mngirl

I was in the hospital Friday-Monday. They gave me 3 round of treatments. I got about a 6-month dosage in 3 days. I did get some major chest pain out of the deal...but on Monday when I got out, I actually felt good...no dizzy spells! I could even not take my medication to just eat! Tuesday was the BEST day I have had in 3 years. I didn't have ONE dizzy spell, I could eat, it was perfect. I thought that I had hit the jackpot! Then Wednesday morning I woke up nauseated...I took my meds...the dizzies were still okay. Then at lunch I had one dizzy spell. I thought, big deal, I can handle ONE spell. Then about a half hour later....boom, boom, boom, they just started hitting me. Then from that moment on, it was as if I hadn't done anything. Today I went in to talk with my Dr. He thinks we are on the right track, he just thinks that we need a more constant dose...so I will start to get weekly (smaller) treatments. Then we will see if this helps. If it does, LIFE WILL BE BEAUTIFUL!!!!! We still need to get the chest pain under control...it is so bad I am taking Nitro constantly...it's the only thing that helps it. He adjusted my Midodrine and Nadolol today (lowered it), to see if that would reduce the pain. If not, then he is going to set up a Barium swallow to determine if this is a espohogial spasm or if there is something else we should be worried about. I hate the thought of this. My neurologist wants to Botox my espoghus to calm it down. I am just afraid that that isn't going to be it. We'll see. I have until Thursday. If the med adjustment doesn't work, he is setting up the test and possibly the shots. Anyway...I just want to say, that I think that we are onto something...I just wish that it had longer lasting effects. I'll let you know what happens this next week and if the weekly treatments are any better. Good luck to you all! Lisa

I think that it has and has not helped. I don't have that constant lightheadedness feeling. I also am able to stand food without the help of the meds. But...right now I have a MAJOR headache that is not allowing me to do a THING!! I can barely keep my eyes open. And I feel incredibly warm. We are going to give it a few weeks and see what happens. It hasn't done anthing for the chest pain...if anything, I think it made it worse. It am on nitro all the time to get it to stop. That is the ONLY thing that helps that. My dr thinks that maybe it is a espoghogial spasm. I am not sure that it what it is...so we wait. If I am feeling like this in the morning, my doc is getting a call. Keep your fingers crossed that this helps...even a little. I will take even the little relief it provides. If anyone has any questions about it, let me know and I will see what I can answer. ~Lisa

Yes, and I do have it. I was diagnosis that BEFORE being diagnosed with POTS. Need any info? ~Lisa

I saw Dr Fealey...he was the one that diagnosed my POTS...He diagnosed it for me while I was in the hospital for another medical problem and then the POTS really hit, so they ambulanced me to Mayo. I saw his resident more than I saw him while in the hospital. But I did have a follow-up appointment with him about 6 weeks later. I honestly have to say that I haven't been back since. And this is why...We went into the appt with 3 pages of questions about POTS. When we tried to ask, what I felt were VERY valid questions, he made it seem like they were dumb things to be asking. He truly made me feel like I was ignorant, which I was about POTS. My meds still needed to be adjusted and he told me that I would have to live the way I was...things would work out. He recommends Pedialyte, not Gaterade...he says that Gatorade is just a bunch of sugar...you need the sodium and some other things in Pedialyte. He also prescribed me compression stockings that didn't help me enough either. He also told me to start exercising, even though I could barely stand up. It was like he thought I was faking not being able to stand. I left there knowing I wouldn't ever see him again. He sent me back to my home with the instructions to go to physical therapy for 6 weeks and then get back to living. I did go home and things were not getting any better...so I started seeing my Internal Medicine doctor who has been AWRSOME. Even though he didn't know much about POTS, he has put in TONS and I mean TONS of time researching all this. He has even gone so far as to call a dozen other doctors to see what we can do about treatment. We have adjusted my meds constantly but my body finds away around them...then we tweak it again. I sure hope that your experience will be much better...and maybe we just caught him on a bad day. I just think that the man is so smart that he can't come down to the patients level and be caring enough to make you feel and understand what this disease is all about. Let me know how your appointment goes. If you have a good experience, maybe I will give him a try again with a follow-up appointment. But I truly LOVE my current doc. Without him I would be in the loony bin. Good Luck! Lisa

