I just got Diagnosed with Gittlemans Syndrome and was wondering if there was any other person out there on this site with this disease???

After 40 years of having bouts of irregular heartbeats and hypertension and several emergency admissions to hospital where it was found I had a low potassium level, I was finally referred to a nephrologist. I had a CT scan of my adrenal glands which was OK and a 24 hr collection of my urine which showed abnormalities. I had been on antihypertensive drugs for many years but remained hypertensive. The nephrologist commenced me on Aldactone (Spironolactone) 25mg, Magnesium and a reducing dose of potassium with regular blood tests and I continued my B/P medication. From then on my symptoms disappeared. Now I no longer take any potassium and my blood tests have been normal for over 5 years. The nephrologist explained to me that Gittlemans Syndrome is a genetic disorder which is passed on by both parents and the only way it can be definitely diagnosed is by checking the DNA of both parents and my own. As both my parents were deceased this was not practical but as the symptoms have gone I believe he diagnosed correctly. Gittlemans Syndrome is a problem where potassium is not reabsorbed by the kidneys.

I was diagnoed with GS about two years ago. Its been a little difficult and I had depression for awhile. I am now done with my therapy sessions and doing much better with coping. Its still not easy and my levels have never been managable in the past two years so my meds change constantly and I still get monthly blood work, but I guess thats better than when it was weekly

Also, as a college student its hard sometimes to remeber the negative effects drinking can have on you levels, but I try to be responsible. I wish you the best luck, and although GS is not great there are a lot of things worse in this world.

Does anyone have burning feet sensation? Tight (spasticity) legs and arms aka progressive myelopathy?? Hubby was born with GS and started treatment at 12 years old. He is now 46 with terrible myelopathy--I would LOVE to know if anyone out there suffers from the same or if you know any relation to these symptoms.

I had restless leg type feelings for the first couple months I was put onto my meds after diagnosis. I think it was from going from low potassium to normal potassiuml. It made my muscles feel a little funny. Usually now the only time me legs feel funny is if my levels are low I get crampy legs

I just wanted to inform you that i have had recent genetics testing and it is not passed on by both parents

well let me tell you i have been diagnosed when i was 15 i was part of a study they thought i had an eating disorder and even when i go the hospital they still think the same thing and they never heard of it.
for the person who's husband has the prblem with his arms and legs i can tell you i have the same thing my legs will give out on me .recently along with my heart racing ive been having the tremors and it seems like every year there is a new symptom i dont know about you guys but i take 30 20mg of klor con and 3 400 mg of magoxide and they have me on propranol or inderol something to slow my heart ...im just wondering what the end results will be and what else i can expect because no one seems to have any answers not even the doctors!

I was just diagnosed with it on September 18th, the day before I moved to UCSC. I get the leg cramping if I'm low as well.

I have to take 6 20 meq potassium chloride, 2 400mg magoxide, and Amiloride. My Nephrologist says that Amiloride was one of three things that fix Gitleman's Syndrome. It has no side effects and it's cheapish. I've been feeling a lot better now that I'm on it.

To Tinkerbell: I had the same experience. x.x My doctor thougth I was bullemic. I just laughed and told him that he's nuts for thinking that. The doctors were so convinced that I had an eating disorder. Then he checked my nails and changed his mind because they looked perfectly fine. Appearently you can tell if someone's bullemic by their nails. Plus, I ate like 3x the amount of what anyone eats.

Gitleman's sucks to have, but my kidney doctor knew immediately what to give me and now I barely have any sypmtoms, except that I still get dyhydrated a lot and I eat a lot of salt. (I've had people stare at me during meals here at my college.)

I get the occasional migrane and if I don't take my medicine I'll start having panic attacks and collapse, but I'm pretty good about taking it. I wish I didn't have this. Normal life was so much fun. I wanted to do a serious sport too and now I can't because I can't do too many physically demanding things without passing out.

Oh and staying up late at night is out of the question. I tend to get twitchy, like I am now, and I get headaches. >< Life sucks...

I never had any problen with drinking at college. I've never drunk alcohol and I don't plan too, especially now, so I have one less thing to worry about.

Plus, it's good to have a roommate, cause she's helped me a lot when I do get some symptoms. My roommate knows what to do if I have a bought of low potassium. :3

I hate the bi-weely blood tests...needles hurt a lot. x.x Plus, I've always been afraid of them.

Oh, Jane, Gitleman's Syndrome isn't as bad as Barter's. People who have Barters syndrome do not have a problem with magnesium levels, which is how you can tell the difference between the two. Also, Gitleman's shows up later in a child's life, around teenage years. Also, people with Barters supposedly have a neurological symptom/problem. Try looking at Wikipedia, it surprisingly has some good info. It'll also have links to pages that discuss Gitleman and Barters.

I have Gitleman's. People who have Gitleman's Syndrome can have neurological symptoms/problems when their metabolism is off. It's not a fun disease. My Nephrologist doesn't have me taking the A drug. Why not? Does anyone know?

I'm not a Dr. and can't diagnose you, but I would seek a second opinion. Since there are only about 200,000 of us in the United States and I am only one of them that has never taken or used diurectics. I would recheck the diagnosis. Perhaps even consult a pharmacist about the side effects of the medications you were taking perhaps they were permenant?

i was just diagnosed with gitleman a few days ago. took them over a year to actually diagnose it. i am only 15. I was wondering if anyone had any advice on how to recover fasted when i ur levels get low. I tend to miss alot of school because of this. they doubled all my meds recently and i was also wondering if anyone took magtabs(?)i have taken the cheaper kind and it has done fine i guess but seem the higher dose makes me sick!

Hi I was diagnosed with gs 10 yrs ago prior to that suffered from tigling burning in ankles ans muscle crampsand terrible heart skipping episodes. The heat is hard on me. I too eat alot of salt. I am 52 years old and started having problems with my knees they say one of side effects of gs is chrindalnosis of the knees. Which is calcium deposits. I take amiloride spirionlactone pot and magnesium, We need a support group. Marie

I am afraid of the spironlactone, some cases of breast cancer was found in rats after prolonged use, Marie

i have been on spironlactone for a while now. It has helped me ALOT! idk bout all the studies but dont be to afraid talk to your doctor maybe cause it has helped my levels SOOO much

My daughter was diagnosed about 6 years ago and she has seen different kidney specialists and doctors to no avail. She takes potassium magnesium spironlactone and amyllaride and she is no better now than when she was first diagnosed. She gets cramp palpatations tingling and a general feeling of being permanently unwell, in her words I have forgotten what it feels like to be well. Has anyone any advice or seen a specialist who they think may be able to regulate my daughters condition. One desperate mum, my daughter is 26 years old and a icu childrens nurse and has all on holding her job down.

I have been diganosed in 2004 with Gittlemans. In 2000 I had a seszuir like attack. My blood levels showed a low level of mag. Also I had another eposode in 2005 which a Iv of magnesium. The next day the blood test showes no mag. I take 2 400mg of mag every 8 hours with a 1000 vit d. My nuerologlist of 9 years can find nothing wrong with the eeg is this muscle spams due to low mag or someting else? All family siblings have this. We think it was from the male. No history on mother side.

I forgot to state I take amiloride also