MS Hospitalization Summary
So, I was hospitalized for an MS flare from July 8th to July 23rd. I tried my best to take notes, and have either James or my mom help with taking them so that I could look back and see what was tried etc. I know there are typos! Trying to do this via ipad is much harder than a desktop computer.
July 8th 9am
Decided I had to go to the hospital, the pain could not be ignored anymore. I was too weak to even lift a tshirt.
Admitted, was given morphine for pain, planned a 5 day plan of 1000 mg Solumedrol iv per day.
Morphine given every six hours. Oxycodone given every four hours.
Saturday July 9th
2:30 pm - Pain is more severe, cannot lift arms well, very weak. Trouble holding a phone.
2:45 pm - Morphine given, Backlafin given
4:30 pm - Oxycodone given
6:00 pm - Morphine given
Day one Solumedrol 1000 mg iv.
Leg spasms in middle of night
Sunday July 10th
Doctor came in morning, said would adjust pain meds, and contact Dr. jackson about getting a MRI there in the hospital while I was having a flare up. Doctor discontinued Plaquenil which primary
doctor Snow had prescribed one week prior because he did not think it was necessary.
Legs not working well, much weaker. Started to have neck pain that radiates down shoulders and
arms. Still taking morphine, percocet, backlafin. Day two Solumedrol 1000 mg.
Monday July 11th
Arms had a little more strength in morning, but legs were weaker. Day three solumedrol 1000 mg. Lots of pain in legs and neck, lots of tingling on left side especially in hand. Vertigo, lclench spasms in back of neck. My back felt like it was on fire. Morphine, oxycodone and
Backlafin still given. Problems with unable to pee much but bladder is full and hurts. Almost impossble to use legs.
Tuesday July 12th
MRI in the morning. Symptoms still going downhill. Legs stopped working, fell in floor. Bladder stopped working, had to get a straight catheter twice. Numbness tingling pain everywhere. Day four Solumedrol 1000 mg.
Wednesday July 13th
MRI came back with plaque and brain scars. neurologist stopped by and said I seriously need a plan of action with my own neurologist tomprevent further scars. Cannot walk at all, have foley in. Still haven't pooped since June 27th. Still downhill. Trying low dose Lyrica.
Thursday July 14th
Worst day out of them all. Pain, cannot even lift hands. Trying higher dosed Lyrica.
Friday July 15th
Things are happening. I had a few almost pain free hours. Brain signals are getting mixed up, I no lomger felt like I was right handed. Right side of body very weak and left side getting stronger. I could not write. Trying Delaudid and Torodol instead of morphine and oxycodone for pain. Continuing high dose Lyrica.
Saturday July 16th
First day I stopped the Iv 1000 mg Solumedrol and took pill form prednisone. Started tom reakmout into bad hives all over my body. Lips started tomswell, eyes swelling, throat swelling. Oral benedryl did not help. Doctor czme in to assess the situation. It turns out, that despite my warning that I have an adverse reaction stepping down from steroids too quickly, doctors chose to ignore me and put me on a regular step down of 1000 mg iv to 20 mg pill form. Doctors were shocked that I truly was having an anaphyleptic reaction and finally, after seeing myncondition agreed to taper slowly and listen to my concerns.
3:45 - 62.5 mg Solumedrol iv and 50 mg iv benedryl every six hours
4:00 - EKG done, heart very healthy
Gray team trying to get me with neurologist dr. Block.
Hives lasted all day, throat swelling dispersed by evening.
Tried sitting up and had james try to help me stand, my muscles were noodles.
Sunday July 17th
5:45 am - 50 mg Benedryl iv
9:45 am - Delaudid, Lyrica, 60 mg Prednisone oral.
10:45 am - another EKG done. heart is still fine.
Left arm hurting, right arm and hand still feel alien. Did leg stretches, was able to sit upmin bed without dalling off. Legs started clenching up badly around six, pain got worse, speech was hard. Was trying to wait as long as possible before next pain meds, and was successful at stretching it a few times.
Monday July 18th
10:00 am- got hives and tight throat
12 noon- hadniv taken out it was swollen and hurt
having neck spasms and pain. Got a new iv put in at 4pm. Kept doing leg exercises, was able to sit upmwithout falling.
Tuesday July 19th
10:45 Physical therapist czme by right after pain meds began to kick in. With his arms around me Imwas able to stand upmfor seven minutes until I had a wave of pain and weKness come over me, knees buckled and he caught me. Was able to sit in a wheelchair out of bed for two hrs before Inwas very wirn out. Long nap and felt like I had accomplished something.
Wednesday July 20th
Ups and downs.
