Multiple health issues.

[Reeses]

I was finally diagnosed with a rare kidney disease called Liddles Syndrome after having gone through almost a year of hospitalizations, including one for kidney failure. The doctor that I was seeing had been my doctor since 2005. Since 2015 I was telling him something was wrong. I just didn’t feel right. I was having severe muscle cramps in my feet, calves, ribs and back. I was tired all of the time and I kept getting lightheaded and dizzy. This continued on and in 2017 I began to have no appetite at all. I would throw up brown bile for no reason. My doctor was checking my potassium level and kept telling me it was normal. In February of 2017 I got a really bad viral infection that had me coughing really bad. I would cough so bad I would pass out. One time I passed out and fell in the bathroom. My elbow was all bruised up. My migraines also started getting worse at this time and changed in location and intensity. Finally had an MRI with contrast which showed nothing. Was sent to a neurologist who has tried me on all preventatives that haven’t worked or made my hair fall out. In June 2017 I went to the emergency room for unremitting migraine and the ER doctor actually listened to everything I was saying and did lab work. My potassium came back at 2.2. The doctor said that was dangerously low and admitted me to the hospital. In for 3 days while they gave me IV potassium and magnesium. Needless to say I followed up with my regular doctor and kept getting potassium levels checked. Kept coming back normal according to him. In July 2017 I was expecting someone at my house. When I got up to answer the door I simply passed out and she had to call 911. Ambulance got there my blood pressure was 70/40. Got to ER and they did lab work and low and behold my potassium level was 2.0. In the hospital again for several days with IV and oral potassium and magnesium. Went to my regular doctor for follow up. After 2 weeks of follow up lab work, my potassium started dropping and my doctor didn’t know why. Put me on oral potassium that didn’t bring my levels up. Kept increasing the amount of potassium and put me on magnesium. Levels kept dropping. Also lost 30 pounds in a 2 month period of time that I had to point out. September 2017 potassium getting dangerously low again even with tons of oral potassium. Sent to infusion clinic for IV potassium and fluids. Treatment done, nurse took my blood pressure and it was lower than we started. Doctor told her to hang another bag. Again, blood pressure lower than after 1st bag. Doctor told her to hang another bag. When done, my blood pressure was dangerously low. Taken down to ER to be evaluated. Was admitted and transferred by ambulance to their other hospital. By the time I got there my blood pressure was extremely low and my potassium had spiked. I was in full blown kidney failure. The nurses called a rapid response which is basically a code. Finally was seen by a nephrologist who couldn’t figure out why my kidneys failed or why my body was not maintaining my potassium. Was released after 8 days with 40 pounds of water weight on me because of all the fluids pumped into me. Arms and hands all bruised from them trying to find a good vein for an IV. Continued follow up visits with doctor who just kept increasing my potassium and magnesium and put me on a different blood pressure medication which kept my blood pressure on the higher side which I didn’t like. Still felt awful and having heart palpitations. Finally decided to schedule an appointment with a new doctor with a different hospital group. Saw him in February 2018. He ordered a bunch of lab work and urinalysis that had to be done at 6 a.m. had it done and by 11 that same morning the doctor called me and told me to go to the emergency room. Potassium dangerously low again. Was transported by ambulance to the emergency room and blood pressure was extremely high. Got to emergency room and also had abnormal EKG. Admitted to the hospital again. Kidneys started failing again. Different nephrologist saw me and after examining me, reviewing my medical records and discussing family health history diagnosed me with Liddles Syndrome and put me on amiloride. So far, so good. I see my nephrologist again in early September. Still have really bad migraines and really bad fatigue. Also don’t have much of an appetite. Have also been diagnosed with major depressive disorder, PTSD and anxiety. Also have fibromyalgia and chronic back pain due to degenerative disc disease that I’ve had for a while. Sorry this is such a long post, but so much has happened in a little over a year.

[Frankie24]

Have you spoken with a nutritionist who specializes in renal disease ? Seems that would be helpful as well given your diagnosis and medication regimen. I don't know a lot about it, I have PKD, also a hereditary kidney disease. Many of your symptoms sound as though they are resulting from the disease, however many including myself suffer from an assortment of health problems along with kidney disease. If you have not, you should learn all you can about your illness, and be your best advocate ! I hope things quiet down for you. I understand that ultimately the recommendation would be a new kidney. I am currently set for dialysis and on a transplant list, has anyone talked to you about any of this ? Take Care and I wish you the best.

[Zazzel]

Wow! Sounds like you've been through a lot! I'm glad they figured out what it was and that you are being treated for it. Welcome to our forum. Feel free to ask questions here or if you just need to vent, that's ok too

[Bassetmommer NKF Ambassador]

Hi Reese,

It is quite a journey you have been on. I am glad you found someone who was willing to dig a little deeper and found the cause of you maladies. Seems Liddles is fairly rare and there is very limited information on it on the Intranet. I hope your doctor will connect you with some form of support. This website has some information on Liddles and organizations: rarediseases.info.nih.gov/d...

Keep us up to date on how you do and we wish you well.