I JUST posted about this. I am going to give it a try as long as my insurance approves it. I guess it is insanely expensive. My doc thinks that this can really help. He states that he thinks by hitting it with a large dose, we could fix it all. He found some research and a patient was completly cure with one weekly treatment...her problems were gone PERMANTLY! I will give ANYTHING a try at this point. Let me know if you are going to try it too! ~Lisa

Well, things just seem to be getting worse and my doc is trying to help me find ANYTHING to help. So, we are going to try an IVIG treatment. I am waiting for my insurance to approve it. It is a MAJORLY expensive for a small treatment (just 50mg evey six weeks)...my doc is going to give me a HUGE dose (600mg in 5 days). I guess it takes thousands of people to get just one dose and it takes about a year to produce that. My doc is hoping that this treatment helps set things back in place. My dizziness. lightheadedness and vision problems are getting worse. Just when you think you have them under control with medication, it starts getting worse. My doc thinks that my body is finding a way to fight through the medication...then it take more to fix it...we are at the highest doses I can take on a lot of my meds...so...maybe this will work. I will let you know. I was just wondering if anyone else has had a treatment like this and what the results were. I haven't posted in a long time and haven't had time to read much of the posts...I hope eveyone is doing okay. ~Lisa

My doc put me on an immunosuporessant a week and a half ago, and it seems to already have helped a little. The dizzies don't seem to be too bad all the time. But they are getting REALLY bad when I get warm. It is starting to get nice out, and we have been outside. And being outside I am getting warm from the sun. As soon as I start to feel warm, the dizziness and lightheadedness start and just get worse. To the point I feel like I am going to pass out. What is causing this? I don't remember this being so bad last summer. I think that this has all ben getting worse over the past year, so maybe that is it. Maybe partailly due to the meds? If it is just the POTS, can someone explain to me why this happens? TIA! Lisa

I asked him if there were any concerns about taking this and he said no, that this med isn't a strong as some others. But the stuff you read online really doesn't make it sound very good. The dizzies, the hot flashes, the vision problems, the eatting problems...they are all getting worse. If this works, this is supposed to help tame it down. If it does work, then my doc is going to put me on a stronger immunosuppressant. If it doesn't work, then the next step is he is going to put me in the hospital and take away all my meds and start all over to see what I really need to take....like hitting the reset button. He is afraid though that taking me off it, my body won't accept it once I need to go back on it. It is a little bit of a risk. But it would be a 2 week or longer hospital stay. Just what I don't need right now. He said that he may be recommending permanent total disability and taking me off of work. Work comp is being stupid too. They are likely going to deny a treatment that is the only one that has been working for me. If I dont have these treatments, I can't work. So, you would think that they would approve the treatment so I can continue to work without pain. He said that he talked with some other docs (neuros) about all this to see what their recommendation was to do. He said that he had a patient who can't walk very far or falls over....this one doc actually said put her in a wheelchair and have her learn to live with it! My doc wasn't satisfied with that answer. I think I scared my doc today....He came into the office and sat downI told him today that I was done, that I couldn't do this anymore. That I was going to flip out on him. He actually got up out of the chair and went to closed the door. I held it together though in order to discuss what to do with him. He said that he is grasping at straws and that I should know that he is just trying things at this point. I told him to try away since I can't live like this anymore. Something has to change. It is just going to be easier to get sick. With 2 boys that is going to be hard to stay clean and healthy. MY oldest has a cold right now...I guess I just need to continually make sure that I stay sanitized. Well...that is where I am at in all this. Hopefully this helps and doesn't cause other problems. Thanks for listening! ~Lisa

