? Or what name this test is called? I told my neurosurgeon about it and they havent heard of this type of nerve conduction test. His PA said she would hav to research it. Thank you in advance, I love your videos! All the best to you! Lily 🌸
I"m always so relieved to hear when you find something that helps you, even something as simple as getting a new bed. Every improvement helps, and we are all here for you and cheering for you as you battle these chronic illnesses. You really are a warrior, and we are so proud of you!
I just wanted to say thank you Jaquie. I came across your channel a few months ago while researching chronic pain. I am 40 years old and have been dealing with a number of various problems over the years. I have always found it difficult to be my own advocate and that is ironic because was an x-ray technologist (until recently when an injury from a patient falling on me caused a decline in my condition and now I don't know what to do) and was always telling my patients to advocate for themselves. When I found your channel and watched the video about your chronic conditions it got me thinking about my own problems. I went to my primary care physician and asked her to "just humor me" she actually (she is amazing) did and I have since been diagnosed with Ehlers-Danlos Hypermobile, fibromyalgia, central pain syndrome and chronic pain syndrome. Thank you for helping me get here.
Hello Jaquie, I want to thank you for doing this for people like my daughter that suffer with chronic conditions. My daughter is very very ill with POTS/DYSAUTONOMIA and severe gastroparesis since she was 12yrs old and now she is 18 but it took till last year for them to diagnose her correctly and still there are some things they can't explain. She just passed out from pain tonight and I was watching your vlogs. We live in Brevard county FL and we have had no luck with doctors helping or knowing about her condition. I was the one who researched enough to find out what to ask doctors to do like referrals to cardiologist and so forth. I've taken her out of state for treatment which honestly were costly but not even close to the care you've gotten. Right now I'm looking for doctors like your GI doctor that knows enough about gastroparesis so that we can help her at home and not go through being in the ER so much just for hydration but if she gets the severe abdominal pain they will let her suffer there in pain. If there is any way you can share the doctors name I would so appreciate it. I need to help my daughter she is suffering and we do not have specialists here that believe in POTS period or they know but because its complicated they do not want to deal with it and we get passed on from one doctor to another. God bless you and we will keep following you and praying for you and your family. You are a beautiful young women and a beautiful soul!!! Thank you thank you thank you!
I remember having an EMG test. It's so nice, when the doctor jabbs needles into my muscles, and tells me I need to remain calm, because if I tense up, it'll make the test inaccurate... It friggin' hurt like hell!!!
Glad your test didn't hurt! I had a nerve conduction test many years ago where they stuck pins into my paralyzed leg and turned each in 4 different directions once it was in---SOOOOO painful! I like the q-tip idea much better!
My husband has had the nerve test with the needles and it was miserable for him. He hated every second of it. You'd think the one without all of the needles would be cheaper! I mean a qtip and a spongue, surely can't be more expensive then all the needles they stick into you. Insurance is stupid sometimes. Hope your test comes back fine and you can get some answers. Have an awesome day. Xo
I'm very glad that you aren't allergic to Vancomycin. I am, but i sometimes get a few doses with IV benadryl before and after. I've had an EMG one time and it was HORRIBLE! Some nerves in my body are not sensitive at all, but other's are hyper sensitive. So i went CRAZY screaming for him to stop. I will not do that EVER AGAIN! I'm praying for you and your family. I LOVE you guy's.
💪 YAY for that few hours of freedom! I think its wonderful that even though you know what could potentially happen you still try to eat or drink. Fortunately its been years but those needle test... NO WAY... i'm hyper sensitive so it's extremely painful. You got this, getting rid of MRSA!
Oh my gosh, I’m so glad for you that you didn’t have to do the needle one. When I went in for my EMG, it hurt so bad. Beyond that, I just cried, like the electricity made me cry. It hurt, but with the pain I live with, I rarely cry from pain. It was so weird. The technician wouldn’t finish it because of my crying, and I was grateful for that! My neurologist promised never to send me for another EMG 🙂
Hi Jaquie, I could be so wrong about this? It seems quite special to me that such an articulate intelligent beautiful young lady would represent her journey in such a heart-touching way.
I had neck surgery for the pinched nerves. My spine is a mess. I also have the tingling with shooting pains in my feet. My thumb has been numb for 2 years. I keep a splint on it because it just feels better. I have had back surgery too for spinal stenosis and the pinched nerves. If you have problems with numbness and tingling in your upper extremities, hands and fingers my doctor told me it was from my neck. I love your videos. I have cervical myelopathy which has caused damage to my nerves. I use to be able to walk really but now I stagger when I walk and I use a rolling walker when I go out. People just do not understand how these problems cause a person to have no strength and walking is a struggle. I have a new normal now. Gabapentin helps the burning nerve pain but it zaps my energy and makes me so sleepy. I wish you a speedy recovery from your MRSA issue. I love your videos and I follow you. You are such an inspiration.
