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erikainorlando

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Posts posted by erikainorlando

  1. Right there with ya sister. I have been told so many stupid stupid things about autonomic dysfunction. I have to let it go...otherwise it eats me alive.

    My most recenth was that my POTS was the result of an illness i had 9 years ago...funny I didn't have any POTS systems until after a virus in 2008. Then I was told my neuromuscular problems were psychogenic....................yeah..and htis was by an autonomic specialist. :P

    I have so much nerve damage they can't tell what's what...but in the mean time they are totally invalidating how ill I am. AND then my mom or whoever is with me think i am nuts and just a complainer. :rolleyes:

    I never complained about all the nerve damage from GBS (my illness 9 years ago)...so if I am complaining now...they should really listen! My primary neurologist really listens...he just can't figure out what is wrong. But I traveled many miles to a famous autonomic speecialist....and was really discounted. I can't think of anything worse than hurting as bad as I am and I am sure you are and being discounted or told it is anxiety.

    MY HR WAS 188 when they finally did a holter monitor....after I was told it was anxiety!! :unsure: Well they changed there tune then...

    Sorry but this all hits kind of close to home...I am tired of being discounted with this illness. Proving I am sick. I would love to be well....I lost a job, a relationship, my kids are suffering, I can't compelte my masters program and the list could go on....

    OKAY...enough from me...(hugs)

    Erika

  2. Thank you so much. It just seems like there is so much confusion in these areas. I guess for me as well all my previous nerve damage does color the issue....but I never had autonomimc problems with the Guillain Barre. Even after months laying flat...I just popped up with many other issues but hr and all was fine.

    But do you understand what the diagnositic info means... the latency periods etc.?

  3. OK.

    Does the sweat test indicate autonomic nerve damange?

    The infamous doc I saw blamed all my POTS on the damage I had from Guillain Barre. But I didn't have POTS until 8+ years after the GBS....so I am trying to figure all this out. It was again after a virus and took 5 months to get diagnosed.

    Sweat Test Results: Anormal Study. Response latencies were prolonged in the proximal leg and foot. The response latency was shortened in the distal leg. All response volumes were normal. She adds that this may be consistent with patchy periperal small fiber dysfunction.

    What does this mean??

    Thanks guys!!!

    Erika

  4. :unsure:

    I put some of this in my previous post but thought it might need it's own post...most of you know I went out of state to a specialized autonomic specialty center. I am with holding the name to be polite.

    I don't want to offend anyone who has been helped greatly by the insitituaion if you know the place I am talking about this was just my experience and I went with a lot of complications so this all has to be considered but...

    Results.. I have POTS, mild parasympathetic deficits....abnormal cadiovagal response....whatever that means..

    Abnormal Sweat test. may be consistent with patchy periperal small fiber dysfunction....What does this mean?

    Blood volume Study - plasma levels mildy increased but still normal. Red cell volume mildly decreased but still normal

    Now my biggest concern were my problems walking. I said I had my POTS issues but they were palling in comparision to my recent inability to walk...so her call was that my ambulation issues were said to most likely be psychogenic and I should see a psychiatrist! :( Why would I need to fake anymore illness..I mean really....why..I remember telling them that yes while I struggle with all the POTS flushing, diahrea, chest pain...bla bla bla...I am now really just concerned with this horrible weakness...that was broughtt on by standing too long.

    I am so offended at being called crazy!! Truely I would love to be crazy if it was the problem! I even asked the psychologist in the hospital if I was off or having a conversion disorder....she said "no...you are probably one of the most sane people I know"....you are just sad scared and frsutrated. But now this is on my medical record and I feel like everyone will view me suspicisously.

    Can you believe it!~! So can anyone interpret...can anyone relate....

    Thanks,

    Erika

  5. Thanks guys!! I really apprecieate it.

    I got my notes from Vanderbilt today as well. I don't even know how to interpret them....but basically I have POTS, mild parasympathetic deficits....abnormal cadiovagal response....whateveer that means...oh...and my ambbulation issues were said to most likely be psychogenic and I should see a psychiatrist! :unsure: Why would I need to fake anymore illness..I mean really....why..

    Can you believe it!~!

    How many of you have been called crazy? Gosh......too much!

    Anyway...back to this tremor...any rilation to POTS do you think as it is orthostatic....my GP says yes....probably...my neuromuscular guys says doesn't know but it sure is suspisious.

  6. OK. I have still be struggling to get answers. I saw a neuromuscular guy at Shands and he had no answers for me....I got my hospital records and one even said that my neuro exam was not valid as I changed when I was unobserved................can you believe he insinuated I was faking??? God help me!

