Crazy ER visit--can anyone shed light?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/14/2007 5:34 PM (GMT -7)   
Hi--
My son and I both had problems while we were in town today and had to go to the ER.  As you may remember he has epilepsy focal in P3 and is ADHD and also has a heart condition, syncope and possible wolff-parkinson-white, and orthostatic low blood pressure.  He has been having crushing lower back pain, has some scoliosis and is having numbness in his legs and trouble walking at times and pain in the groin and hips and back that runs down the thighs.  I'm beginning to be concerned that he has some kind of demyelinating disease, his face is red like mine, he flushes, and his skin is dry and bumpy like mine.  Anyway, they did no xray, cat scan, mri of his back, he has never had one done, and they gave him a Medrol dose pack for back and leg pain.  I don't understand this and am scared that it will cause him to have a seizure--he currently takes trileptal and adderal.  Does this make sense to anyone?
 
Then, I have been having black and green diarrhea with severe nausea, the sun sensitivity and itching, and very bad stomach pain.  I was pretty sure I had a gut infection from my diverticulosis and that I was bleeding some, or my liver tests were high.  My CBC, liver, and blood fecal all came out negative.  As a treatment for my condition, they gave me a shot of phenergen, another chemotherapy anti-nausea drug, and were going to give me benedryl, but I wouldn't let them do to an adverse reaction I had last time that apparently they never documented. The two drugs were like putting me in a chemical straight jacket and I could not move and I slept sortof, shivering and extremely cold, for about 30 minutes then they let me go.  I don't know what the purpose of this was.   I have been to this place three times in the last three years and they gave me the same three drugs, once for severe back/neck pain post surgical, once for swollen lymph/salivary glands that I ended up having removed--no antibiotics given, and now for what really seems like a gut infection.  They just said that because I didn't have high white cells they wouldn't give me antibiotics, but my blood runs high in red cells, not white, no matter how sick I am.  Why did they give me these drugs?  Does anyone live every day with severe, severe nausea but you can't throw up, but you wish to God you could?  He did give me some bentyl and stronger nausea stuff.  I'm just so confused.  I feel sicker than I have been in a long time and have physical sick symptoms, but bloodwork not matching.  Does it take a while to show up in your blood?  I'm so confused.  I don't know what's wrong with me, I just feel like I'm dying, like so flu-sick.  Oh, been getting mouth sores with big purple spots in them too and sore gums.
 
I have to see my family doc and she will likely refer me to someone else.  I just dont even know what kind of doc to see.  My rheumy ran some tests and they came out normal.  He says there's nothing on his end.  Any ideas?
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 8/14/2007 6:01 PM (GMT -7)   
See a GI doc and in the meantime take probiotics- a good one with many live cultures. Also avoid sugar. I had the black and green stuff about 2 years ago, have them do a nuclear scan of your gallbladder. It is possible it could have inflammation or be failing (does not need gallstones so insist on the nuclear scan it is pronounced Hide AHH). Also know your body may be getting rid of toxins with the black and green gunk. The spots require a dermatologist and the gums mean you need to see a dentist fast. The irritation can lead to tooth loss. I hope you discover the problem. If non of that works ask for a barium scan and get a gallium scan too. I wish you luck in dealing with this. The probiotics fixed it the black and green stuff for me, along with having my gallbladder out. Know that the bowels can retain rotting matter and old food that didn't digest for decades so this may be your body trying to clean itself out. I hope it isn't an infection or a surgery issue, I am really hoping you just have a low supply of the needed bacteria and that it is making your body nuts because that can be fixed easier than any of the others. Check and see if any of your meds lower white cell counts.
Dx:fibromyalgia 2002, systematic lupus 2005, psoriasis 2006, rheumetoid arthritis 2006, early sjogrens 2006, low positive anti-phospholipid antibodies/lupus anti-coglutant 2001-2004 and 2007, osteoarthritis 2005, Migraine 1994, Compression fracture 2001, Disk problems 2006, Multiple allergies 2006, Post traumatic stress disorder (PTSD) 2007, Bipolar type II 2007, possible siezures 2005, probable lupus CNS involvement 2007