I stumbled onto your channel a couple of weeks ago, and it was really the best thing I did. I have a number of chronic illnesses and it's so refreshing to find a youtuber who is willing and happy for others to see how hard it is to live with illness sometimes. I have so many questions for you, but the two I really want to know are: does Harlow ever get hot/cold in her service vest? And how did you get diagnosed with narcolepsy? If you've already answered these in other videos, please direct me. I've not been able to watch all of your uploads yet. All the best, and you're in my thoughts.
It is funny how decisions and anti biotics work. And how every body and bacteria is unique. I was on Keflex, Cephalexin, Clendomyicin and all sorts off and on for two years (every couple of months) for community acquired mrsa. I finally was admitted to a hospital because it went in to my eye and I have many issues already (iritis, optic neuritis etc. etc.). So course they were on top of it in less than 48 hours. I got i.v. Rosefin. And for me it kicked it out of my body and was finally 100 percent free of that infection! It is tricky, but you got this girl. Wishing you well.
Katie Johnson Ahhh I'm allergic to Cephalasporins. Keflex and Cephalexin would've NOT mixed well with me. 😬Just seeing those names makes me cringe. It's so scary it spread to your eye, but I'm very glad the hospital was on top of things and got what worked! Super glad you're infection free now.
Skyler Gray Indeed! I am allergic to Penniccilin and Sulfa, so Keflex sometimes is not recommended ... for me though ... so far it has been safe. I know how tricky anti biotics can be. Sorry to hear it. :(
Katie Johnson Both my parents are allergic to Penicillin big time, so as a kid they were very cautious about using Amoxicillin with me when I had bad infections, but never put me on straight Penicillin. So a couple years ago... maybe 18 months I had a MAJOR injection in my lymph node on the side of my neck. Stayed in the hospital for 5 days of IV antibiotics. First words out of the Dr's mouth were "we're starting you on Penicillin." (Actually they were "I've never seen a lymph node that big in my eleven years of emergency medicine." 😂) I was terrified I was gonna react, and I was watched super closely, but I didn't. So weird how some things can affect and you so strongly and some don't at all.. and then the ones you expect to don't. And don't get get me started on the ones that USED to not affect you... and all of a sudden... bam.
Skyler Gray That is super crazy girl! Glad it all worked out for you. I was prone to infection as a kid, so I took a lot of Amoxicillin. When I was 17 I was in OK. City, far from home, for a horse show. I took my 1st dose of Amoxicillin and was fine, took my 2nd dose and had bone chill cold shaking and night sweats. My mom said "you look terrible, take a dose of your medicine", not knowing, of course what was going on. 30 seconds after dose # 3 my throat closed more than 50 % and I was rushed to Childrens hospital 🙁 Crazy how a medication can be a good friend, then just bite you in the butt lol .... thankfully Childrens is amazing and I was ok. It is good to be over cautious. For sure.
Tens units help my muscle spasms but don’t help my joint pain. I get muscle spasms in my lower back from anular tears in S2-L5 from when I was hit by a car when walking. When the muscle starts spasming a lot it feels like super intense pinching inside and drives me absolutely crazy. I tried it on my hip for the pain from subluxing(that’s one of the joints I can sublux at will/just does it when running or climbing stairs or walking a lot) but it doesn’t help that really.
I’ve had a nerve study... That wasn’t pleasant for me when they sent the impulses... Plus they stuck me with 8 needles! Good luck with the IV antibiotics...
Right? It is crazy. The machine he was using looked pretty intricate (it was not fully on camera) so maybe that is the expensive part. I'm honestly not sure though.
My dad had endocarditis and one of the antibiotics he had to take to treat it was one he was allergic to, they did a test in the hospital to see if he could tolerate it and he didn't have a reaction, but he had to have it on a continuous drip because if he had a large dose he could get another reaction. The nurse said he could only be disconnected from his pump for 5 minutes to take a shower so every shower was a huge ordeal and everything had to be planned around it and he had to be on the drug for 3 months. I am just glad you can take some different drugs to help you, even if they do have side effects.
Those are strong antibiotics. Good luck with treatment! Yay for going back to bed after the Dr and woo hoo your new bed is making you feel so wonderful. I always smile when I see Amber in the video because she just is amazing!