    So it is me and God and you all who believe me and are on my side. So I went to another visit today with a local nueromuscular guy..he examined me and almost immediately said it was a movement disorder (altho he will test for neuromuscular). He saw me start to shake like I do after activity (before I go into a full blown spasm)....and said he thinks I am having an orthostatic truncal tremor. I asked if it was related to POTS...he didn't know. He said he hadn't seen a truncal tremor in 15 years!!

    :unsure: go figure.

    Anyway...we may be onto something. See it is always being upright or movement .. has anyone heard of a coorelation? Has anyone heard of a truncal tremor?? He says my walking difficulties are due to problems in the trunk....coordination. So I don't know what all comes first...HR is always very high when I am having difficulties walking...perhaps I am just out on a limb here.

    I know there are brains and support out there...I miss you....and need your input.

    Erika

  7. OK, so now Shands doesn't want to accept me "in patient"...after 1 1/2 weeks of waiting. Can't even believe it. So I guess I am discharged from here....back home and then home health will tell them I am too sick to be home and the circle begins again............................ :(

    Any smart people out there...I mean I know there are...just need ideas..................... :(:blink::unsure:;)

    Thanks,

    Erika

  8. Hi All.

    Julie - how sweet of you to think of me. I am sooo tired of being herre. I am still are still in the hospital. They are still trying to get me into Gainsville which is a teaching hospital very good in this area. My neurologist here knows some folks there and is hoping they can help.

    I have severe spasms/convulsions on any activity. Then there is usually a hold up in getting me medicine...and I lay there and shake and cry for usually 1/2 hour before they get it...sometimes longer. I try to be patient but you can imagine how awful I feel afterwards (let alone during). I can't walk far...and if I do expend this energy I will not be able to walk at all.

    My kids are home for spring break. I am so over all of this....I miss my kids. I miss my life. :unsure: Why is this so unusual? Why is it so hard to treat?

    I'd like to look over my Vandy notes....doc says it says I have POTS but don't know what else to do with me...suggests counseling! They did an MRI and then said that is all the diagnositc tests they can do....??? Isn't there something else we are all missing?

    Sorry...didn't mean to wine....just tired of hospital food...missing my kids...and no answers.

    Erika

  9. Gosh you guys make me laugh!!! And it is good to laugh!! Sent the day vomiting. Back in the hospital in Orlando.

    Monday my visiting nurse said "your spine is swollen and you are shaking badly...get to the hospital". So I went Monday nite and after having something like seizure in the ER waiting for the doc finally got admitted. I keep having these...and they never are prepared. So laugh at this...last nite I had anohter seizure like thing...nurse wanted me to take a pain pill. I told her I couldn't swollow at that time...so she put me on NPO and I had to wait 1 hour to get medicine to stop the shaking!! So this morning they gave me all my meds with t tsps of water and with everything going on I started vomiting...all day. It is crazy!!

    Hospitall neurologist was nice. He had sent me to Vandy. He is calling the autonomic doc at Vandy. I want to go home. I hate this in case you were all wondering.

    MRI looks normal. Everything looks normal but I can't stand without going into severe muscles spasms or seizure....not sure of hte difference. I am conscious but I can't control my movements. Can't walk but laying down I am strong like bull! ??? Why do I get all these weird ones???

    Erik you made me laugh so much. Ex-boyfriend is the least of my probs now I am sure...just jealous that he is happy living his life and I am begging nurses to get me meds to stop my convulsions and praying for a medical test to point out a problem!! Preferably that can be fixed!!!

    The hard part of this kind of illness is the lack of compassion from many who don't think you are really siick. My PCP looks at me like I am just trying to get drugs...and at this point I would take anything that would stop the shaking and make me feel better!!! :rolleyes:

    All the best guys....together we can get thru what we wouldn't ever be able to tolerate alone.

    Erika

  10. Rene-

    You are in my thoughts and prayers. Keep haning in there. There are better days ahead!! I am in the hospital again in Orlando myself...after no real relief at Vandy...they said POTS is secondary for me...and it sounds the same for you....now we just need to figure out and get help...GOD BLESS YOU.

    Erika

  11. Since my return from Vandy I saw my neurologist's pa. She read thru everything and was very worried as she saw me shuffle into office and start spasming.. :angry:

    Anyway, so she is sending me for this compression MRI. She mentioned that my lumbar spine has thinning along with the cervical spine. She said in fact that my loser spine was swollen. I didn't think too much of it but when my visiting nurse came today she also said it had some edema. Later this evening I looked in the mirror and saw it looking bruised along with the swelling. I called the nurse and she said to go to the ER. I of course didn't as I feel ok...my tu\ypical anyway...and my son is sick.

