erikainorlando

Everything is so weak. My nerve damamge was really started back in 2001 with the GBS..so I always display some abnormalties in an EMG. But numbness and tingling and proufound weakness is what I have found. I have been moved to ORMC in orlando with a great neurologist. But he dioesn't really understand POTS symptoms. But I think he is still trying. He did a spinal tap and said immediately it wasn't Guillain Barre...now I have him looking at pandysatuonomia. I could careless what it is just fix it.! Last nite was the worst....I feel like my body is shutting down. So weak. I woke up at 1:30 am with a horrible sensation...I get these often but that was the worst. Swalloiwing was hard and breathing was labored. Then my body went into spasms. I was shaking unconrollably. I called for the doctor...they kept saying i was anxious. I told them I was anxious but i could stop; the spasms and regain strength I would be more than happy to be less anxioius. Finally they drugged me up with Ativan so it would knock me out......... I was frightened that I called my mom (who said she wouldn't drive at nite) andall my ex-husband ((who says he loves me but told me just to go to sleep last niute). So non of that helped. I was thinking "I am going to die alone in the hospital so they can rest)................. I get so weak even my vocal chords don't work after about 4 minutes use...so I sound like a whipser the time..... All I know i that I am very sick and would love someone to be able to help!! Thsnk

Thank you all so much! Julie - you are so great! I read an article on pandysautonomia. This is me kids...says starts with the autonomic nervous system and then leads to the otherr peripoheral nerves....which is why I can even rise from the bed today. I have made an appointment with a fellow in Jacksonville who sepcializes in variants of GBS. But this is not until March 18..and I could be on life support by that point again. Yes, Julie, they know I had GBS (worst recorded case in Orlando at the time) and POTS diagnosed last year. Now wouldn't you think they would put the two together and start seeing something? I even read about this autonomic variant of GBS on the GBS website forum. Not very common but it is there. You guys give me the courage to keep fighting. I am so tired of fighting. It would seem that all would want to help and comfort me here and see how they could help the woman who was walking well just one week ago...yet...I am now having to prove I am not crazy. I am afraid to ask for pain meds because they will think I am a faker! I promise you I will write a book when this is all over. Without all your support I swear I couldn't go on...my kids are scared..I am scared...I hurt and so weak and disability is fighting me....and now I wonder if I am crazy as well!! After the psych sees me I think my PCP may try to get me to the bigger hospital in Orlando (ORMC) with all the key docs...just a lumbar test ..?? WWow...and I even have insurance...go figure. But they are very ready to send me to rehab...as if that will work to get my strength back... When I had GBS, it took them almost 3 weeks to diagnosis...I did 19 rounds of plasmapherisis...never helped because we got started so late in the game. I just can't believe all of this...next time I want a well know illness if I have to get anything!! I love you all...keep praying..I'll post more tomorrow. Erika

You just can't imagine....the only neurologist at this hospital says the lumbar puncture is not medically necessary as I don't present with Guillain Barre type symptoms. Even tho I can't walk...or lift my leg off the bed. So I will try to transfer to another hospital...but NOW my PCP wants me to have a psychological evaluation!! Just to clear up all ends. I keep crying and crying...I wonder if I am crazy. Why can't I get help? Pandygirl - do you have times where you can't walk etc. ? Thanks, Erika

Julie - You are always so full of good info!! They are going to do a spinal tap on me...soon i think. But do you know if this would show pandysautonomia? The doctors didn't want to even do a spinal because they said it doesn't look like Guillain Barre onset. I told them there are so many variants of GBS...I am no doc but this is crazy! Erika

Hugs to you. Hang in there. Rest and cry and then drink the gatorade! Life is sad sometimes...it means we care and that is a good thing. Erika

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

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...?

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

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

Keep going! Don't let the turkeys get you. I just posted and I wanted you to know that if I had pushed a little more perhaps I wouldn't be unable to move and frightened out of my mind at the prospect of a neuromuscular disease. It is hard telling but we have to believe ourselves. We know when something is wrong but we don't always have help. I was so fed up that I just waited until they dialed 911 on me. I figured it would be like that...I just didn't want another person to tell me it was in my head.

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

Please keep the good stories coming...I thought I was getting to where I could do a few things..so proud, then, well read my post from today. And it happens so quickly. All of a sudden whammy, I am incapasitated or at least today.