Jaquie, I'm stunned by all the good you do for all of us warriors. I have mast cell with angioedema and anaphylaxis, I have Autoimmune Progesterone Anaphylaxis (26th documented case worldwide), and h-EDS, Dysautonomia/POTS, Primary Immunodeficiency, and gastroparesis (and they suspect Narcolepsy). As you can imagine I relate to you very well. I have to travel to 3 states so I can see a specialist in everything. Everything seems like you put out one fire only to see something else go ablaze. I have a question, and I really hope you haven't answered this somewhere else - if you have, I'm sorry to ask again. After the max of antihistamines (H1/H2) and such, my MCAS specialist tried high dose steroids and then Xolair, but nothing stopped the mast cell mania. He finally stuck me on Cyclosporine, and anti rejection transplant med, to try to shut down my immune system. I got down from 32mg to 10mg Medrol on it, which was great, but that's the lowest I can get to bc I'm anaphylaxing again. Has a specialist of yours ever recommended a drug like Cyclosporine, CellCept, Gleevec, etc, and if not, why not? I do not believe it is wise to further crash the immune system of someone with Primary Immunodeficiency like you and I have. Thank you SO MUCH if you answer. Michelle
I need a NCT done, was put on blood thinners so I have too wait. didn’t know there is another way to do it. Thanks to 24 years military service (hubby) we have pretty good insurance so I’m going to ask about that.
What probiotics do you use? I need to start using them and it would be nice to know a good kind. Thank you for sharing all of your adventures with us! ❤️
I hated the needles test. That looked so much better. Lol your mini fridge brought back memories. My late husband had 2 rounds pf IV antibiotics. I had vegetable drawer full of IV bags and protable ballon bags. Then the drawer in the dresser, yep had on of them to.
LIFTING YOU IN PRAYER JAQUIE HOPE YOU GET THAT MRSA I WAS IN THE HOSPITAL FOR IT 7 OR 10 DAYS IT WAS MY LUNGS DUE TO MY LIFE SUPPORT IN MY THROAT I DON'T KNOW THE MEDICAL NAME OH!!! GOSH I HAD A IMG NERVE TEST IT HAD NEEDLES OCH!!! I BLEED A LITTLE BIT IN MY LOWER LEGS HOPE YOU WELLNESS BLESSINGS FROM DANIELLE AGAJANIAN
Thank you for sharing your story, Jaquie. You've touched me in ways I cannot express. You've made me feel... more legitimate than I ever have. I don't have the extensive medical history you do, but I do have my own. Is there a way to connect with you off social media? A PO Box or address to send you letters/small things? I'd also like to know where you got your medical alert bracelet. Thanks!
J Brooke ...the alert bracelet is by RoadID.com I love mine. I used to store my history in my phone but realized if I'm in a car accident my phone will probably not be anywhere I can reach it after bouncing around. I love it because I can store my entire medical history on my website account, which is huge for me. I don't have to remember my med list, they can just pull it up. They have sales frequently. They have a variety of types of bracelets. Can you tell I love mine? Lol. Btw, if you have a large medical history, get two of the larger faceplates, or a couple custom badges (they're the skinny ones). Mix and match. I have two large faceplates, plus three custom badges and one badge with the medical alert symbol.
Glad that ur nerve conduction test went well. I've had several EMG and they aren't very pleasant. Wen ever I have MRSA I have to be in the hospital for weeks on end. last time I had MRSA due compromised immune system I was one both vancomycin and Gentamicin. Heads up the The vancomycin can make you feel REALLY itchy all over your body. But sometimes Benadryl can ease that.Sending you Loads of hugs from over here in the UK💜🇬🇧🐶
That minifridge idea is helpful :) Thinking I should get one of those in my room so that when I'm hungry at night, I am much less likely to risk waking my dad up.
Do you know the name for that study vs the other ones you have had? The last one I had was like torture (not kidding) and I've been avoiding having another one that I need.
MRSA is Staph but it's Methicillin resistant, you could have another strain of Staph that you need the other medication for but I would assume that the medication for the MRSA would kill both so you might have something else.
I don't know why, but when you went through your medical supplies delivery I kinda thought 'You should work in communications / marketing for a big medical company' ... because you changed your course of studies and because you really explain all medical things that are going on in your life so well! Just a random thought 😅
The neurologist I had was supposed to do a nerve test on me, but after doing research on the tests, what he did was not a nerve test. I don't know what he was doing, but I'm glad now that the old geezer fired me as a patient.
There's a much better unit that's a tens type of device. It's by Avazzia- targeted current delivery that has proven wave forms for best therapies. I was a sales person at one time (not anymore) and got to use the device on my bad knee and shoulder. Absolutely amazing! Look into it!