Tx: plaquenil, Imuran, Enbrel, Celebrex, Tramadol, Norco, Singulair, Skelaxin, Evoxac, Clonazepam, Zonisamide, Baby Asprin, Relpax, Copper IUD


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/14/2007 6:42 PM (GMT -7)   
Thanks redrose, for your kind reply. I have some probiotic yogurt in the frig. I haven't been digesting food lately and he did suggest I see a gi guy about my gallbladder or another enzymatic problem. The nausea stuff he gave me is for chemo patients, called zofran, and the shot was something beginning with an a or i and for chemo patients. Even that isn't working well. I did a google on most effective anti-emetics and marijuana came out on most of them, which didn't help much. I'm afraid I'm going to have to live with this, may be liver. You got me scared on the mouth sores, I figured from the sjogrens and taking the anti-nausea stuff drying me out too much or something but will make an appt as soon as I can. I hope you are healing well from your surgery and enjoying your new place.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 8/14/2007 11:28 PM (GMT -7)   
I don't want to scare you but my grandma lost all but 4 teeth due to gum irritation so when I hear someone has it I suggest a dentist right away because had she seen one they could have helped the irritation and saved her teeth.

Know this, liver involvement in lupus is very rare- I unfortunately developed a mild case thanks to my gallbladder being allowed to be inflamed and damaged to the point it completely quit functioning (I started having problems at 13 and they only too it out when I was 28). I have a family history of gallstones but I had no stones- my gallbladder was targeted by my immune system and it got the brunt of things for years. I nearly died because they put off the surgery for so long- the gallbladder can burst like the appendix but it is much worse and a lot more dangerous.

As to the yogurt, it is a nice start but the truth is you need a pill or liquid that is completely probiotic with many cultures. I suggest going to GNC, The Vitamin Shoppe, or a similar store for it. Seriously if your balance is as far gone as a lot of the lupus meds can make (also know lupus screws this balance up on its own too) then you need a heavy duty course and to take it for at least a month more than once a day (preferably 3 or more if you eat small meals) then take it at least one week every month from here on out. It will do wonders for digestion. Also if your stomach empties slowly then this could be a necessary thing because all that stuff gets backed up. Clearing out your system by having only broth and similar stuff for a day or two might help too because it gives the stomach a break. Personally I use motion sickness pills to excess. I also have found that if you can avoid the bathroom for 45 minutes the suppositories of compazine and fenergen (sp both) work exceptionally well- even better than IV or IM meds. Another thing- ginger tea, ginger snaps with real ginger, and ginger pills (yep they make them). I even found that bananas can help- see often being sick to the stomach is caused by multiple factors and having an empty stomach makes it worse. I have morning sickness all 8 months I stay pregnant when I am lucky enough to get past 12 weeks.

I am healing very well- only 2 small areas have not completely closed and those are from irritation from being required to wear a bra 24/7 for 3-4 months following surgery- my skin is really delicate and clothes can give me ulcers if I wear them too long. The new place is coming along nicely. I am actually officially in remission on the lupus- the RA and fibro are still a problem.

I recommend you get some of the mouth spray they sell in most drug stores for dry mouth- I think it is Oasis or some such thing. Also keep water constantly on hand. Even if you don't drink rinse your mouth regularly and it will help a lot. Coke syrup can be purchased for nausea and works really well for some people. Also rearranging your meds can help too. I switched all my plaquenil to nighttime and it helps some. I have an over active gag reflex- if I put anything other than food (and some foods) beyond the middle of my tongue I gag and sometimes can't help puking. Left over from a combination of childhood trauma and the fact I was anorexic/bulimic for several years. Actually I still have trouble with the anorexia but the bulimia well, that was never a huge part of my problem with food and I broke that habit when I got pregnant the first time- trust me puking your guts out for 8 months straight will cure you if you have a mild problem.

