erikainorlando Posted February 26, 2010 Report Share Posted February 26, 2010 OK....so you all saw my recent post about being unable to move my legs. So I was very bad Tuesday morning and went to see my neurologist...I couldn't even get out of the car. My daughter drove me. The second my neuro saw me she said she was dialing 911. So off I am to the hospital as I couldn't walk two feet. So I sit in the hospital over at the beach because that is where they take me. They said that it was not a recurrence of Guillain Barre. But they were almost ready to put me back on the ventilator. I was going downhill so fast. Couldn't even talk. Their neuro said it looks neuromuscular. So I was transferred to an Orlando hospital. I had an episode like this last year pre-POTS diagnosis and was told that POTS was causing my hr to go so high my body was stopping me in it's tracks...no it is not so clear. Seems more like the neuromuscular problem might be causing my body to struggle so much on standing and movement that that is the real problem. I will know more after they do some more tests. For the moment I can't stand at all...let alone walk. Ihave visoins of ALS dancing in my head...I know I should relax and just try to wait for the tests and then a definate path. I am so angry that all this time I have been so weak and just blaming it on POTS. I have had such muscle pain and I blame it on POTS. I am frightened...I am way to young to not be albe to go to the bathroom by myself! I have a potty chair next to my bed here in the hospital and the bed is alarmed so that I don't even try to get out and go by myself. Does anyone have any insight or experience or words to calm me down??? I love you guys.Erika Quote Link to comment Share on other sites More sharing options...
erickamcc0523 Posted February 26, 2010 Report Share Posted February 26, 2010 I don't know what to say right now, except that I am praying for you, and for the doctors to figure out what is going on. Quote Link to comment Share on other sites More sharing options...
babettess Posted February 26, 2010 Report Share Posted February 26, 2010 Sending gentle hugs and prayers your way. Try to relax and remember you went through this once before. You are in the right place for the doctors to figure out what is wrong.Please keep us updated on how you are doing. Babette Quote Link to comment Share on other sites More sharing options...
janiedelite Posted February 26, 2010 Report Share Posted February 26, 2010 Erika, I don't have any wisdom that can alleviate your fears. But I said a prayer for you, that you would be comforted and that the docs would get to the bottom of this asap! Sending hugs! Quote Link to comment Share on other sites More sharing options...
DYSarray Posted February 26, 2010 Report Share Posted February 26, 2010 Erika,I know it is scary and I don't know if this helps or not but I have issues like this and sometimes it is worse than others. I have a power chair for when it is bad. When I told my neuro that I didn't understand how the dysautonomia could affect my ability to move he explained it to me. I wish my brain wasn't foggy right now I so I could repeat what he told me but I am kind of dumb right now. My neuro is a neuromuscular disease specialist by the way. I guess what I am trying to say is there are ways in which dysautonomia can interfere with skeletal muscle movements and when this happens it isn't always due to another underlying disease like ALS or something else. I have been tested for every obscure, rare, scary, and bizarre neuromuscular disease out there and those tests have all come back clear. Some tests I have had done more than once. I have another neuromuscular appointment next Tuesday. I will ask him to write down what he told me before so I can remember it all. I know it doesn't make the problem go away to know why my body does this, but it let me have a lot less anxiety after the tests came back negative and he explained it to me. I wish the best for you.Lori Quote Link to comment Share on other sites More sharing options...
Elenapap11 Posted February 26, 2010 Report Share Posted February 26, 2010 My dear Ericka.I just read your latest posts-i had no idea you were going through all that lately.If there is anything i can do to help(like ask doctors here in Greece for your issues or anything else)please let me know.For now i am sending you all my love and positive thoughts for getting better.You are a fighter as we all are- so concentrate on winning this battle too.I hope we'll soon read about your getting betterLots of loveElena Quote Link to comment Share on other sites More sharing options...
firewatcher Posted February 26, 2010 Report Share Posted February 26, 2010 Ericka,Whatever it is, they will find it! You have a doctor who cares and has put you in a place where they will find out! Fear feeds on itself, if you let it, it will make you incapable of rational thought. Hope for the best, prepare for the worst and go on from there. Look at the worst case scenario rationally and see what your options are. You have a lot of people here praying for you and sending positive thoughts your way! Keep us posted!((((((((((((((((gentle, supporting hug!)))))))))))))))))Jennifer Quote Link to comment Share on other sites More sharing options...
juliegee Posted February 26, 2010 Report Share Posted February 26, 2010 ((((((((((ERICKA))))))))))I am praying that this will lead you to help that will bring you to an even higher level of functioning. Gentle Hugs-Julie Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 26, 2010 Report Share Posted February 26, 2010 Thinking of you and definitely update us! Quote Link to comment Share on other sites More sharing options...
yogini Posted February 26, 2010 Report Share Posted February 26, 2010 I am so glad your doc took you seriously. Hope you are getting good care and lots of tests to figure things out. Maybe they can call Mayo or something for guidance. Keep us posted. Quote Link to comment Share on other sites More sharing options...
lauralulu Posted February 26, 2010 Report Share Posted February 26, 2010 I'm sorry that you're going through such a scary time! Just wanted to send good wishes xx Quote Link to comment Share on other sites More sharing options...
iheartcats Posted February 26, 2010 Report Share Posted February 26, 2010 Sending you good vibes. I'm so sad it had to come to such a severe set of symptoms to get the attention you deserve medically, but understand how that goes. *hugs* Quote Link to comment Share on other sites More sharing options...
erik Posted February 26, 2010 Report Share Posted February 26, 2010 Hoping they can get to the bottom of it quickly and get you some relief & improvement. Sometimes things get worse before they get better. You're long over due for some good luck. Let's hope someone can turn it around and help for real, ASAP. Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted February 26, 2010 Report Share Posted February 26, 2010 Honey, you are in my prayers and thoughts! Please keep us updated when you can. It's ok to be scared. I am glad that you are in the hospital though. I send you big hugs!~ Michelle (Broken_Shell) Quote Link to comment Share on other sites More sharing options...