I have pins and needles in hands and feet due to Small Fiber neuropathy. It is common in EDS patients. Normal nerve conduction test so a skin biopsy is needed for diagnosis.
I have not been evaluated for that as I know you need the skin punch biopsy, but so far my team does not think I have it. I did get a skin punch biopsy for genetic testing though!
I'm not sure what antibiotic she was on, but my mother had to use a drug that damaged her hearing. They knew it was going to do this, but there wasn't a choice. It was take the drug and go deaf, but live, or don't take the drug and die, in which case the ability to hear wouldn't really matter.
Bloody hell, with those infections im suprised yr walking around,yr so tough, i love yr new chair too,its really cool 😎. Yr such an amazing woman and im really glad i joined yr channel 😘
Omg my spine doctor wants me to get an EMG and I originally scheduled it and then got too anxious and cancelled. I do not want needles poking my nerves!!!!
Crazy4Creatures I use a yoga ball... for sitting and excersizing... also basic leg lifts or hip rotations or even small little weights... biggest thing is knowing your body and yur limits... dont push it to the point of more pain... i have chronic back pain so my docs have always said strength excersizes are the best...
Water aerobics in a warm pool. Great for stretching, aerobically and weight training. And bonus no sore muscles. Gentle on your joints but it is exercise you can do at your own pace too.
Your videos are always helpful! My prep paperwork states, “ no lotion, perfume, and loose clothing “. So I’m going to assume it will be done with needles.
Nerdy comment here, but i think it's too ironic that you and Mary are basically taking the same drugs at the same time. She's on Vancomycin and ceftazadime, which is the same class and generation of antibiotic as ceftriaxone! Chronic illness warrior twins!
Nerve conduction studies suck ass I have MS and it made my MS related nerve pain 100 times worse they upped my pain meds from 3 times a day to one every four hours
Be careful taking so many antibiotics. A complication of antibiotics can be CDIFF. Have you ever had CDIFF? I got CDIFF in 2016. I got severe diarrhea. I couldn't leave the house for anything but very short periods of time and I could not work for 3 months.
I need a NCT done, was put on blood thinners so I have too wait. didn’t know there is another way to do it. Thanks to 24 years military service (hubby) we have pretty good insurance so I’m going to ask about that.
I need to take a moment to say how awesome my tech was! He settled my nerves and was incredibly kind/funny. All three of us shared dog photos before the test. It turns out that both he and Amber have boxers, and they are both named Duke! How neat (:
Chronically Jaquie that is awesome. What a wonderful guy
Good luck with the treatments! I know they are going to be harsh. But you're strong! keep it up and keep us posted. Feel better
Chronically Jaquie he was very nice don't find to many that are that nice 😊😊
Jaquie, I need to know if your tech actually used Q- tips? Or what name this test is called? I told my neurosurgeon about it and they havent heard of this type of nerve conduction test. His PA said she would hav to research it. Thank you in advance, I love your videos! All the best to you! Lily 🌸
I"m always so relieved to hear when you find something that helps you, even something as simple as getting a new bed. Every improvement helps, and we are all here for you and cheering for you as you battle these chronic illnesses. You really are a warrior, and we are so proud of you!
Thank you for saving my life, stopping self harm and stay more positive. Thank you more than I could ever express.
Chelsea Glitterlizard WE ALL LOVE YOU HERE!❤️💚👍
So happy to hear you’re doing better! Sending hugs.
I just wanted to say thank you Jaquie. I came across your channel a few months ago while researching chronic pain. I am 40 years old and have been dealing with a number of various problems over the years. I have always found it difficult to be my own advocate and that is ironic because was an x-ray technologist (until recently when an injury from a patient falling on me caused a decline in my condition and now I don't know what to do) and was always telling my patients to advocate for themselves. When I found your channel and watched the video about your chronic conditions it got me thinking about my own problems. I went to my primary care physician and asked her to "just humor me" she actually (she is amazing) did and I have since been diagnosed with Ehlers-Danlos Hypermobile, fibromyalgia, central pain syndrome and chronic pain syndrome. Thank you for helping me get here.
