erikainorlando Posted March 16, 2010 Report Share Posted March 16, 2010 OK... so the neurologist that was doing a hospital to hospital transfer went on vacation and the hospitalist said I could go to vanderbilt outpatient...wow.....I can't stand at all...or I should rephrase that...I can't stand more than2 minutes after being awake for more than 30 minutes.. I hurt so bad. I am scared I will never be able to walk again...what is wrong can this be dysautonomia?outpatient..wow god help us. So I am having my 16 year old daughter fly with me tomorrow. She is strong enough to carry me...and we are out of other options. I feel badly pulling her from school but I am so stuck and sick ... my ex-husband and mom are well not even close to available. On my labs my choline is low....along with a few others being off but the choline struck me as I hear a lot about actelycholine here...any experience?Well wish us luck...we are on a wing and a prayer. I really love you guys....Erika Quote Link to comment Share on other sites More sharing options...
iheartcats Posted March 16, 2010 Report Share Posted March 16, 2010 I do wish you luck. And a few days of school - those can be made up. Life has emergencies and I am sure your daughter would rather help you and deal with making up school later. She is old enough to understand.Let us know how you are when you get in and that all is well. Quote Link to comment Share on other sites More sharing options...
Chaos Posted March 16, 2010 Report Share Posted March 16, 2010 What a drag that the neuro didn't make sure the orders for the transfer were in place before he left.We'll be thinking of you. Keep us posted on how it's going. Good luck tomorrow with the traveling. Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 16, 2010 Report Share Posted March 16, 2010 Hi Erika-Any chance that they will simply admit you after assessing your condition? Have you (or your hospitalist) posed that question of Vandy? Shame on your current hospital for not doing this properly.I did a quick internet search. Low choline is preferable to high, which has been implicated in heart attacks, etc. However, I think you are on to something as far as this relating to your condition, especially if your choline is significantly low. See below:"Choline deficiency has been associated with liver damage and its bioavailability is important in brain development of fetuses and newborns. Choline is also a precursor of acetylcholine, a neurotransmitter involved in muscle control, memory, and many other critical neurological functions."I will pray that angels surround and carry you during your transfer. I've had to transport my son (seeking help) when he was barely conscious. My heart breaks that you are dealing with this. Answers are coming. Stay strong. Gentle Hugs- Julie Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted March 17, 2010 Author Report Share Posted March 17, 2010 Your posts made me cry. Well everything is making me cry lately...tough time for us. But WE ARE HERE!!! My daughter did great. My neighbor carried me down my stairs as I collapsed trying to put somethings in a suitcase. She drove me to get my daughter and my sweet 16 year old daughter took it from there!!! We had to change planes in Atlanta...she was whissing me past everyone in my little wheelchair. Thank you Julie for telling me of your son. It helps to hear others have gone thru all this insanity....just to get help. I don't know if they will admit me or not. I kind of hope not cause I have Jessica with me. But I am so weak...I worry about my breathing to be honest. And my shaking...I shake and fall and crawl...but I still have my makeup on girls!!I appreciate your support so much...you are like angels holding me up. I'll keep you posted.Erika Quote Link to comment Share on other sites More sharing options...
Noreen Posted March 17, 2010 Report Share Posted March 17, 2010 Thank God you've safely. I've been keeping you in my prayers.Your daughter is one special young lady. Give her a hug and kiss from us in gratitude for getting you there.Keep the faith!Noreen Quote Link to comment Share on other sites More sharing options...
janiedelite Posted March 17, 2010 Report Share Posted March 17, 2010 I second Julie on this. I travel with my mom across country every year to see her oncologist, even though it's hard on me. I wouldn't have it any other way. Your daughter is proud that she can help her mom. I said a prayer for strength for the both of you.I hope Vandy can give you answers soon. Please keep us updated. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted March 17, 2010 Report Share Posted March 17, 2010 I second Julie on this. I travel with my mom across country every year to see her oncologist, even though it's hard on me. I wouldn't have it any other way. Your daughter is proud that she can help her mom. I said a prayer for strength for the both of you.I hope Vandy can give you answers soon. Please keep us updated. Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 17, 2010 Report Share Posted March 17, 2010 Erika-You make me laugh. Now, I'm imagining, this exquisitely "made-up" woman, draped over her teen-age daughter, waiting to be seen at Vandy. I LOVE your sense of humor (and vanity-me too ) in the midst of this real emergency. Please give us an update when you are able. I know so many here are sending prayers and well wishes your way. I'm hopeful that they just admit you until they have your DX figured out. Your daughter will be fine. They can throw a cot in your room and she'll enjoy a little break from school. Hugs & prayers-Julie Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted March 18, 2010 Report Share Posted March 18, 2010 Continued prayers and hugs for you God bless your amazing daughter as well. Please hang in there and keep us updated... and don't stop wearing your make up! Ha Ha Don't lose your sense of humor. Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted March 18, 2010 Author Report Share Posted March 18, 2010 Hi all!long day for sure. We had the SVo2 treadmill test at 9. I lasted 44 seconds before collapsing. Legs shaking hr 174. So ill after that as you can imagine...tried to get back to the hotel but the rides got all goofed up and we had to just wait for the AFT. I thought I was going to die or vomit of both so they gave me a blanket and pillow and I slept on the loveseat in the waiting room for the AFT. Now the AFTI do the breathing etc. then she says I have to stand...I say I can't. So she does a tilt. Straps me in after 4 minutes I start really shaking. My head falls over. I keep trying as I have come all the way from Orlando. They have me strapped in...but then I start convulsing...cna't control body movements. shaking...controrting my body.and scream to put me down. I continue to shake and convulse. My daughter runs into the hall with the tech to get help. After about 30 minutes they get my doctor who gives me ativan..via iv and it helps enough to meet with her. (but I had to re-apply my lipstick!)Long story short she says yes, I have POTS but it is a secondary problem. But she doesn't know what the root problem is immediately. She needs to review EMG's etc. wants to try to hae me meet with neuro-muscular folks. I am still scheduled for the QSART and blood volume tomorrow. But we don't know how quickly the neuro-muscular folks will act. My body hurts so bad. I am terrified I have no more real info than I had before I ccame...only more confused. Scared and sick. I spent all this $$ to get here and it doesn't even seem to be my real problem. Trying to keep the faith here folks....just some answers. Please keep the stories coming of those who have traveled in desperate states to other states...it helps. More tomorrow...thanks for all the good thoughts!Erika Quote Link to comment Share on other sites More sharing options...
potsgirl Posted March 18, 2010 Report Share Posted March 18, 2010 Erika,Thanks for keeping us up-to-date on your situation. Please keep doing so, as I'm sure there are many of us thinking of and praying for you. I really hope you get some answers soon!Ciao~Jana Quote Link to comment Share on other sites More sharing options...
babettess Posted March 18, 2010 Report Share Posted March 18, 2010 Oh Erica! What a day you have had. Hang in there and hopefully they will discover the primary issue while you are there-like maybe tomorrow!!!!I traveled 5 1/2 hours to Cleveland Clinic last year and had many of the tests you are having. They are not fun and they do wear you out. Take care of yourself. Make sure you stay hydrated and try to get some rest. Tomorrow will be another big day! Hopefully the neuro-muscular people will be able to see you and will figure out what's causing you to be so ill. For the QSART and blood volume tests at least you will get to lie down.Give your daughter a big C-H-E-E-R for being so helpful. I will be praying that the neuro-muscular docs see you tomorrow and are absolutely wonderful, prompt, and knowledgeable. Keep us informed. You have alot of people on here who care about you.Hang in there.Babette Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 19, 2010 Report Share Posted March 19, 2010 Sweet Erika-You are in the RIGHT place. I am so gratified that they keep testing. I will keep the prayers coming so that you will get a DX and treatment plan fast. Keep the faith & lipstick. You make me laugh through my tears- for you. I wish I could return the favor. I'm sure you could use a good laugh about now . Traveling to Hopkins was the BEST thing I ever did for my sick boy. Locally, we just banged our heads against the wall and watched him grow weaker and thinner day by day. Stay strong. Answers are coming.Hugs to you and your brave daughter. Be sure to tell her how impressed we ALL are with her.Gentle Hugs-Julie Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted March 19, 2010 Author Report Share Posted March 19, 2010 OK...so today was not such a stellar day!The doctor who said she would try to get me into neuro-muscular must have been irritated that my daughter and I stopped by her office after the QSART test. I liked today's tests much better...laying down is my friend! Anyway, the doctor said she would get back to me (via her nurse). I was shaking already..the muscles spasms in my torso like yesterday. I told the nurse I needed some medical advice as I was afraid to fly with the spasms and in the condition I am in. She said to take the Ativan she had prescribed me and even gave me a couple more so I could get to Orlando. I really considered just going to the ER there....but who would take my daughter home. I was/am so ill and I couldn't stay there unattended. But I think we got some good information anyway...POTS is not my problem....it is a symptom of my problem but not the problem. So that is big right?now...however, I keep having spasms and can't walk. I heard once of a girl with something pressing on her spinal column that caused her autonomic symptoms...sure sounds like a possibility for me but they said the MRI was normal of the spinal column...any ideas?I can stand for a short time in the morning or aftr rest. But then my legs start to shake uncontrooalbly and my torso folds over and then it is all over. The spasms are related to standing too long like in the tilt where they didn't let me fall over because I was strapped in so then my body started convulsing...then they put me down. I don't even know where to start tomorrow. I will go to my local neurologist and have to see his nurse practitioner as he is not in but I wasnt to make sure I have something to stop the spasms/convulsions should they start...so scarry.Can an MRI miss anything...or am I missing it...any other ideas from my brrilliant buddies here on the forum? I may even hunt out a neuro-muscular guy tomorrow here in Orlando...I am lost. Looking for input. Should have probably put myself in the ER but I couldn't...it was all too much and I was so hurt that the autonomic doc didn't really follow thru or seem to care that I am barely functioning. What a nite...but I am in my own bed and will get to se my son tomorrow. Erika Quote Link to comment Share on other sites More sharing options...