Thursday July 21st
Lots of twit hes and clenches, but at least my body was doing something other thAn constantly getting worse. Pressure on tops of thighs helped with leg clenches.
Friday July 22nd
Xray of abdomen since itnhad been 4 weeks and nompooping. Xray confirmed blockages and painful enema given. This resulted in poop!
Saturday July 23rd
Was able to walk a small bit with help. Day 7 of being on 60 mg oral prednisone. Very few hives everyday. Took miralax for constipation. Went to nursing home. Left nursing home and went home. Got all prescriptions except for Lyrica.
Saturday, July 30, 2016
Wednesday, July 13, 2016
Badness
Day six in the hospital 3:53 am.
Everything is stopping working.
Yesterday completely loss strength in my legs. Fell once in the floor.... Itls been harder to pee the past few days and yesterday I stopped being able to go. Two catheters later, they can't put the kind you leave in without doctors orders. So.... Trying to limit fluids till morning. Yesterday was my last solumedrol infusion. Initially one of the neuro fleet ladies said that Dr. jackson said i should stop iv steroids cold turkey no tapering and be sent home. This scared the ever loving shit out of me.
If I stop high dose steroids withiut tapering I get anaphylaxis. But, Dr. jackson did not know this. Apparently the fleet did not read my notes here at hospital either, because dr. Jay of the fleet gave me that look, saying it is extremely rare to have an adverse reaction to steroids. So I had to explain myself, and that it has happened twice and I do not want to die. Good thing I caught that, eh? Tapering for about two months is needed. Also I am weaker, cannot pee, and having increased pain and they wanted me to go home? Physical therapy came in and realized how weak
Imwas... Was (supposed) to notify drs that it is not recommended that I leave hospital care at this time. Had mri today.... Docs did not have chance to look at it yet. Had my mom come up here earlier cuz my sentences were not forming right, and I needed a voice to speak for me when I am panicked and cannot convey my concerns correctly.
Language barrier and bad communication dr. Jay was explaining maybe what I need is a sort of nursing home for you ger people to get better. The jist was this: i have had five day treatment here, they dunno what my ms will do next, I should consider nursing home as I cannot walk, need morphine, tapered steroids (someone to watch me) and an actual neurologist that takes medicaid. Have no idea if medicaid would even cover something like this. This worried me as I feel symptoms have increasingly gotten worse fast, and they wanna kick me out. I need pain meds.... And honestly I have to admit to myself that it is unsafe to attempt to move by myself. Also risk allergic reaction coming off steroids and being alone is not safe.
My arms hurt so bad...hope for answers tomorrow.
Everything is stopping working.
Yesterday completely loss strength in my legs. Fell once in the floor.... Itls been harder to pee the past few days and yesterday I stopped being able to go. Two catheters later, they can't put the kind you leave in without doctors orders. So.... Trying to limit fluids till morning. Yesterday was my last solumedrol infusion. Initially one of the neuro fleet ladies said that Dr. jackson said i should stop iv steroids cold turkey no tapering and be sent home. This scared the ever loving shit out of me.
If I stop high dose steroids withiut tapering I get anaphylaxis. But, Dr. jackson did not know this. Apparently the fleet did not read my notes here at hospital either, because dr. Jay of the fleet gave me that look, saying it is extremely rare to have an adverse reaction to steroids. So I had to explain myself, and that it has happened twice and I do not want to die. Good thing I caught that, eh? Tapering for about two months is needed. Also I am weaker, cannot pee, and having increased pain and they wanted me to go home? Physical therapy came in and realized how weak
Imwas... Was (supposed) to notify drs that it is not recommended that I leave hospital care at this time. Had mri today.... Docs did not have chance to look at it yet. Had my mom come up here earlier cuz my sentences were not forming right, and I needed a voice to speak for me when I am panicked and cannot convey my concerns correctly.
Language barrier and bad communication dr. Jay was explaining maybe what I need is a sort of nursing home for you ger people to get better. The jist was this: i have had five day treatment here, they dunno what my ms will do next, I should consider nursing home as I cannot walk, need morphine, tapered steroids (someone to watch me) and an actual neurologist that takes medicaid. Have no idea if medicaid would even cover something like this. This worried me as I feel symptoms have increasingly gotten worse fast, and they wanna kick me out. I need pain meds.... And honestly I have to admit to myself that it is unsafe to attempt to move by myself. Also risk allergic reaction coming off steroids and being alone is not safe.
My arms hurt so bad...hope for answers tomorrow.
Saturday, July 9, 2016
Hospitalization
2:20 am.....