Hello Jaquie, I want to thank you for doing this for people like my daughter that suffer with chronic conditions. My daughter is very very ill with POTS/DYSAUTONOMIA and severe gastroparesis since she was 12yrs old and now she is 18 but it took till last year for them to diagnose her correctly and still there are some things they can't explain. She just passed out from pain tonight and I was watching your vlogs. We live in Brevard county FL and we have had no luck with doctors helping or knowing about her condition. I was the one who researched enough to find out what to ask doctors to do like referrals to cardiologist and so forth. I've taken her out of state for treatment which honestly were costly but not even close to the care you've gotten. Right now I'm looking for doctors like your GI doctor that knows enough about gastroparesis so that we can help her at home and not go through being in the ER so much just for hydration but if she gets the severe abdominal pain they will let her suffer there in pain. If there is any way you can share the doctors name I would so appreciate it. I need to help my daughter she is suffering and we do not have specialists here that believe in POTS period or they know but because its complicated they do not want to deal with it and we get passed on from one doctor to another. God bless you and we will keep following you and praying for you and your family. You are a beautiful young women and a beautiful soul!!! Thank you thank you thank you!
I remember having an EMG test. It's so nice, when the doctor jabbs needles into my muscles, and tells me I need to remain calm, because if I tense up, it'll make the test inaccurate...
It friggin' hurt like hell!!!
Glad your test didn't hurt! I had a nerve conduction test many years ago where they stuck pins into my paralyzed leg and turned each in 4 different directions once it was in---SOOOOO painful! I like the q-tip idea much better!
My husband has had the nerve test with the needles and it was miserable for him. He hated every second of it. You'd think the one without all of the needles would be cheaper! I mean a qtip and a spongue, surely can't be more expensive then all the needles they stick into you. Insurance is stupid sometimes.
Hope your test comes back fine and you can get some answers. Have an awesome day. Xo
I'm very glad that you aren't allergic to Vancomycin. I am, but i sometimes get a few doses with IV benadryl before and after. I've had an EMG one time and it was HORRIBLE! Some nerves in my body are not sensitive at all, but other's are hyper sensitive. So i went CRAZY screaming for him to stop. I will not do that EVER AGAIN! I'm praying for you and your family. I LOVE you guy's.
💪 YAY for that few hours of freedom! I think its wonderful that even though you know what could potentially happen you still try to eat or drink. Fortunately its been years but those needle test... NO WAY... i'm hyper sensitive so it's extremely painful. You got this, getting rid of MRSA!
Oh my gosh, I’m so glad for you that you didn’t have to do the needle one. When I went in for my EMG, it hurt so bad. Beyond that, I just cried, like the electricity made me cry. It hurt, but with the pain I live with, I rarely cry from pain. It was so weird. The technician wouldn’t finish it because of my crying, and I was grateful for that! My neurologist promised never to send me for another EMG 🙂
Hi Jaquie, I could be so wrong about this? It seems quite special to me that such an articulate intelligent beautiful young lady would represent her journey in such a heart-touching way.
I had neck surgery for the pinched nerves. My spine is a mess. I also have the tingling with shooting pains in my feet. My thumb has been numb for 2 years. I keep a splint on it because it just feels better. I have had back surgery too for spinal stenosis and the pinched nerves. If you have problems with numbness and tingling in your upper extremities, hands and fingers my doctor told me it was from my neck. I love your videos. I have cervical myelopathy which has caused damage to my nerves. I use to be able to walk really but now I stagger when I walk and I use a rolling walker when I go out. People just do not understand how these problems cause a person to have no strength and walking is a struggle. I have a new normal now. Gabapentin helps the burning nerve pain but it zaps my energy and makes me so sleepy. I wish you a speedy recovery from your MRSA issue. I love your videos and I follow you. You are such an inspiration.
I stumbled onto your channel a couple of weeks ago, and it was really the best thing I did. I have a number of chronic illnesses and it's so refreshing to find a youtuber who is willing and happy for others to see how hard it is to live with illness sometimes. I have so many questions for you, but the two I really want to know are: does Harlow ever get hot/cold in her service vest? And how did you get diagnosed with narcolepsy? If you've already answered these in other videos, please direct me. I've not been able to watch all of your uploads yet. All the best, and you're in my thoughts.
It is funny how decisions and anti biotics work. And how every body and bacteria is unique. I was on Keflex, Cephalexin, Clendomyicin and all sorts off and on for two years (every couple of months) for community acquired mrsa. I finally was admitted to a hospital because it went in to my eye and I have many issues already (iritis, optic neuritis etc. etc.). So course they were on top of it in less than 48 hours. I got i.v. Rosefin. And for me it kicked it out of my body and was finally 100 percent free of that infection! It is tricky, but you got this girl. Wishing you well.
Katie Johnson Ahhh I'm allergic to Cephalasporins. Keflex and Cephalexin would've NOT mixed well with me. 😬Just seeing those names makes me cringe.
It's so scary it spread to your eye, but I'm very glad the hospital was on top of things and got what worked! Super glad you're infection free now.