Unfortunately the vision problems were before I wallpapered...it is just getting worse as the days go on. I get to see my dr. tomorrow to see what he has heard from other docs. Hopefully, something. There has to be hope somewhere, right? I think that my counselor is just going to LOVE me this week. I think I am really going to need those relaxation techniques soon before I crack. I am truly trying to stay positive through all this, I am just REALLY scared that I will completely lose my sight. If I had one sense I REALLY didn't want to lose it would be that one. I couldn't see my boys grow up...that would be a killer. I'll let you know what m dr says tomorrow, or doesn't say. I am getting some trigger point injections too. Those have been awfully painful lately too. He says that it is REALLY tight. I guess we need to make sure that I do not go past that 6 week mark for my Botox injections. Amazing how those work! Something that at least works...can't give up that! Thanks for all the prayers....they are defintely needed, although I am sure that others are in a harder place right now. ~Lisa

After last week with my issues with the wallpapering and stuff, I was having issues with my vision. The blurriness would come and go. Over this past week, it is now permanently blurry and I have to MAJORLY concentrate to see anything...which then causes MAJOR headaches. I talked with my dr yesterday about it and he said that things are looking bad. A relaxed eye should comfortably see at an arms distance. I can't see anything up close or anything away from me either. We determined that my relaxed vision distance is about 40 ft which my dr says is really bad and tells him that my eyes are VERY messed up. He sated that going to an eye dr. is not going to do anything for me since no lens is going to be able to fix this. Basically I have to hope that this does not get any worse, if it does I won't have my vision any more. And now when I try to walk AT ALL I am having issues. Now after standing for 2-3 minutes, I start to sweat, get lightheaded, get dizzy and then almost pass out. Before this was only once in an outing if I were walking for 30 or more. Now it is ALL the time. We can't figure out what the deal is. We figure that I am heading for a bad period again and this is just the start. The issue is that after every bad period, everything stays a little worse. My dr said that he is going to make some more phone calls by Thurs to see if any drs out there can help with this vision issue and the others that are happening. I am very close to not being able to work anymore. If this vision stuff gets ANY worse, I'll be done. I just can't handle the strain. I am luckily that I am a good typer and can get by that way so far. I just can't be on the computer and straining y eyes from more than a few minutes...the headaches are awful too. I'll let you know if my dr comes up with anything...hopefully he has some good news for me on Thursday. Crossing my fingers! ~Lisa

It only took me 3 hrs to do, but I paid for it all day Sunday with being physically sick ALL DAY! If I got up to move even to go from one room to another, I started to sweat, then got lightheaded, then the nausea kicked in BIG TIME! It was awful. The bade part as well, I have had nerve issues in my right arm...well doing this only made it extremely painful. I was supposed to have a lidocaine infusion this past Monday, but we got 12 inches of snow overnight so the clinic called and cancelled my appt. I couldn't get an infusion until yesterday. My dr. also put me back on Lyrica to see if we could settle the pain with this new nerve med. I tried this back in Oct - I stopped eating for 3 weeks and then ended up in the hospital for 16 days. I took it for 2 nights (Tues and Wed) and I am alreaady having issues with eating. So, my dr. had me stop it already until Monday to see if I can get around the side effects at all. I am so afriad that I am not going to be able to handle this med. Back in Oct. it at least seemed like it was working even though I couldn't eat. Now I just can't handle the med. Which seems to be the case with a lot of stuff lately. I am afriad that my body is starting to fight everything or else it can't take it. Anyway...I just can't believe how my body reacted on Sunday. And then I have been exhausted all week. My dr. said that my body just can't do these things anymore. How sad is that? My work comp case at work is coming to a head too. They are stating that I am maximum medical improvement and are trying to have my restrictions set. That means that they could choose to accept and accomodate the restrictions or give me 90 days and let me go. If they do I have to find a new job, or aI can ask them to send me back to work. With my arm restrictions and all this POTS stuff, who is going to hire me? I can't type foe very long, can't lift, can't stand for any period of time or walk for very long. What in the heck am I supposed to take up as a career? I am going to apply for SSD. I am sure that at this stage of the game I will be rejected. But I think that if I lose my job I would qualify. I have this POTS stuff, Addison's and RSD or both my right and left arm as well as in my neck/head/shoulder. All of which cause me to be into the dr 3 times a week for some sort of treatment. Luckily that my dr. and I get along so well. At least he doesn't think I am crazy and he is trying to help me figure this all out and make sure that work and insurance companies pay for treatment and don't jerk me around. He is an awesome dr. I can't imagine ever losing him as my dr. Anyway...I am still feeling crappy...It just seems as if everything is slowly getting worse. ~Lisa