I really hope you get better soon. I hate to see someone else suffer like I did- I was years getting help so I prefer to offer my experience so it may help speed treatment. (gallbladder problem not my food issues though I have tried to dissuade those young people who see anorexia or bulimia as a good think and cool).
Dx:fibromyalgia 2002, systematic lupus 2005, psoriasis 2006, rheumetoid arthritis 2006, early sjogrens 2006, low positive anti-phospholipid antibodies/lupus anti-coglutant 2001-2004 and 2007, osteoarthritis 2005, Migraine 1994, Compression fracture 2001, Disk problems 2006, Multiple allergies 2006, Post traumatic stress disorder (PTSD) 2007, Bipolar type II 2007, possible siezures 2005, probable lupus CNS involvement 2007

Tx: plaquenil, Imuran, Enbrel, Celebrex, Tramadol, Norco, Singulair, Skelaxin, Evoxac, Clonazepam, Zonisamide, Baby Asprin, Relpax, Copper IUD


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/15/2007 9:12 AM (GMT -7)   
Thanks redrose, I have been told to go on the broth diet, but I did have a banana and yogurt. We don't have a gnc within an hour from me or any health food store and the local pharmacy only carries vitiamins, so I have to get someone to drive me somewhere to get some pills. The nurse actually suggested enzymes but the er doc was unwilling to do anything about my gallbladder as he said that it is not an ER room issue, and my bilirubin was not high (I don't think I make the stuff or something because it was never high even when I had acute liver disease and was deathly ill). Whatever they gave me in the hospital cleared up the blackness/greeness, I was mostly worried about my divertilosis bleeding or becoming infected. I think you are right about the gallbladder, and when it doesnt work you don't get nutrients from food and you are hungry all the time. I'm sorry to hear about your past anorexia and all, you've been through so much, just not fair. When I get yelled at so much about my weight from the doctors and I know and they know it is killing me, I feel like getting hooked on laxatives or becoming bulemic, but I know that will just make things worse, especially on the esophagus and the other end and probably more I don't know about. I'm so desperate. One of the recommended treatments for metabolic syndrome/fatty liver is bariatric surgery, which I did ask about, though I'm not that overwieght, but it is all in my belly, like I'm 9 months pregnant. They don't want to do it because they claim it is unsafe and causes digestive problems, which I already have.

I'm glad you are healing well, having to wear a bra all the time makes me hurt just to think about it. I hope your skin strengthens soon. I'm looking at the same thing due to my neck, they've pushed me to get it before I don't want to and am trying instead to diet strictly again. It sounds like it was very painful and takes a long time to heal.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 8/16/2007 1:46 AM (GMT -7)   
I can honestly say the worst of the pain was over in 5 days then only mild soreness. Considering how much it helped my neck and shoulders and back my pain level actually was down by day 2. I take longer to heal because my skin was so thin and messed up due to pregnancies and also the fact I got weird skin infections from them being so big and heavy and rubbing against the other skin- yeasty type infections 2-3 times a year. Might see if insurance will pay for a tummy tuck. Sometimes Medicaid will. Often diet will not fix the problem. I lost weight and mine did not shrink at all. Heck mine never stopped growing. My hope is I will not need a repeat surgery several years from now- I hope she removed the tissue that was growing. I paid nothing for my reduction but hear it can cost 4000-8000 depending on how much work is involved.
Dx:fibromyalgia 2002, systematic lupus 2005, psoriasis 2006, rheumetoid arthritis 2006, early sjogrens 2006, low positive anti-phospholipid antibodies/lupus anti-coglutant 2001-2004 and 2007, osteoarthritis 2005, Migraine 1994, Compression fracture 2001, Disk problems 2006, Multiple allergies 2006, Post traumatic stress disorder (PTSD) 2007, Bipolar type II 2007, possible siezures 2005, probable lupus CNS involvement 2007

Tx: plaquenil, Imuran, Enbrel, Celebrex, Tramadol, Norco, Singulair, Skelaxin, Evoxac, Clonazepam, Zonisamide, Baby Asprin, Relpax, Copper IUD