Skyler Gray Indeed! I am allergic to Penniccilin and Sulfa, so Keflex sometimes is not recommended ... for me though ... so far it has been safe. I know how tricky anti biotics can be. Sorry to hear it. :(
Katie Johnson Both my parents are allergic to Penicillin big time, so as a kid they were very cautious about using Amoxicillin with me when I had bad infections, but never put me on straight Penicillin. So a couple years ago... maybe 18 months I had a MAJOR injection in my lymph node on the side of my neck. Stayed in the hospital for 5 days of IV antibiotics. First words out of the Dr's mouth were "we're starting you on Penicillin." (Actually they were "I've never seen a lymph node that big in my eleven years of emergency medicine." 😂) I was terrified I was gonna react, and I was watched super closely, but I didn't. So weird how some things can affect and you so strongly and some don't at all.. and then the ones you expect to don't. And don't get get me started on the ones that USED to not affect you... and all of a sudden... bam.
Skyler Gray That is super crazy girl! Glad it all worked out for you. I was prone to infection as a kid, so I took a lot of Amoxicillin. When I was 17 I was in OK. City, far from home, for a horse show. I took my 1st dose of Amoxicillin and was fine, took my 2nd dose and had bone chill cold shaking and night sweats. My mom said "you look terrible, take a dose of your medicine", not knowing, of course what was going on. 30 seconds after dose # 3 my throat closed more than 50 % and I was rushed to Childrens hospital 🙁 Crazy how a medication can be a good friend, then just bite you in the butt lol .... thankfully Childrens is amazing and I was ok. It is good to be over cautious. For sure.
Jaquie, truly special amongst all of us.
Yay!! Daily Jaquie video💜 good luck with the antibiotics!
ive had that nerve conduction study and she said that most people are okay once they get used to it. I wasnt lol
I feel like someone needs to make a remix of "again, I feel it, and again, I feel it" with laughing backtracks 😂
Tens units help my muscle spasms but don’t help my joint pain. I get muscle spasms in my lower back from anular tears in S2-L5 from when I was hit by a car when walking. When the muscle starts spasming a lot it feels like super intense pinching inside and drives me absolutely crazy. I tried it on my hip for the pain from subluxing(that’s one of the joints I can sublux at will/just does it when running or climbing stairs or walking a lot) but it doesn’t help that really.
I’ve had a nerve study... That wasn’t pleasant for me when they sent the impulses... Plus they stuck me with 8 needles! Good luck with the IV antibiotics...
I wish I would’ve had that test...
I did the other type two times, it was not pleasant. This one was much better and the tech was awesome!
Chronically Jaquie I cannot believe this is an insurance thing... That is so irritating!
Right? It is crazy. The machine he was using looked pretty intricate (it was not fully on camera) so maybe that is the expensive part. I'm honestly not sure though.
Chronically Jaquie It’s just insurance covering what is less pleasant for money’s sake. Don’t drop that Vancomycin... It’s notorious for smelling bad:
Yay for good techs and new treatments! :) sending love
I have Empi (TENS and NMES). I had a stroke and my arm is really helping the muscles (NMES).
My dad had endocarditis and one of the antibiotics he had to take to treat it was one he was allergic to, they did a test in the hospital to see if he could tolerate it and he didn't have a reaction, but he had to have it on a continuous drip because if he had a large dose he could get another reaction. The nurse said he could only be disconnected from his pump for 5 minutes to take a shower so every shower was a huge ordeal and everything had to be planned around it and he had to be on the drug for 3 months. I am just glad you can take some different drugs to help you, even if they do have side effects.
Those are strong antibiotics. Good luck with treatment! Yay for going back to bed after the Dr and woo hoo your new bed is making you feel so wonderful. I always smile when I see Amber in the video because she just is amazing!
Jaquie, I'm stunned by all the good you do for all of us warriors. I have mast cell with angioedema and anaphylaxis, I have Autoimmune Progesterone Anaphylaxis (26th documented case worldwide), and h-EDS, Dysautonomia/POTS, Primary Immunodeficiency, and gastroparesis (and they suspect Narcolepsy). As you can imagine I relate to you very well. I have to travel to 3 states so I can see a specialist in everything. Everything seems like you put out one fire only to see something else go ablaze.
I have a question, and I really hope you haven't answered this somewhere else - if you have, I'm sorry to ask again.
After the max of antihistamines (H1/H2) and such, my MCAS specialist tried high dose steroids and then Xolair, but nothing stopped the mast cell mania. He finally stuck me on Cyclosporine, and anti rejection transplant med, to try to shut down my immune system. I got down from 32mg to 10mg Medrol on it, which was great, but that's the lowest I can get to bc I'm anaphylaxing again.