    It makes me wonder what the swelling could be...it also make me think of cerebral spinal fluid. I heard if you are leaking spinal fluid it can make it hard to walk intermittently......does anyibe ave any info on this or anything like cervical spinal stenosis?

    My nose runs all the time too...and yet I am not allergic to anything...so I thought it was vaso motoro rhinitis...now I am rethinking this....

    I am tired of thinking and rethinking....and I want to get well and stay out of the hospital

    Furthermore, my old boyfriend is coming in town this weekend (not to see me...he has family getting married)...and I really thought by this time I would be well and he would think about all he missed out on....now he hears about all my hospital stays and I think he is so happy we broke up.... :blink:

    Just asking.....I walk in the mornings and then as the day progresses I get to not be able to walk at all....if forced to stand I will start to tremor or spasm....body movements out of control. If I recline I am pretty ok...just never really feel well.

    Vandy just said POTS is secondary for me...now I am scrambling and scared....any ideas.................welcomed.

    Love you..Erika

  12. 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. :huh:

    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................. :blink: 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

  13. 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

  14. 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

  15. 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 AFT

    I 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. :rolleyes: 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

  16. 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

  17. 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

  18. Hi all,

    So now I am in Lucernce. I have a great neurologist. But even he has agreed that he is kind of out of his league. He is trying to ge me transferred to Vanderbilt. I have been accepted but they don't have any beds at the moment.

    I am so down guys. My body hurts so much. I have been in the hospital for 3 weeks now. I have been fighting to ge a good nanny for my kids. My mom wants to take over....keeps tellling me how selfish I am and that my kids have been through so much. I know they have and I am doing my best but I don't know how to change all this. I have a nice girl now who takes are of them from 5 pm until the next morning. I have great neighbors that keep an eye on them too. I am in contact with their teachers.

    My ex-husband is yelling at me that i won't have the nanny take my son to baseball. She (the nanny) does enough already!! Why can't he step in an bring him to baseball anyway???

    I went into bad muscle spasms the ohter night and called for my mom and ex-husband to come....neither would come.

    I am afraid...but I have to keep fighting for my kids. But I am sick. Very sick...can't figure out what is going on. Sometimes I think I am making it up.. :blink: it would be easier. I mis my old boyfriend...someone to stroak my hair...tell me it is going to be alright. I want to go back to work...I loved my job.

    Please pray for healing for my family...and that they figure this out...and that I live a long healthy life and get to see y grand-children!! My muscles hurt :P so badly. Then the latest doctor says..."hmmm well now our deconditiooned....but 3 weeks ago I was walking 2 miles using hand wieghts"....

    Love you guys,,,,Erika

  19. Hi All!!

    So I think they are all now in agreement to try to do a hospital to hospital transfer to Vanderbilt. All labs are still pending but I think they know i should be somewhere like that...I will keep you posted...need to start a new thread of my emotional non-well-being-------------------

    Love you all!!!

    Erika

  20. Hey Guys...

    I am so tired of all of this. I am very ill. I can't stand without falling. Any activity, even of speaking with the doctor today left me ill with my o2 down to 92 for a while.

    I had a friend take me to ORMC in Orlando. They did a spinal. Now they said that the protein wasn't elevated but they are going to look for pandysautonomia...apparentlly it is a different test of the CSF.

    They did a EMG...said the results are terrible but we have to try to figure out what is terrible...I have had signigicant nerve damamge from GBS so what is new and what isn't.

    I am scared from the spasm I had the other night. My mom is angry with me...says I am demanding too much of her time and she has other obligations. I wonoder if she would just like to push me out into the middle of the road and a truck could hit me and this would all be over.

    I am so happy to have you all. I also think this neurologist is trying. I personally would just start IVIG and go from there but he is probably going to send me to Shands...or Mayo.

    I want to be home with my kids. It wasn't perfect but I had a least learned what I could do and couldn't. I would rest, do stuff, rest, do stuff...

    I also have horrible sensations after I try any activity....I can't explain the sensation. Does anyone else get this? It goes away when I stop moving and rest....rest....rest...

    I will write more tomorrow. Thank you all so much. :rolleyes: Lieze - I am going to call the chaplin...power of prayer. I believe. What a great girl you are for suggesting it.

    I love you all,

    Erika

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