Gitelman's syndrome testimonial part 1

Gitleman's Syndrome,salt wasting,Barter's Syndrome,fluid and electrolyte.

[@juliefrench6979]

I was diagnosed with Gitelman's Syndrome in 1994. I was 26 yrs. Old. It has been horrible living with this disorder. I take alot of potassium and magnesium, blood pressure pills ect. I've never met or heard anyone talk about it so I love hearing you talk about it!

[@sylviareed6505]

I'm so glad I can help you or anyone else who might have it. Get it out there so Doctors know without looking it up.

[@hkn_k]

hi Sylvia from Turkey...I was just diagnosed yesterday at 25 after a terrible chest pain and low potassium rate in ky blood. it's a relief to see people around like you talk about this diseases..but it's also make me feel bad that i will never step on a gym salon. take care..and could you make more videos about it..

[@kirstynbeaver4176]

im just now seeing this because im looking for a good video to share to my class with my report because I also have GS and i've been diagnosed since 2009. I still cant find good videos which is so sad. I really appreciate your video.

[@sylviareed6505]

Good luck! Thank you for finding this video informative GS buddy. I hope you find more videos out there!

[@erica764]

Thank you for this. I was diagnosed with gitelmans syndrome when I was 14 years old. (Im now 30) Everyday is a struggle. The pain is something I've just had to get use to. Even when Im on top of my meds I feel terrible. Its also caused problems emotionally. When you said "you're not dying but you feel like you are"✋ I felt that. Its nice knowing Im not alone💙

[@sylviareed6505]

Yes its hard. In your mind your this super motivated individual but yout body just collapses. I'm here for you! I haven't yet got a total grasp on This illness but I'm trying. We all are.

[@samuelmccord984]

I’m 44 was diagnosed 1984-85 God Bless you for sharing I also have ITP.Man the cramps and joint pains are incredible sometimes.Now I know why can’t get enough sleep rest wish there more thing that can help are disorder thank you for sharing .

[@sylviareed6505]

Your very welcome. We must have awareness to get a better understanding. Sometimes I feel like midol works with cramping. It's a muscle relaxer. Any advice you can give would many people would benefit from. Please join the Facebook group in the video. Thanks

[@khrisstinaengel2645]

I was misdiagnosed as barter Syndrome in 1997 but was corrected the same year from one of the top kidney specialist in Canada. I was diagnosed at 20 years old at that time I was in a wheelchair. I have had symptoms since I was I could talk. I was a pale underweight child. I have been complaining of cramping, headaches, stomach pain, pass out, fall asleep in class, constantly had to go pee every 10 minutes, dizziness, chest pain, the list goes on. Doctors said I was calling wolf and didn’t want to go to school and I just had growing pains but never grew and wore the same size of clothing from kindergarten to grade 2. Glad to hear there’s another one of me out there! I was told kids were out of the question. During the pregnancy or child birth I could die. I have so many other Heath conditions because of this. I can’t work. I have tried but can’t hold a job for long because I end up in the hospital because of low potassium. I just got out yesterday from another week. I get frustrated as my the chest pains, heart palpitations are constant, blood pressure dropping low, my dizziness. I just want to be heathy for a change no more weekly pin cushions. My veins are gone after 24 years of weekly or twice a week depending on how low the potassium was on my results. I don’t like to complain but I spend so much time in the hospital I think of it as my own prison except. I’m so calm and everyone is freaking out all the time.

[@sylviareed6505]

So nice to meet you!! Yes it's a crazy illness. Very interesting read.

[@cornrowsjustforme]

May I ask what the top kidney specialist in Canada is? My drs are suspecting Gitleman Syndrome and NutCracker Syndrome (left renal vein compressed)

[@royarachelyazhari]

I have GS. I was diagnosed when pregnant in 2009. It is so so tough. 😢

[@sistertonya8076]

Hello, I'm 42 years old my name Tonya I have been diagnosed with GS ever since I was a kid. I'm so happy I find some that going through what I'm going through

[@ToniAllen]

My husband is a 40 y/o in Oklahoma with it. Diagnosed in 2011. Does really well on his meds, thankfully, but we had a rough time before his diagnosis.

[@sylviareed6505]

Yes. Thankfully we have medication for this. I'm glad your both getting the clarity you need.

[@tiffanyrobin5694]

My brother has been diagnosed with GS. He has always been healthy and then the issues started when he was anout 28-29 years old. He is still awaiting for the genetic testing results but they are treating this a GS.

[@Michelle-rc2xv]

I have GS and there is GS group on FB. It was found in 2015. I get sluggish and family did not understand. TY for your video

[@elazelericka]

I am 31 from the Philippines and I was diagnosed with GS last year. My usual 90/60 went up 180/100 then I was hospitalized and found out I have it.

[@leannep1360]

I started showing signs at 11 but I was diagnosed at age 15, after being in the ICU for 7 days straight. I am now 23 and gitelmans comes with a lot of other health conditions later on down the road unfortunately.

[@emilydesjardins2849]

What other health conditions comes later on that you're aware of?

[@natalieledbetter3319]

I think I have this. I have low potassium high aldosterone and high renin

[@sylviareed6505]

There are many ways to find out. People with Kidney diseases deal with a Nephrologist. I have gone to a urologist too. Get a ekg reading. Check your kinesy for pot holes of potassium lose. Blood work. 24 urine catch from your local doctor. Genetic testing. I have done it all. High Aldosterone is a key indicator. If you urinate a lot. If you feel your eye twitching and bubbles in your ear. Good luck!

[@johnpaulm5151]

Interesting. What about sodium levels? Have they checked your urinary sodium or potassium levels?

[@MsYazumi]

Im crying when i see your video.. Bcoz not all people and also doctor know about this syndrome.. I have to adapt all symptoms n this syndrome.. the pain all by myself. Bcoz its rare n not all people know

[@Melissa0774]

Is it possible to have a form of this disorder that is extremely mild and only comes at certain times when you're stressed and symptoms clear up when you're well rested?

[@imabinthekitchen]

I was finally diagnosed about 2 years ago. I am 45 now and still don't habe a hold of this thing! I am super frustrated.

[@sylviareed6505]

Do you have any questions? Maybe I can help you. Check out the Facebook group that I mention in video.

[@MayasDream]

Thank you! 💖💛💚🥰 Which specialists were most critical for making this diagnosis for you? I believe I may have this. My case started with an 8-day coma after a weekend where I drank coffee for the first time. Prior to that I fainted twice at sports events. I currently have a team of specialists trying to solve my mystery - looking at rare diseases. I’ve been treating myself with round the clock magnesium and electrolytes, tons of water, and salt baths for years but I didn’t see this as connected.

[@helentorres1208]

My daughter has it. And we go through all kinds of up and downs and is a condition that the hole family suffered because we spend a lot of time in the hospitals and our life goes around her.

[@sylviareed6505]

It's def very difficult. I agree it's a challenge to organize. I am only really Just now gripped the reality of this illness. Best of luck to your family. Sounds like your very supportive,which is ideal to getting through Barters and Gitlemans.

[@helentorres1208]

sylvia reed hello 👋🏽 actually I was just watching your video because i was wondering if you have babies and i hope you continue making videos about this, because for a mom like me is like walking to the unknown and I question myself if she has a baby what’s going to happen? What will we be facing. she just turned 18 she was diagnosed in the second grade, but it seems to me like she’s not ready to face her illness

[@sylviareed6505]

@@helentorres1208 I do have children. I birthed 3 boys. They are very healthy. My youngest is 11 months. No major illnesses to date for them. I will continue to make these videos if they help. I didn't know if anyone was finding them useful. It they are then yes,I will start making more with all the education I know about our kidney disease.