And yes...this is new. I had this once last year and spent a week in the hospital...after 3 days of complete rest I was able to walk again. So perhaps it is just being overworked?? Not that I do much:)

Futurehope, I always identify with your posts. I do have those brain-freeze episodes on occasion. But today was the day I acctually stopped walking...walk 15 ft. shaking and collapse. My daughter had to carry me up the stairs tonite...I made it half way and started shaking and couldn't make one more step. It is as if my muscles got so stiff and I couldn't get them to move and I am gasping for air. My kids are in my bed and I am on my floor so they can keep an eye on me. I am also so grateful for all of you. Erika

Not sure but tht is a good thought. My hr is 62 sitting...nice right? So then I stood up and took it and it was 132 instantly..started shakng and had to sit. Took another toprol. At least I don't think it is the GBS...I think this is POTS but I am not sure what all the shaking is aobut..nor the weakness.

BUT can POTS make you unable to move? Legs get stiff can't control movement? Sorry, don't mean to beat a dead horse...but I am lost and the cardiologist on call just called back and had never heard of POTS... E.

Thank you. Not much better being home. Too weak to stand but sitting my hr and bp are fine...lol. Ruekat - do you get to where you can't walk? My mom is coming down...in case I need to go to the hospital. BUT I hate the hospital! I don't want to go unless I collapse completely...even then they don't know how to help me...I always fear Guillain Barre recurrence

OK...not a terrible morning...but I had to go downtown for a meeting and they made me stand for a while. I started shaking..I thought I would be sick..ten when I went to move I could barely move my legs. I got home but am shuffling to walk..and hands shaking so can barely type. Hr is fine. This happened last year..no one had any help..stayed in hospital for a week. Gave me beta blockers...I had Guillain Barre before but I think this is POTS...is this familiar to anyone? Is this typical of POTS?

Yes! It would be helpful. The TTT, while gives me the POTS diagnosis...many doctors think if they can keep my hr down I am ok. And I am way better with my hr controlled...I am by no means fixed. Erika

There is no shame in needing help. I know you probably don't want to disclose too much but I think that you probably are able to do most of your job. You sound hard working and responsible. Employers like that. I would think that if y ou were having a very bad eposide you might need to tell your boss that you were feeling ill and need to lay down for a few minutes. There is no employee that is 100% all the time. If you can do most of your job, then I would try to disclose to someone that at times you get spells and don't feel that well but they pass. If you really can't do your job...any job...I would consider disability because you are truley disabled if you can't work!! Somehow it sounds like you are ashamed of your illness. I have found that if I am honest people respect that and for the most part work with me. I don't work because I can't function for more than 6 hours a day and I would be fired given my limitations. BUT if I could work and just needed some minor accomadations I would ask for help. Good luck. You sound like a great worker and probably are harder on yourself than anyone else. Erika

Thanks...it was not discouraging Kits...just empathetic. And I appreciate it! For me it is not even a decision, truley, I can't handle being upright like that..at all....it is cold hard reality...work one day in the hospital the next...chest pain so severe from forcing myself to function that morphine via a drip was hte only solution. So weak I couldn't walk across the room...I would start to shake and fall over...but I know I don't have to convince you all... I can function if I am able to go very slow and I lay down every few hours....this way I can live but working ...well...it is not even possible. That is what freaks me out...it isn't like it is uncomfortable...it is impossible and it scares me............ Sorry for my bla bla bla...thanks for all your support...you guys are the best.

Great ....do happy for you!!!

I have heard push push push.....but I suppose, my question is that if the nerves are damaged...then how can one improve until they ( the nerves) start to heal? See I think it may be true for some etiologies of POTS but not all. After my Guillain Barre...some yahoo told me if I kept trying to move my toes they would eventually work...it has been 9 years and tons of therapy but they are still paralyzed....my neurolgist had said that if the nerve is damaged...there isn't much you can do but to try to stay conditioned..but the nerve has to heal..is this the same for POTS? I do believe that the worst thing we can do is sit all the time because it will make us worse...but I don't think forcing exercise or standing will always cure us...but I am cretainly not the POTS guru..(working on it tho ) Erika

It is so funny...why would they give you a pain pill if you are already struggling with slow emptying?? I mean they know you are in pain and all but I would think focusing on giving you some relief would be the way to go...but I am only a computer programmer..

I got a good EP at that time!! He knew immediately what it was!! He knew from my holter monitor even before the TTT!! BUT what a pain!! It takes so long to get diagnosed at times...and then even with the proper diagnosis many times there is still no medical respect!! Read my most recent post!