Has a specialist of yours ever recommended a drug like Cyclosporine, CellCept, Gleevec, etc, and if not, why not? I do not believe it is wise to further crash the immune system of someone with Primary Immunodeficiency like you and I have.
Thank you SO MUCH if you answer.
Michelle
I need a NCT done, was put on blood thinners so I have too wait. didn’t know there is another way to do it. Thanks to 24 years military service (hubby) we have pretty good insurance so I’m going to ask about that.
So happy the new bed was of some relief that's great to hear Jacquie.. Xoxo
I hear ya Jaquie, I too have had the needles, this procedure seems so much relaxing....
What probiotics do you use? I need to start using them and it would be nice to know a good kind. Thank you for sharing all of your adventures with us! ❤️
I love how chill and nice the tech was!:)
I hated the needles test. That looked so much better. Lol your mini fridge brought back memories. My late husband had 2 rounds pf IV antibiotics. I had vegetable drawer full of IV bags and protable ballon bags. Then the drawer in the dresser, yep had on of them to.
LIFTING YOU IN PRAYER JAQUIE HOPE YOU GET THAT MRSA I WAS IN THE HOSPITAL FOR IT 7 OR 10 DAYS IT WAS MY LUNGS DUE TO MY LIFE SUPPORT IN MY THROAT I DON'T KNOW THE MEDICAL NAME OH!!! GOSH I HAD A IMG NERVE TEST IT HAD NEEDLES OCH!!! I BLEED A LITTLE BIT IN MY LOWER LEGS HOPE YOU WELLNESS BLESSINGS FROM DANIELLE AGAJANIAN
So glad you had a good experience plus gave us ideas on my dad's issues will talk to Dr. Glad the bed is awesome
I knew you were going to love your new bed. I'm hoping you will rest much better and not toss around during the night.
Thank you for sharing your story, Jaquie. You've touched me in ways I cannot express. You've made me feel... more legitimate than I ever have. I don't have the extensive medical history you do, but I do have my own. Is there a way to connect with you off social media? A PO Box or address to send you letters/small things? I'd also like to know where you got your medical alert bracelet. Thanks!
J Brooke ...the alert bracelet is by RoadID.com I love mine. I used to store my history in my phone but realized if I'm in a car accident my phone will probably not be anywhere I can reach it after bouncing around. I love it because I can store my entire medical history on my website account, which is huge for me. I don't have to remember my med list, they can just pull it up. They have sales frequently. They have a variety of types of bracelets. Can you tell I love mine? Lol. Btw, if you have a large medical history, get two of the larger faceplates, or a couple custom badges (they're the skinny ones). Mix and match. I have two large faceplates, plus three custom badges and one badge with the medical alert symbol.
Thank you!
Glad that ur nerve conduction test went well. I've had several EMG and they aren't very pleasant. Wen ever I have MRSA I have to be in the hospital for weeks on end. last time I had MRSA due compromised immune system I was one both vancomycin and Gentamicin. Heads up the The vancomycin can make you feel REALLY itchy all over your body. But sometimes Benadryl can ease that.Sending you Loads of hugs from over here in the UK💜🇬🇧🐶
That minifridge idea is helpful :) Thinking I should get one of those in my room so that when I'm hungry at night, I am much less likely to risk waking my dad up.
Do you know the name for that study vs the other ones you have had? The last one I had was like torture (not kidding) and I've been avoiding having another one that I need.
MRSA is Staph but it's Methicillin resistant, you could have another strain of Staph that you need the other medication for but I would assume that the medication for the MRSA would kill both so you might have something else.
I don't know why, but when you went through your medical supplies delivery I kinda thought 'You should work in communications / marketing for a big medical company' ... because you changed your course of studies and because you really explain all medical things that are going on in your life so well!
Just a random thought 😅
Flau
Thanks amber for filming. She did a very good job.
Glad that u sleep soooo well in that bed
The neurologist I had was supposed to do a nerve test on me, but after doing research on the tests, what he did was not a nerve test. I don't know what he was doing, but I'm glad now that the old geezer fired me as a patient.
There's a much better unit that's a tens type of device. It's by Avazzia- targeted current delivery that has proven wave forms for best therapies. I was a sales person at one time (not anymore) and got to use the device on my bad knee and shoulder. Absolutely amazing! Look into it!
Perfect, you answered my question about the 3rd antibiotic! :)
you’re so strong. i look up to you. i have gastroparesis too
I have pins and needles in hands and feet due to Small Fiber neuropathy. It is common in EDS patients. Normal nerve conduction test so a skin biopsy is needed for diagnosis.
