My First Post

[chrisamy1029]

Hi everyone my name is Chris, I have beautiful 18mo daughter Shayla and my incredible and gorgeous fiancé Amy, whom I owe the deepest of gratitudes and appreciations ever. They mean the world to me and I will do whatever It takes to feel my best. They are those 2 only wildflowers in an empty field of grass that is my heart. I was diagnosed with end-stage renal disease in 2003,  I have MPGN Type 1. Had a transplant in December of 2004 and it lasted until Fall of 2012, so almost 8 years. Now I'm back on peritoneal dialysis, taking 4 different kinds of blood pressure pills, Epogen shots weekly for the anemia, calcitriol 0.5mcg and tums 2000mg 3x daily. I have had a struggle with my PTH for quite some time and had a parathyroidectomy on May 2nd, 2014. Now, 3 weeks later I'm experiencing what I believe to be hypocalcemic tetany, but don't know for sure until my labs are drawn. I've been experiencing tremors and spasms for the past couple of days, and shocks that seem to be a precursor to the seizures that can occur. I had a seizure last year that put me on hemodialysis for a few months but I'm back on peritoneal. I'm wondering if anyone else has had the same symptoms as me. Has anyone else experienced issues with parathyroidectomies? Also, anyone know anything about the tingling and just overall weird sensations I feel in my hands and legs? I know it's a symptom of hypocalcemia but can it be anything else? Also has anyone been through the ringer in terms of modality? I started pd, had emergency catheterization for hemo, lasted for 3-4 months, now I'm back on pd. Anything like that happen to people? My dr swears that it's because I was missing treatments that all my levels were so out of normal. I'm hoping it isn't my dialysis clearance messing up, hoping that it's an easy fix. Thank you everyone for reading my post!

[PrimeTimer]

Welcome, chrisamy1029! I am just as new here as you are but sounds like you have (unfortunately) waay more experience with dialysis than I do. Sorry, but I am unable to answer your questions but you are at the right place! This site is loaded with bright minds experienced in "all things dialysis"! Keep checking, I am sure someone willl be able to answer your questions. 

[Ninanna]

Welcome Chrisamy and thanks for sharing your story with us!

[Darthvadar]

Hello Chris, and you're very  to IHD...

Great to have you on board... Hope to see lots of you....

Darth, Moderator...

[Bambino_Bear]

 

[MommyChick]

Hello Chris and  !

Hopefully someone here can answer your question better. I too had hyper hyper-parathyroidism while on dialysis. I had to have them removed back in December, a few months after my transplant. I haven't notice any side effects from the removal. Sorry I can't be more help. Hope someone else has the answer for you!
Best of luck!

[chrisamy1029]

This is Chris by the way, my whole issue is with everything that I've been, that we've all been going through, the unanswered prayers, the typical answers that everyone has heard before. I'm truly looking for the out-of-the-box type experience along with its fix. When I was undergoing kidney dialysis in 2003 I was at the University of Illinois Medical Center at Chicago, on the pediatric floor. But the times have changed since then. I am now on the Fresenius Liberty Cycler with automatic exchanges overnight, every night for 10 hours with a total fill volume of 12500mg of 2.5% regular calcium. My last fill is empty, so I am dry during the day. I had a parathyroidectomy operation performed on May 2nd, 2014 and I was discharged Monday May 5th. I was given Tums 2000MG 3x Daily and Calcitriol 0.5mcg 1x Daily. Now, 3 weeks later I'm back at the hospital experiencing what I'd like to believe are auras or precursors, of seizure.  I get these strange whole body shocks, like when you're falling asleep and you catch yourself, boom! That kind of shock, now they say that it is an electrolyte imbalance, but I wouldn't know which electrolyte, since most of them have very similar side effects. I feel parasthesias around my legs, my hands, and my face, and I've experienced these shocks, as you will, periodically throughout my stay. I've been here since Friday, May 23rd and haven't slept a wink. It is now 12:56 AM CST in room 465, they've given me Xanax to help calm me, and now some Sonata 10mg to "help" me sleep. I was given calcium gluconate through my IV and felt real hot and tingly when it entered the blood stream. Now I'm waiting to see what the Doctor has to say, in regards to my shocks. Still having them by the way. Thank you! Maybe this will allow more information about me flow out into the internets web, I'm sure someone has had a similar almost scary similar experience before like mine? I know I have to be on top of my health, I have a beautiful daughter who just makes me want to work that much harder to provide her a life that she deserves, I have a gorgeous and wonderful fiancé with whom nothing would be possible. She does so much for me, being with me knowing all these medical problems and seeing the horror that can happen, throughout all of the stresses. She's there. I can't do it without her! Those two girls are all I live for, everything I am is for them, I hate the burden that I am sometimes am. Shayla and Amy Szybinski (to be). Sorry, I'm venting/ranting. Anyway, anyone that can shed some insight onto these issues please you're more than welcome to. Thank you very much! Just finished a manual exchange. 1:14AM CST. Thank you,