Exhausted and in a whole lot of pain. Pain/weakness has gotten significantly worse over the past few days. A deep shooting bone pain like my bones are in freeazing cold water and also on fire. I had tried my best to ignore it, but crying pain snd getting no sleep becauseof it is where I draw the line, and accept that I have to go to the hospital. Got into the hospital yesterday morning.
It was agreed upon the resident neurologists and my pen pal neurologist that steroids and pain management is what was needed. Morphine was such a releif, it was anazing to not have to fight this pain. Steroids were given along with more morphine seven hours later. ( having it wear off was pretty excruciating). Nine hours later and again in unbearable pain the nurses informed me that no more orders were authorized by resident doctors. Saying the one iv drip of steroids should have me in no pain.
Seriously?? This sort of intense neuro pain just doesn't go away within a few hours. The evening nurse has been very nice, and has been trying to contact an overnight doc for hours to no avail. Once again I am unable to sleep in the hospital with unimagineable pain and nobody to help me.
The last time this happened was twelve yrs ago. Two and a half weeks in the hospital on iv steroid drip and all the pain management that I needed, including pain meds for a few months after hospital visit. Seriously disappointed in the docs who decided my pain isn't worth their help here.
This shit fucking hurts.
Exhausted and in a whole lot of pain. Pain/weakness has gotten significantly worse over the past few days. A deep shooting bone pain like my bones are in freeazing cold water and also on fire. I had tried my best to ignore it, but crying pain snd getting no sleep becauseof it is where I draw the line, and accept that I have to go to the hospital. Got into the hospital yesterday morning.
It was agreed upon the resident neurologists and my pen pal neurologist that steroids and pain management is what was needed. Morphine was such a releif, it was anazing to not have to fight this pain. Steroids were given along with more morphine seven hours later. ( having it wear off was pretty excruciating). Nine hours later and again in unbearable pain the nurses informed me that no more orders were authorized by resident doctors. Saying the one iv drip of steroids should have me in no pain.
Seriously?? This sort of intense neuro pain just doesn't go away within a few hours. The evening nurse has been very nice, and has been trying to contact an overnight doc for hours to no avail. Once again I am unable to sleep in the hospital with unimagineable pain and nobody to help me.
The last time this happened was twelve yrs ago. Two and a half weeks in the hospital on iv steroid drip and all the pain management that I needed, including pain meds for a few months after hospital visit. Seriously disappointed in the docs who decided my pain isn't worth their help here.
This shit fucking hurts.
Monday, July 4, 2016
Pain
So it's been.. a while since I first posted.
Ups and downs, tears and pain. Fighting with doctors to try to get help. My Neurologist left the practice, she does not take my insurance now. Actually upon calling many Neurologists I have YET to find one in my area that actually does. I still have not have an MRI. Symptoms have worsened.
Right now, the Neuro that I first saw and diagnosed me is helping me via E-mail to get Tecfidera to me, and set up an MRI. She is a very nice person, very idealistic as my mother says, and the only Neurologist willing to help me at the moment, she knows I can't pay out of pocket. That brings me to the subject of funds. Funds=Stress. Stress=Declining Symptoms. Funds are short because I cannot help bring in money we need for Rent/Bills/Food (Eating Paleo is NOT cheap). It's a real issue, but one I cannot think about. Stress really is an immobilizer. If something is too stressful my body starts to shut down... I've had to compartmentalize it into it's own little space in my head, and leave it there for my own safety. I shouldn't start writing right before bed.... sleepy, but in severe pain. That was the reasoning behind reminding me to write on here... super bad pain in my neck shoulders arms wrists. That is it. Tomorrow I am filling out the paperwork for a medical marijuana card, this is ridiculous.
Ups and downs, tears and pain. Fighting with doctors to try to get help. My Neurologist left the practice, she does not take my insurance now. Actually upon calling many Neurologists I have YET to find one in my area that actually does. I still have not have an MRI. Symptoms have worsened.
Right now, the Neuro that I first saw and diagnosed me is helping me via E-mail to get Tecfidera to me, and set up an MRI. She is a very nice person, very idealistic as my mother says, and the only Neurologist willing to help me at the moment, she knows I can't pay out of pocket. That brings me to the subject of funds. Funds=Stress. Stress=Declining Symptoms. Funds are short because I cannot help bring in money we need for Rent/Bills/Food (Eating Paleo is NOT cheap). It's a real issue, but one I cannot think about. Stress really is an immobilizer. If something is too stressful my body starts to shut down... I've had to compartmentalize it into it's own little space in my head, and leave it there for my own safety. I shouldn't start writing right before bed.... sleepy, but in severe pain. That was the reasoning behind reminding me to write on here... super bad pain in my neck shoulders arms wrists. That is it. Tomorrow I am filling out the paperwork for a medical marijuana card, this is ridiculous.
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