[@helentorres1208]

sylvia reed Hi Silvia. Thank you for taking your time. 🙏🏼 please do so I been looking for videos like yours to educate myself so I can understand what my girl is going through. Please make more because you are helping me😘😘😘

[@sylviareed6505]

@@helentorres1208 Yes I will put out a video today when a get a minute. I was just in the hospital with Barters and or gitlemans issue. And gallbladder removal. I have some interesting reveals.

[@jongreen1411]

What about Gene Therapy? Putting normal cells with defective to see if they replicate? Just a thought.

[@sylviareed6505]

I hadn't considered that. It's all in the endocrine and kidneys. If the kidneys were replaced,you would see the same symptoms in the body.

[@jongreen1411]

Your Story sounds so much like my Girlfriends .She has been in hospital for the last week dealing with gitelman and burning in her lower stomach .They have had to give her IV of potassium and magnesium. Her Stomach has been swelling alot.Ive been worried I shared your video with her.

[@sylviareed6505]

@jongreen1411 I'm sorry to hear your girlfriend is going through this. My heart goes out to her. Please check out the Facebook group gitle buddies that help people with Gitelmans syndrome and Barters. She will never be alone to deal with this.

[@jongreen1411]

​@@sylviareed6505 Thank you

[@sylviareed6505]

@@jongreen1411 Welcome

[@crowredeye8066]

I was dxd with this in 2003. I spent about 11 days in hospital. Also had metabolic alkalosis. It was medication induced from lithium. So mine is most likely not genetic but rather an acquired syndrome. The docs said my sodium and potassium channels were blown. So I take potassium chloride liquid rx, but occasionally I can go off it as long as I take several supplements and eat potassium rich foods. It is absolutely awful. The docs said it was pretty obvious that this had been going on for a long time at a cellular level. I'm in much better shape now but it takes work. I really have to stay on top of my symptoms. They did say that my heart was fine, which surprised them. So, I suppose it is more of a Gitelman-like Syndrome, this was what the nephrologists said due to my being 48 before it knocked me down. Occasionally I do have to be rehydrated in the ER, and step up the rx. Thank you for sharing your story.

[@sylviareed6505]

Thank you for sharing. Yes. It can be very traumatic.hang in there my dear. Feel free to contact the group on facebook. Tons of answered solved.

[@aprilgross3913]

I have gitelman’s but do not have it under control. I’ve been in the hospital 38 times. Are you able to control it?

[@sylviareed6505]

No I am not able to control it. I only seem to be getting worse. You really need a good kidney Dr who doubles as a psychologist.lol. check out the Gittle buddie group on Facebook. Lots of answers

[@aprilgross3913]

I live in Kentucky so I go to UK hospital.

[@IBELONGTOJESUS2022]

My fiance has it

[@misskrys213]

Thank you for this - I’m literally going thru my own issues and journey of not knowing what this is fully, and yet your story - this sounds similar to mine.. I’m awaiting results from my 24hr urine collection, bloods.. Did you also incurr high blood pressure as well as low? I had to do a 24hr blood pressure monitor too. Will update on my channel after 13th July 2020.

[@sylviareed6505]

Your welcome. Somebody had to say it.lol.Yes I have high blood pressure too. Makes me seem like I am bi polar but I am not. I get really low or I get really hyper and moody. Not many people can clearly understand this. Join the group and ask as many questions as you can. I'm still learning.

[@elazelericka]

I do have highblood pressure now. :(

[@gabrielesilvacorretoradese2716]

@@sylviareed6505 oi

[@darioayalarocha7621]

I have Gitelman Syndrome at age 15 now I have 28 years old it’s really hard .my potassium is always low

[@sylviareed6505]

What are you doing to address the problem? Potassium chloride? Magnesium oxide? Dead sea salt baths? Talk to a doctor? Please,fill me in.

[@emilydesjardins2849]

@@sylviareed6505 I was diagnosed with Gitelman's back in July of 2018, they actually found it when I was doing genetic testing at my fertility doctor. I am now doing 120mg of Potassium Chloride and 400mg of Magnesium Oxide (which is killing my GI track) daily. I also started Magnesium Chloride soaks for half an hour nightly. Still sitting around 2.8-3.2 for Potassium and 1.2ish for Magnesium. Only symptoms I've ever had is high cravings for salt and pickles, fatigue and some fainting. Never have any problems with heart arrhythmias or anything like that. Such a strange disease. Life now revolves around pill intake and bloodwork. I'm pregnant too so that's a whole added situation.

[@sylviareed6505]

@@emilydesjardins2849 how are you feeling being pregnant going through this. I'm very interested in this bath thing your talking about.

[@emilydesjardins2849]

​@@sylviareed6505 I feel no different from the day I started taking supplements to now. I'm still on the 120mg of Potassium a day and up to 2800mg of Magnesium Glycinate (which I have found is a little easier on my GI track). The nightly Magnesium Chloride soaks have become a hassle and I haven't done them in a while. My numbers are still all over the place with no pattern whatsoever. But I feel completely fine and my growing daughter (due in September) is doing well!

[@dragonfxinvestments3982]

Emily DesJardins 120mg of potassium is not enough to help in my opinion unless u are taking more than one pill throughout the day. I am not diagnosed with gitelman but I’m going see a geneticist next month I have all of these same symptom. I am constantly supplementing tons of potassium, and magnesium, and also eat very salty foods and add pink Himalayan salt to my water or sometimes sea salt. I also have extreme milk cravings at night when I get home. I’m sure my body is craving calcium as well. If 120mg of potassium is not helping then you likely need to get much more from your food or maybe try adding more. The typical healthy person is supposed to be getting 4000-5000mg of potassium per day. Just make sure ur sodium isn’t low when you are taking the potassium

[@lilybea9557]

Hi I’m 17 and I recently was in the hospital for also two weeks. All my electrolytes were extremely low. I was always eating salt and I looked so tired all the time. I struggled with an eating disorder and I was getting help at a treatment place which needed blood drawn. My levels came back so low and I was fused to the er. I spent just one day in the hospital. And then a week later I was having heart palpitations and I was rushed to the er and then rushed to another hospital ASAP because I almost went into cardiac arrest. I spent two weeks and it was horrible. I got tested for everything and they just thought it was just my body struggling with refeeding after struggling with refeeding. But After constant iv they figured out maybe I had GS. I am now on a lot of supplements and potassium holding pills. Im getting genetic labs soon and I’m undiagnosed right now. I’m so traumatized from my hospital experience. My experience is pretty similar to yours and I’m just so nervous on how this will effect my life. I don’t want to have this problem but I’m glad the doctors figured it out. But I’m just nervous if I don’t end up have GS and I’m going to be undiagnosed for the rest of my life.

[@lilybea9557]

I’m on like 40 pills a day and it has so much side effects. I feel uncomfortable all the time and nervous. My body is perfectly healthy I have no other problems but my kidneys just not holding it.

[@lilybea9557]

I’m glad I saw your video especially the comments too. Because there’s so many older people with it. I feel like I’m not alone and to see you guys still alive gives me hope that I’ll be okay. I’m just so traumatized with this right now and dont really know how to deal with it. I miss my old life, even though I fainted and was dizzy and tired so much, I miss not worrying about GS and taking 40 pills a day. But I’m just grateful because Ik some people have way worse illnesses and other things.

[@sylviareed6505]

It sure sounds like you have it. Palpitations and craving salt are pretty key indications.I'm so sorry you had to go through the experience at the ER. Yes, It is traumatic. Then it's all over and it you have to walk around like everything thing is fine when at anytime something could go wrong again. Best thing to say is, know your body so you can be in control. Know the language of the disease so that you can tell doctors in their language what is wrong with you. You got this!

[@militaryhomes6292]

How was your morning sickness when you had your kid(s). I think that I might have it and people in my family. I have a lot of similar systems.

[@arviantotube]

In order to make sure wheter you have it or not you should get your blood pH level tested. If it is high (alkalosis) and your magnesium level is low than its confirmed that you got GS.