I have not been evaluated for that as I know you need the skin punch biopsy, but so far my team does not think I have it. I did get a skin punch biopsy for genetic testing though!
Chronically Jaquie there not sure if my Dysautonomia is from EDS or SFN, they contribute to my chronic problems. I do not wish it on anyone
I'm not sure what antibiotic she was on, but my mother had to use a drug that damaged her hearing. They knew it was going to do this, but there wasn't a choice. It was take the drug and go deaf, but live, or don't take the drug and die, in which case the ability to hear wouldn't really matter.
Admire you Jaquie ❤
My brother had MRSA when he was 6-7 years old and he needed to go to the hospital and everything it was wild.
I wish we had this test instead of the needle one here, I have had four this year!
My brother just got diagnosed with MERSA
Bloody hell, with those infections im suprised yr walking around,yr so tough, i love yr new chair too,its really cool 😎.
Yr such an amazing woman and im really glad i joined yr channel 😘
Omg my spine doctor wants me to get an EMG and I originally scheduled it and then got too anxious and cancelled. I do not want needles poking my nerves!!!!
I had that same test done, and learned I have MD
Do you feel it mr. krabs? :thinking:
This literally made me laugh wayyyy too much ;D
Chronically Jaquie im honored :)
Oh man!! I'm asking for THAT the next time they want to use those big needles on me again!
Ben Perez even BIG needles 😨 I would be so scared
I just had an EMG with the shock and needles last week! It was so weird.
I love you so much!!!!
Get well soon
Your doctors tag sticking out of his shirt had my OCD screaming!!
How is judd doing?
Other people like watching makeup or clothes hauls, yet here I am watching your IV stuff haul 😅😅
Vancomycin: not for penguins.
Amy McRae your comment made me giggle 😊😊
Danielle Johnson 😂👍🏻🚫🐧
I have been on them drugs for MRSA you need to take a probiotic everyday
The nerve conduction study with the needle hurts like a b$&#
Any recommendations on good exercises to do when you have chronic pain?
Crazy4Creatures I use a yoga ball... for sitting and excersizing... also basic leg lifts or hip rotations or even small little weights... biggest thing is knowing your body and yur limits... dont push it to the point of more pain... i have chronic back pain so my docs have always said strength excersizes are the best...
Water aerobics in a warm pool. Great for stretching, aerobically and weight training. And bonus no sore muscles. Gentle on your joints but it is exercise you can do at your own pace too.
NessaTHEMousie thank you
Lolly Lolly I may have to look into this. There are some rec centers and ymcas near me. Thank you so much
.
I have done the needle on my arms and legs. Not the most pleasant experience.
I heard the needle one is hell!!!
I did a nerve study, it wasn't that nice. It felt like needles.
I have to have a nerve conduction test on Tuesday. 😫
I have now done both and while I prefer this one, the other type is not absolutely horrendous. It will hopefully bring you some new information!
Your videos are always helpful! My prep paperwork states, “ no lotion, perfume, and loose clothing “. So I’m going to assume it will be done with needles.
I had a boxer named duke to he was my esa he ended up getting really sick so we put him down
I am scared to take this test..
On nevermind mine wants to do the needle one 😂😂
MRSA is staphylococcus. :)
Be prepared to treat yeast infections.
I suffered really bad injuries and i heard i may burn it out lol
What a nice man! The guy who does the tests at the RNOH in Stanmore, north London, is horrible!
I tagged you in a pic on Instagram! lol
Stay safe I’ve heard there’s a serial killer in Tampa
I have gastroporesis
Nerdy comment here, but i think it's too ironic that you and Mary are basically taking the same drugs at the same time. She's on Vancomycin and ceftazadime, which is the same class and generation of antibiotic as ceftriaxone! Chronic illness warrior twins!
I can't tolerate these nerve studies 😞
Nerve conduction studies suck ass I have MS and it made my MS related nerve pain 100 times worse they upped my pain meds from 3 times a day to one every four hours
You should watch Amy Lee Fisher I think you might like her 🤗🤔☺
Ps. Love your videos 😁
malikate11
Yes I do and she seems like a nice person
EMG with needles = bad!
Be careful taking so many antibiotics. A complication of antibiotics can be CDIFF. Have you ever had CDIFF? I got CDIFF in 2016. I got severe diarrhea. I couldn't leave the house for anything but very short periods of time and I could not work for 3 months.
I need a NCT done, was put on blood thinners so I have too wait. didn’t know there is another way to do it. Thanks to 24 years military service (hubby) we have pretty good insurance so I’m going to ask about that.