erik Posted March 19, 2010 Report Share Posted March 19, 2010 I can stand for a short time in the morning or aftr rest. But then my legs start to shake uncontrooalbly and my torso folds over and then it is all over. The spasms are related to standing too long like in the tilt where they didn't let me fall over because I was strapped in so then my body started convulsing...then they put me down.Am I interpreting this correctly that this symptom hits you whether or not you are exerting your legs. In other words, when on a tilt table where they strap you and avoid your having to exert... you still get the same response. If so, then it seems specifically "orthostatic" as opposed to "exertional".A further distinction (beyond tilt) would be "Lower Body Negative Pressure Test"... where you don't even get tilted (therefore, gravity pressing on a nerve/tumor or whatever concern along those lines should not be involved). LBNP is said to replicate the cardiac circumstance of "standing against gravity" without other change... so far as I know. I've read of its use somewhere... if anywhere, it would be Vandy I'd think. Quote Link to comment Share on other sites More sharing options...
ana_22 Posted March 19, 2010 Report Share Posted March 19, 2010 Im glad you have made it home! Did they say why they think this is a secondary problem? im just asking as i get the leg shakes sometimes. Also ive sent you a private message about something i wanted to share with you Quote Link to comment Share on other sites More sharing options...
ana_22 Posted March 19, 2010 Report Share Posted March 19, 2010 In other words, when on a tilt table where they strap you and avoid your having to exert... you still get the same response. If so, then it seems specifically "orthostatic" as opposed to "exertional".When i had my tilt i was on the table but my legs were supported by a ledge thing. so even though i wasn't really exerting them i still they were stll supporting some of my weight so this could be 'exerting' them? Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted March 19, 2010 Author Report Share Posted March 19, 2010 In other words, when on a tilt table where they strap you and avoid your having to exert... you still get the same response. If so, then it seems specifically "orthostatic" as opposed to "exertional".When i had my tilt i was on the table but my legs were supported by a ledge thing. so even though i wasn't really exerting them i still they were stll supporting some of my weight so this could be 'exerting' them?Not quite sure how to answer this. I was standing...I thnk it is orthostatic for sure...my legs were standing tho on a ledge.....the straps just held me from falling. Yes...they are think ing it is a secondardy muscular disorder or some spinal cord compression. Erika Quote Link to comment Share on other sites More sharing options...
janiedelite Posted March 19, 2010 Report Share Posted March 19, 2010 Oh man, you have to go home without knowing what your underlying condition is? I thought that was the whole reason you had to make this trip! Is there ANY way you can get that doc to get you to the neuromuscular people asap? The doc at Vandy has no reason to be irritated... you and your daughter are desperate for answers! I hate to see you go back home after all this. Either way, I hope you can get to the bottom of it soon. You poor thing! Quote Link to comment Share on other sites More sharing options...
goldicedance Posted March 19, 2010 Report Share Posted March 19, 2010 Oh, Ericka......I have been away visiting a sick relative so I haven't had an opportunity to respond.I feel so bad for you. I sure hope you can get some help somewhere. Is there a reason why you didn't go to the Mayo Clinic in Jacksonville. I would suggest that you go to the Mayo's emergency department. That way you can be seen and then referred to the right specialists.As you know I live midway between Orlando and Jax. If there is anything I can do, please email me. Hoping you get some relief.Lois Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted March 20, 2010 Author Report Share Posted March 20, 2010 I know guys .... it is really crazy isn't it? And I still can't really walk!!! I am shaking likeI have Parkinsons. So I went to my neuro today (actually his nurse practitioner as he was off)...he was pissed that I didn't stay at Vandy....I told him they didn't want me. I am so tired of all this. Anyway.....the smart little nurse practitioner said "your mri didshow some spinal narrrowing in your lower spine and neck"....now it isn't that bad...BUT she wants to see a compression MRI..whatever that is. We both agreed that the MRI is taken laying down and my problems are only on standing. Sitting I don't shake usually unless I have to sit upright for any length of time. Standing fails me...shaking etc. So does anyone know about spinal cord compression issues and POTS? I am getting really lost. If I had neuro-muscular probs wouldn't I shake and hae problems all the time....not just on standing? Any ideas................. I think my nuerologist hates me...really I think all these doctors are so sick of me....I am the problem patient. He didn't want the nurse practitioner to do any more testing said I needed to o to Mayo etc. But I just spent $$$$$$ to go to Vandy and got no help. My insurance doesn't pay for Mayo. Erika Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 20, 2010 Report Share Posted March 20, 2010 Hi Erika-Makes sense to have an MRI when you're standing since that's when your symptoms show. I don't even know if that's possible, but maybe a compression MRI is a simulation of that.I can't believe you haven't found any answers yet & Vandy couldn't help you find the underlying problem...Stay strong. I'm sending prayers & hugs-Julie Quote Link to comment Share on other sites More sharing options...
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