Maxine Posted February 27, 2010 Report Share Posted February 27, 2010 I'm glad your doctor is taking you seriously, and seems to be trying to help you.PRAYING FOR YOU!Keep positive thoughts. Maxine :0) Quote Link to comment Share on other sites More sharing options...
potsgirl Posted February 27, 2010 Report Share Posted February 27, 2010 Erika,I'm thinking of you, and you're in my prayers. Please let us know what you find out, and keep calm. Everything will work out in the end...Best Wishes,Jana Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted February 27, 2010 Author Report Share Posted February 27, 2010 Hi my dear friends,I am waiting ...more waiting. Feet are getting more numbness and tingling. Weaker and weaker. The neurologist at this hospital is insisting on doing his own MRI. So we are delayed another day. He doesn't think it is Guillain Barre so he doesn't want to do a spinal tap yet. He says I have hyper-reflexes rather than diminished. I think they should do it all. A muscle biopsy...perhaps. But I am only the patient. I am getting more and more frightened. I feel so bad for my kids. I would love to go home! I feel awful...but I have felt awful for so long...My speech seems slurred. Just some answers would be great. I would like to just be well!! OK...sorry for all the whining. I appreciate so much all your thoughts and prayers. I will let you know after the doc lets me know something else. Thanks again for all the support. Erika Quote Link to comment Share on other sites More sharing options...
futurehope Posted February 27, 2010 Report Share Posted February 27, 2010 Ericka,It seems that waiting for answers is so difficult. I am sorry you are going through this, and I want you to know that your well-being, both emotional and physical, are on my mind. I pray the doctors have wisdom so that they can figure out what is going on and give you the help you need, as soon as possible.I eagerly await your news. I'm praying for you. You will be getting answers soon. Quote Link to comment Share on other sites More sharing options...
Rene S. Posted February 27, 2010 Report Share Posted February 27, 2010 Erika, sending you warm wishes and hugs and prayers your way. Wishing you all the best. With love,Rene Quote Link to comment Share on other sites More sharing options...
babettess Posted February 28, 2010 Report Share Posted February 28, 2010 Hi Erica,I'm so glad you were able to give us an update. Hang in there. Hugs and prayers,Babette Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted March 1, 2010 Author Report Share Posted March 1, 2010 It has been a long weekend. Still in hospital. I have been so ill. I can't support my body weight. I can for a few minutes after long periods of rest. I literally stop moving and fall over.The doctors are so confused. Is this at all a symptom of POTS. They keep saying it is not related to the autonomic nervous system. But after periods of rest I can move a little. So it makes me suspect....otherwise I would be thinking Guillain Barre again...but it doesn't seem to be like that. It is almsost as if a neurootransmitter or something gets locked and too much on any movement and then I am really stuck. Legs and trunk muscles don't work. It took 2 nurses to get me to the bathroom. After 3 hours of rest I walked by myself..but only about 2 feet. Has anyone ever heard of this? Also, I read about a dysautonomia variant of GBS....any ideas? You all are my resources!!Thanks,Erika Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted March 1, 2010 Author Report Share Posted March 1, 2010 Now I insisted that they do orthostatic vitals because they took my toprol away. So sitting hr is 67...standing we are at 140. Does this shed any light on the subject? Obvioulsy I have dysautonomia/pots but severe weakness??? Unable to funciton weakness...? Quote Link to comment Share on other sites More sharing options...
potsgirl Posted March 1, 2010 Report Share Posted March 1, 2010 This is way out there, but it sounds like a form of MS or some kind of neurological problem where your body is not receiving the right commands....Have them do an MRI or a CT scan of your brain. They're suspecting I might have MS or amyloidosis, and I have similar issues. POTS can be secondary to a disease, remember, and not just a primary issue. Good luck, keep in touch! Quote Link to comment Share on other sites More sharing options...
futurehope Posted March 1, 2010 Report Share Posted March 1, 2010 mitochondrial disease (actually, I have no idea??)Praying for you.......((((((HUGS))))))) Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted March 1, 2010 Author Report Share Posted March 1, 2010 Yes....my daughter and I are guessing it is secondary in my case. I have never heard of anyone's reaction .... almost paraylzed from movement...Jana - when you say you have similair issues do you get to the point I am at? They did an MRI and so no brain..ha ha...just keeping it light. But seriously they didn't see any abnormal findings. Keep praying guys...they will decide where to send me tomorrow. Saturday they came in with a list of nuring homes for me....I said I will not go!Erika Quote Link to comment Share on other sites More sharing options...
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