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 8/16/2007 8:49 AM (GMT -7)   
Marji; Getting slammed, huh. I feel for you. I hate the double whammy where you are too sick to care for your sick kid and you. You son's case sounds scary at best. He needs a neurologist and to take him to a great children's hospital, where they aren't stupid. Has he had his ANA's checked? My guess is that you may not get very far with a rheumatologist at this point, but it may be worth a preliminary visit. It is so nerve-racking when it is your kids. Mine has been in flare for the last four days and I am just waiting around to see where it will hit next. My fear is that since this flare is bad what comes next will be real bad. It is so overwhelming at times. Just have to keep the priorities in check constantly and get to the appointments.

Nausea like you have, I have had since September last year. It stinks. Ginger and dandylion tea did help me some. Just research it a bit and ask the clerk at the health store if it sounds okay for you. Some roots have bad side effects and can make things worse. As for me my liver felt better, kidney felt worse. But the nausea was much better. Did they test your liver and kidney while you were at the ER? Yes, I am going to keep harping on you about that. One of those gut instinct things again. You need a specialist ASAP. I think you know that. Priorities again. Perhaps make the appointments, then tell the PCPs you need a script. Sometimes it works.

Keep me posted. Lately you have been my partner in crime. I worry about you I think as much as me and my kid. HUGS and prayers for some answers - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/16/2007 9:48 AM (GMT -7)   
Thanks for the info redrose and Kris--
I've been trying to get info on bariatric surgery or some kind of stomach help at least to find out if its organomegaly (well I know some of it is from my fat fat liver which presses on all kinds of things), water, or fat that's on standby to be shoved into my liver somehow. It's frustrating. Does the reduction get rid of side and back boobs? I just don't want to get rid of the front ones!

Kris, I was hoping to hear from you on my son's problem. The docs he's only ever seen a primary care and his neurologist, who could care less and just gives him pills and a hard time, and a cardiologist who is extremely frustrated with the whole situation with the electrophysiologist, who refuses to run the diagnosic cath he needs to rule out wolff-parkinson-white so it can be fixed and we can be done with the cardiologist. Sound like a cluster of idiots?

Anyway, I'm frustrated, he's frustrated. He's got a heart monitor under his skin that tells the cardiologist absolutely nothing about whether he has WPW, and the electrophysiologist blames everything on epilepsy and doesn't want to do the cath, which is so low risk and could save my sons life by curing the WPW. Anyway, the neurologist assures us it's not his epilepsy, I agree on that part, but does no blood work for any of the hereditary conditions I have that might contribute to my son's neurological problems. The doc gave him a medrol dose pack because they didn't want to give him narcotics for pain, they didn't care if it gave him a seizure or heart attack. I'm afraid for him to take it, he is so moody anyway.

He definitely needs some bloodwork, our PCP isn't too bad, she tried to get him into another neurologist, they weren't taking patients. He can't go to a children's hospital because he's nineteen. I'm afraid he might have some kind of demyelinating problem, but its hard to tell with epilepsy because the medicine causes such bad side effects. He is on trileptal. Have you ever taken that Kris?
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/16/2007 9:52 AM (GMT -7)   
Kris--
liver normal they claim, didn't see paper. Urine normal they claimed, smelled like ammonia when I went, dark. They say normal because they don't want to do anything. I'm telling you, this is the worlds worst emergency room. I can go out in the country to a little hospital and get better care from better physicians. Anyway, I had some severe pain last night on the right side up by my ribs, pinching like, I think maybe I had a gallstone or something. The pain went away so I see my primary's PA on Sat. That's nice, Sat appt isn't it? They are pretty cool there.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 11, 2016 3:08 AM (GMT -7)
There are a total of 2,736,257 posts in 301,364 threads.
View Active Threads


Who's Online
This forum has 151454 registered members. Please welcome our newest member, rmk1990.
141 Guest(s), 4 Registered Member(s) are currently online.  Details
George_, Heatheranne87, Stetsonva, lavendar


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer