Here At Cleveland Clinic, Again

[LindaJoy]

Hi, everyone,

Just a quick update, as I'm on a hospital computer and am not feeling the best. I'm back here at Cleveland Clinic. I've been here for a week, after being in my home hospital for five days before that. I was ambulanced here, again.

After much argument, again, they finally did some tests and found gastroparesis. They tried me on Reglan, but after one day on it--three pills--my nervous system couldn't handle it. I layed in bed and shook for over six hours. I slept through the night, then was a nervous wreck half of the next day. My doc said it wasn't from the Reglan--although he said others have had this reaction--but in my case, it was probably anxiety--"Was I worried about something at home?" Why is it others can have a nervous reaction to Reglan, but in my case, it's just from nerves?

Anyway, a Dr. Perikh came in to see me the other day. He said that he suspects I have either a mitochondrial or metabolic disorder. Either of these would account for what's been going on with me this year. These are very rare disorders and hard to find. I have months of testing ahead of me. They're trying to get some of the tests done while I'm here at CCF.

Oh, it just gets better and better all the time. Before coming here last week, my home hospital put a TPN tube in my arm so I could get some nutrients. Four days later, CCF took the tube out. I now have a blood clot in my right arm. I'm on two blood thinners for it. The docs said it's nothing to worry about, as it probably won't move, but it does need to be treated. Within one day on blood thinner shots, the lump is gone and the pain is better. They said that's a good sign. Anyway, I'll have to be on blood thinners for three months. Anyone experience with this? I'm very, very nervous first, about having a blood clot and secondly, about being on blood thinners. Any advice or words of comfort would be most appreciated.

Well, I'm going back to my room. Oh, anyone with gastroparesis: Do you have to take meds for it? I seem to do better on a liquid diet. I know I can't tolerate the Reglan, no matter what the docs say.

Hugs to everyone.

LindaJoy

[MightyMouse]

My gastroparesis has been transient--I go through periods of shut down, and periods of my guts working correctly. I've been very fortunate; I know many other people suffer a great deal more than I do with poor or zero motility.

For me, a very low dose of an ssri seems to help with keeping my motility. When I've gone off the ssri, my guts just stopped. The dose I'm on is considered too low for a theraputic effect (based on my weight)--but don't tell that to my GI tract, because it's working.

I take glycolax--it keeps me from getting too backed up most of the time, although even with it, I still have periods of up to 7 days where nothing moves. At that point, I'm usually so nauseated that eating solid food is just a nasty thought--water and gingerale are pretty much all I want then. There was a period 10 or 12 years ago, before my autonomic dx's, where I had to drink my meals--shakes. I hate them. I barely like milkshakes with icecream, so the nutritional supplements were... well... you get the idea. I weighed 30 lbs less than I do now -- which finally got my doctor's attention because for my size (lack thereof ), a loss of 5lbs is noticable. Not sure how or why, but my guts got moving again on their own.

I hope they figure out what's going on for you and help you to feel better.

Nina

[Dizzy Dame]

LindaJoy,

I'm so sorry all this is happening to you! Hopefully if they can find what kind of mitochondrial disease you have, there will be some new treatment options for you. In the meantime, you'll be in my thoughts.

I haven't been directly diagnosed with gastroparesis, but I do have periods of weeks (sometimes longer) where eating more than a bite or two of solid food makes me very nauseous and feeling bloated. Usually when this happens, I sip a can of Ensure over a period of an hour or so as a substitution for meals. If I sip the Ensure, it seems to help. However, Ensure does have ingredients that may upset your stomach, so I'd talk to your doc about it first.

I hope this hospital trip brings you at least a little relief!!!!

((HUGS))

Lauren

[cardiactec]

hi lindajoy,

i am so glad they are starting to get some answers for you. i am currently trying to get my doc to test me for mitochondrial disease and some metabolic disorder cuz i know mito disease can be linked to the cause of paresis. he is hesitant to test me for it cuz typically if your mom doesnt have it, you dont. but i have talked to people who have been diagnosed with paresis, who have gone on for testing for mito disease even though their mother didnt have it, and bam, positive for mito disease.....so hopefully you'll get some further answers aside from the paresis. paresis in itself isnt exactly a primary diagnosis, every malfunction in the body is caused by something going wrong, even if they say that the majority of people they see with gastroparesis is because it's idiopathic (that just means that they couldnt find out the cause of the problem, doesnt mean that there isnt a cause/reason behind why the stomach isnt working right) ..........hopefully they just dont call it idiopathic for you and start running those tests. i'm sure they will be running tests, from what it sounds in your post.

take care.

by the way, reglan, though it didnt cause any symptoms with me, it didnt help either...........

hang tight, i believe they'll find some answers for you.

angela.

[LindaJoy]

Thanks for your replies, everyone. It just seems to be getting better and better. It's getting harder for me to keep hanging in there! I'm getting more and more depressed. I'm so sick of hospitals, yet I need to be in them right now. I feel like I'll never be well again.

I guess my biggest fear right now is going home, only to get really sick again and end up in the hospital again, which would be for the 11th time this year.

Anyway, my gut pain got so bad a couple of weeks ago, that I passed out for over half an hour, had two convulsions (luckily my husband was home), then my stomach just quit working. That's how I ended up back here in Cleveland.

Is gastroparesis serious? I've read opposing opinions. The docs here at CCF don't seem to be too concerned about mine. They said that my stomach hasn't stopped, just slowed way down. I have been able to gain a couple of pounds here. In fact, as of my weighing this morning, I'm up to 114, which is a far cry from the 102 I was down to a few weeks ago. I eat every two hours, and it's not just liquids. I'm able to eat crackers right now. And, I am having bm's. Sorry about the graphics, but I'm happy for that. For nearly six months, I had constant diarrhea, then full but too frequent stools, then nothing. I have had to have laxatives lately, believe it or not. My body is soooooo screwed up. But, hopefully, I'm finally in the right spot with Dr. Parikh, the mitochondrial / metabolic doctor.

Oh, they are running the first round of mito / meta tests while I'm here. Hopefully, we'll know something in a few weeks.

Thank you everyone for all of your hugs over this year. It has been a nightmare, as you know. I love you all and feel very blessed to have you all in my life.

LindaJoy

[Sunfish]

hi linda -

i'm sorry that you're still struggling so but glad that you're (hopefully) in the process of getting some answers.

i know that i've shared a lot about some of the things you're asking about already either directly or on the board in general but will chime in with a few "highlights".

Gastroparesis

regarding whether or not gastroparesis is serious, it can vary widely. for some it is & for others it isn't. for some it changes over time. in some cases people can have very mild intermittant symptoms with occassional "flare-ups" and perhaps some minor adjustments to their diet; at the other "end of the spectrum (where i'm currently at but definitely not the norm) people can't eat at all, still vomit b/c they can't even digest what is produced in the GI tract itelf, and are entirely dependent on either tube feeding or IV nutrition. most people get at least some relief via medications &/or changes in diet. a gastric emptying test - which i'm guessing you had in order to get the diagnosis - can give some indication of severity but it's not the "whole story" so to speak since things can vary a lot from day to day for many people. if you find out your "emptying time" or "half-emptying time" though it will give some idea of where you are right now.

like you've already discovered - liquids are much easier to digest than solids, which often gets people over rougher patches. GP has been discussed a lot on the site so you may want to do a search once you're home. there are also links to various "GP diets" that myself & others have posted in the past within the posts that i'll try to pull up for you when i'm able. and there are GP support forums & chat rooms as well.

in terms of reglan, many have trouble with it, either right away or after time. i did okay for a period & then started having scary neuro symptoms; this isn't unusual at all & thus it's not recommended for long-term use. domperidone/motilium, a med that has to be imported from canada (or elsewhere) often helps people without the side-effects of reglan. other meds that help motility for some - directly or otherwise - are erythromiacin (actually an antibiotic, but in small doses can increase motility), zelnorm and mestinon (also an "off label" use). and various anti-nausea meds can be helpful for some.

some also benefit from a gastric pacer, but this is never even considered until all other treatment options have been pursued to the extreme.

i will tell you that - according to what the clinic told me themselves - there are no gastroparesis experts there these days. it doesn't mean they can't diagnose or treat at all but just that depending on how much of an issue it is for you going forward to give you a heads up.

Mitochondrial Disease

in terms of mito disease, on the other hand, the Clinic is one of the two or three top places for diagnosis & treatment in the country. one of the best mito doctors is there & while it's not likely that you'll see him (esp. as he works largely with peds), other docs involved in your care likely have some access to him & those who work with him. so if mito ends up being part of the picture for you you're definitely in the right place.

i won't go into the details again but as you know i have a tentative mito diagnosis & have had some benefit (cognitively) from treating certain deficiencies that often go along with it. we're currently debating whether to proceed with the biopsy now or hold off & i'll actually be at the clinic tomorrow to see my autonomic neuro.

TPN/Central Line/ Blood Clots

i'm guessing the "TPN line" you're referring to is a PICC line. obviously a blood clot isn't something to mess around with but it's not as dangerous with a PICC line as with other types of central lines (b/c of the location) and clots related to any type of central line are generally more easily managed than a clot, say, in the leg. it sounds like things are headed in the right direction in terms of treating the clot.

i've had a central line of some sort since march & in august had an infection & multiple blood clots related to my broviac line (a more permanant type of central line that is "tunneled" into the chest). i had to have the line removed b/c of the number of clots & their location & then was on lovenox (most likely the shots you've been getting to help dissolve the clot) for about 10 days & coumadin for about 2 months. i was supposed to be on the coumadin for 4-12 months (depending on which doctor) but we stopped early for me as i had upper GI bleeding; this was only b/c of the frequency with which i vomit so i'm certain it won't be an issue for you.

with coumadin you do have to have fairly regular bloodwork but otherwise it shouldn't be a problem. just a few things that are good to know though. you can't have many procedures & some testing while on it so just make sure that anyone & everyone involved with your care is very aware that you are on it. i.e. if you have a muscle biopsy - the gold standard for a mito diagnosis - you can't be on coumadin at the same time. i think you have to be off for about a week but just make sure the docs know & that you understand the timing on things. along the same lines some meds react with coumadin, thus requiring higher or lower doses, so just make extra sure that all your docs are aware of all your meds at all times.

additionally - if you (hopefully) are able to eat more variety while still on coumadin there are a few things that mess with the way it works in the body. the one i know of is spinach but i know there are others; i'm not in the know about this b/c i couldn't eat at all while on coumadin but you could ask to talk with a dietician while at the hospital to find out all the info. might as well take advantage of the resources while you're there.

i hope all this is helpful to you in some way. i'm probably the one person on the forum who has - to some degree - dealt with or explored every item you mentioned in your post so i did my best to respond.

hang in there.

melissa

[mom4cem]

Hi Linda,

Sorry to hear you are in the hospital again. I just hope that you get some solid answers,,,,soon! I know you must be so frustrated to be in and out and the worry about being home only to have to go back in.

I for one never realized how tough it can be to find out what is going on and getting help. I am seeing more and more of that in your case, most everyone's case on here and mine.

As frustrating as it is please hang in there.

[LindaJoy]

Hi, everyone,

I'm home from the Cleveland Clinic. How long I'll be home, who knows? Just wanted to let you all know and tell you thank you for your support and information. Melissa, I know how hard it is for you to get on the computer, especially to post so much information. I truly appreciate it. I'm also sorry for all you've been through and are going through.

I really feel like I'm in a big bubble right now, not feeling at home at my house or even in my own skin. I've been in hospitals too much this year. I'm also so scared about this diagnosis of mitrochondrial disease. I know, at least it's a diagnosis, finally, but wow, I wasn't expecting something like this. What's awful for me, too, is that my kids have symptoms like mine, and if I have this genetic disorder, more than likely, almost 100% sure that they do, too. In fact, Dr. Parikh's assistant said to me, "Once we get you diagnosed, the next step is to bring the family up here." She also meant my aunts, brothers, mom, cousins--as most of my family shows symptoms. I feel so guilty about my kids. If only I had known...

Anyway, thank you everyone for all of your support this year. It's not over yet, as I am still in testing, but I think we're finally getting close to what is wrong with me. As I said, I wish it wasn't what they're sure it is, but I guess we have to deal with what we're dealt, huh?

Hugs to all,

LindaJoy