Hypomagnesiumia, I am a ticking time bomb!!

[curleysue]

I am looking for advise to keep my magnesium pills down. I have had hypomagnesiumia for 2 years now and have been to see a nephrologist who said my kidneys are excreeding the mag too fast causeing me to be too low. When I am low my muscles burn, twitch, cramp, ache. Its just awful, I am nearly bedbound when I am low. Also I just got an ablation for SVT and when I am low my heart has some irregularities, PVC's, tachy. My cardiologist wants my serum mag level to be at least above 2. I run at 1.1 at my lowest when I am really sick. Without magnesium my asthma acts up, my fibromyalgia acts up and my migraines start. So I am a mess.

For the last 2 years I have been recieving intravenous magnesium sulphate through my port twice a week for 5 hours each infusion. So, in other words my second home is the infusion center at our local hospital. I am like family there. Well this is the deal, my blue cross insurance cut me off completely cause of reasons that we are fighting with a lawyer about like medical necessity cause I am a high end spender with medical. Anyways so I finally got insurance through my work but its not as good as blue cross. It has no out of pocket maximum and my infusions which cost $700 each time are only covered 70%! So each time I go in for infusion it costs a little over $200. My paycheck each month is only $1000 so I cannot afford to get as many infusions as before. In fact even if I get them once a week that is nearly all my paycheck.

I am stuck. Right now I am bedbound, sicker than a dog cause I haven't had my infusion in 6 days. Any attempts at oral mag has caused severe, I mean severe vomiting, nausea and diarrhea. Its awful. We have tried Slow Mag, Mag Oxide, Mag Chloride and we are now going to try Mag Gluconate. I just have a feeling its going to be the same old thing. I have tried just about everything to not get sick with the oral mag, taken it with food, taken it with phenergan suppositories, taking it in little doses. I cannot think of what else to do.

Our hospital does provide financial help for people who have a low income and cannot afford the bills but I don't think they will help me all the way. I am so so sick right now. Pain everywhere. And my cardiologist would kill me if he knew my magnesium level is so low and that I am having heart problems. What am I to do. I will get an infusion tomarrow. I have to. Once I get an infusion I immediately all my symptoms go completely away, however it only lasts about 3 days at the most. They are increasing my dose starting tomarrow to 5grams mag sulphate in 100cc NS. So I don't know if that will make the relief last long or not.

Any ideas? I know hypomagnesiumia is rare the way I have it. The kidney doctor wants me to be on infusions for the rest of my life. How am I supposed to do that? Not only can I not afford it but I don't want to spend my life in a hospital!

Anyways thanks for listening. I feel like a ticking time bomb with my heart without the needed magnesium. My heart has had an episode landing me in ICU where my mag was so low my heart was irregular and beating 220 beats a min. I don't want that to happen. HELP ME! Thanks, Curleysue

[Sis123]

Hi Curlysue.....

I havent't read thiss thread in a long time and was wondering how you were doing? Any better? Let us know.....

hugs

Sis

[wavanslyke]

Oh. My. Lord.

Curleysue, you are a complete and total godsend. My mother is exactly the same way. Almost to the letter, your two cases are alike. Same time frame... A bit over two years. Same exact problems. Except her doc took her off the oral mag because she, too, was getting really sick. She goes into the Day Surgery at the local hospital every wednesday for an infusion.

After two years of searching, this is the first I've ever seen or heard of a case like my mother's. My mother is marginally older than you, but that's really the only difference between the two of you...

Though i didn't really find anything here to help my mom (we've tried all the suggestions already, hate to tell you...), I am just overjoyed to know (I'm sorry if this sounds horrid, and I don't mean I'm happy you're sick, in fact I'm very sorry because I know how hard it is) that we aren't alone in this, you know?? Maybe if it's not JUST my mom, then some doctor or other out there will know what to do, and something can be done...

You're in my thoughts curley sue. Message me if you ever need anything. Even if you just want to talk.

[jeandawson]

That's very disturbing.

I am familiar with hypomagnesiumia. Unfortunately, my one-week old baby has low mag levels, is recieving iv mag infusions, has bouts of VTACH and I'm terrified, to say the least. I'm surprised to hear of the port infusions, similar to dialysis, yeah? This low level was also found in me, and would explain quite a bit (fibromyalgia, migranes)

I do hope your situation becomes manageable, however I know that things are difficult. I feel for you and your dilemma. I pray for you and your sanity. I know it's not easy, I'm not even there yet, but see it's not going to be an easy road.

Thank you so much for sharing, I've actually learned alot from your post. Vital information on a rare condition... is appreciated. It's not easy to find. Thank you.

[gentlegiver, ASN, LPN, RN]

Sorry you are having such a tough time!

From what I've heard about applying to disability is:

1) SS automatically denies the person the first time around (unless, I guess, they are in hospice or something like that)

2) You need a disabiliity lawyer to help you get your claim approved. It's terrible, I know, but that seems to be the way it is. The good thing is that you will likely get your claim backdated and so receive money from previous months--usually in a nice lump sum.

Good luck,

NurseFirst

I agree get a Disability Lawyer, most of them will reserve payment until you start collecting checks. My sister applied twice on her own, refused both times, her body is totally arthritic, she can not sit, stand or walk for more than 5 minutes at a time. SSI told her she could find a job that would allow her to sit, stand or walk every 5 minutes (I'd love to know what job they were thinking of), anyway, she got a lawyer and her SSI was approved.

[CrunchRN, ADN, RN]

No advice except to definitely follow up on that consult witht he health science specialists. Very glad to hear your insurance news. Now that you will be feeling better you need to pursue everythign while you have the strength because the insurance company could pull some other trick again at any time.

Wishing you all the best and a break through health wise. You deserve it.

[rita359]

Have not read all the replies but it sounds to me like you need to get yourself to a research hospital,mayo or whatever . Seems like you have exhausted what your current doctors are able to do. Going back to the same old just gets you the same old results. There should be an answer out there. Sometimes we just have to do what we have to do!!!

[Havin' A Party!, ASN, RN]

Congrats, Curley! Your persistence has been rewarded.

Hope all goes well for ya.

[LACA, BSN, LPN, RN]

The original post is about 6 years old, so I'm not sure if curleysue is still available on AN or not.....

[CrunchRN, ADN, RN]

The original post is about 6 years old, so I'm not sure if curleysue is still available on AN or not.....

Geez - never noticed that. Hope she is doing really well now!