Chris

[PrimeTimer]

In regards to the "brain shocks" you describe, might look up "Brain Snaps". Might be caused by anti-depressants. Might try Gabapentin to deal with brain snaps, pain and even for the sleeping problem. Depends on the dose. 300mg makes me sleepy and the rest of the time, also keeps me calm and I feel less anxiety. Careful with Xanax...it is addicting. It's a wonderful drug but unfortunately, is fast addictive. As for your legs, try a rolled up bath towel or bed pillow rolled up like a tube and placed under your knees or even between the knees in bed might help. I use a rolled up towel and sometime a rice bag made from a cotton tube sock heated up in the microwave for leg pain and restless legs. If you heat a rice bag, be sure to place a small cup of water in the microwave next to the rice bag so that it can add moisture to the air and the rice won't burn. Sure hope you get fixed up pretty soon. Suffering really sucks and definitely not right for a person such as yourself, who is wanting to be there for his daughter and fiance. It's good that you are motivated, sound mentally strong and that's exactly what you need in order to get thru this. And sometimes we have to let our anger be our strength...

[obsidianom]

How are your labs? What did the hospital find? What medications are you on? 

[obsidianom]

Perhaps this will help.

The neuromuscular symptoms of hypocalcemia are caused by a positive bathmotropic effect due to the decreased interaction of calcium with sodium channels. Since calcium blocks sodium channels and inhibits depolarization of nerve and muscle fibers,[clarification needed] diminished calcium lowers the threshold for depolarization.[1] The symptoms can be recalled by the mnemonic "CATS go numb"- Convulsions, Arrhythmias, Tetany and numbness/parasthesias in hands, feet, around mouth and lips.
 Petechiae which appear as on-off spots, then later become confluent, and appear as purpura (larger bruised areas, usually in dependent regions of the body).
 Oral, perioral and acral paresthesias, tingling or 'pins and needles' sensation in and around the mouth and lips, and in the extremities of the hands and feet. This is often the earliest symptom of hypocalcaemia.
 Carpopedal and generalized tetany (unrelieved and strong contractions of the hands, and in the large muscles of the rest of the body) are seen.

[MooseMom]

Oh Chris, I have been a member of this site for 7 years, so I have read a lot of intros, but I have never read anything about these shocks you are experiencing.  I really hope someone can help shed some light on what in the world must be causing this.

I am glad you joined and hope you won't leave if no one here has any answers for you.  I am very curious to know what your docs intend to do for you and if their treatments work.  I hope you share all of that information with us because someone in the future who is experiencing what you are going through may join this site and may be very grateful for any knowledge you gain.

I am very sorry you are I such a bad way but am glad you have two wonderful girls to go home to. 

BTW, I've read posts from many people who have switched modalities rather often, so you are certainly not alone in this regard.

Hope to hear more from you soon.  If you have trouble sleeping, come to IHD and ramble on!

[Poppylicious]

Hello Chris (and Amy and Shayla!) ... I can't answer your questions, but I did want to say  to ihd!

Poppylicious, Moderator

[kuronekochan]

I have exactly the same symptoms as you do when they remove too much fluid. The jerks are called myoclonic jerks, and I have had full-on grand mal seizures following myoclonic jerks. I do not have epilepsy and never had seizures prior to beginning dialysis in 2005. I received a transplant in 2010 which started to go bad in 2012, so I restarted dialysis earlier this year (2014). I had no myoclonic jerks or seizures while I was off of dialysis in that 2010-2012 period. My nephrologist and my dialysis center staff are fairly useless at dealing with these problems, which have at times caused me to fall FLAT ON MY BACK at home following dialysis. The syndrome is described as dialysis disequilibrium syndrome, which apparently used to be very common, but no one seems to believe that it happens today. I have also been hospitalized and had a full investigation done by neurologists, etc. and they found nothing in my brain scans, etc. that would indicate a separate cause for these attacks. What has worked for me is (a) not allowing myself to be overly dehydrated by clinic staff, no matter how much they or the doctor insists on "challenging me" and (b) taking an anti-seizure medication (in my case, keppra/levetiracetam 500 mg/day) prophylactically. Get your nephrologist to prescribe some for you IMMEDIATELY and fight with the dialysis staff, if need be, to prevent dehydration. As I've said to them, which is more dangerous, me having a little bit of extra fluid in my body, or me falling an cracking my head open? I also advise you to google these terms for yourself. (You can actually search YouTube for "myoclonic jerk" and find videos of folks actually experiencing those shocks: https://www.youtube.com/watch?v=qAgyms7j5EA.) Take care.

[LisaBart]

Welcome - and there seems to be some great information in these posts...

[Wat76]

Welcome, you  will get a lot of support and good answers here, but most of all, the people are loyal.