Well, I made it today with the visionj issues - it is not getting any better, it actually seems worse. I am afraid that I am going to have to stop driving so as to not put myself or anyone else in danger. Anyway...My Dr. took me off the Requip for last nights dose and today it didn't make any difference. So I was able to talk with my doc today...it was a tough talk to have... He said that he talked with a Neurologist at another clinic (one who is doing research on POTS) to get his feedback. I have seeen this doc before - last March when they were testing me for Addison's he came in and gave me a occipital nerve block (for a severe nerve pain issue)...I din't particulary care for him then either, but this seals my opinion on him... My doc asked what there was to do for a patient (he didn't tell him who I was, otherwise this doc would know what to say) that had dizziness issues, visions problems, eating issues, chest pain/pressure, fatigue, etc. - This neurologist told him that he was dealing with someone with a severe autonomic dysfunction. MY doc said, that was what I thought, what would you suggest as a treatment plan? Would you put them on Prednisone, Lamictal, Mifodrine, etc....basically rattled off a number of medications that I am on...This doc said "No way...I would never put them on any of that." My doc asked what he would do for that type of patient then...his answer: "I would try to teach them how to live with it, how to function with the issues, some counseling...and have them come back in 3 months and see how they are dealing with it" !!!!!!!!! Can you believe this? Although I shouldn't be too suprised, that is kinda the answer I got from the neurologist at Mayo (and why I haven't gone back to him since the recheck after I was diagnosed)... My doc couldn't believe it - this doc wouldn't try anything to make it better! I know that there is no cure, but come on, try something to help the patient! So....Here is the hard part of the conversation...we talked about the visions issues...my doc said that there is NOTHING he can so for that...an eye appt wouldn't do anything. He said that if they look into my eyes, things are going to look normal...they wouldn be able to test for the autonomic function of the eye properly - and then there isn't anything they would be able to do. That answers *****...Then we talked about all the problems as a whole. On MOnday he put me on Requip, he thought yesterday that it may be making the vision issues worse, so yesterday I din't take my dose - it didn't make today. So, we are going to up the dose and see if a larger dose may help. He is hoping that it will help with the vision, with the eating, with the dizzies. But he said that he honestly doesn't know what to do anymore. I was so close to tears, you could hear it in my voice, but I was able to hold it back...I told him that if this is the way that I have to live, especially with this vision issue, I won't make it very long. He said that we are back to the autoimmune suppressant medication try. For some reason my body is just making things more worse each day. I can't imagine what it is going to be like at the end of this year at this rate. He said that he wouldn't be looking at puting me on a deadl dose...but one that is going to have some repercussions to it. He thinks that knocking the autoimmune process down that it may settle all the symptoms down. I told him that I can't do this anymore...I am willing to try ANYTHING at this point. I am 32...I have to try to find SOMETHING that can allow me to live...I know that it will never be NORMAL, but at least liveable. So, we are giving the upped dose of Requip until Monday...if things have not changed, then FOR SURE we are going to try the autoimmune suppressants. My doc looked so defeated today. I felt it. Today the real realization of it never getting any better set in. I have to say that I am lucky I have a counseling appt tomorrow because I've had it. My husband and my 2 little boys are what gets me by...without them...I can't imagine. We found out yesterday that my husband is getting a promotion at work - with it comes a pay raise, we have yet to know how much...but this may allow me to apply for disability and not put our family in finanical distress. And with what he said today, it makes it more evident that I should start applying now. Maybe I can at least only work 1/2 time. If this gets worse, there is no way I am going to be able to work. It's hard to admit that...This is just NOT FAIR! I know that I am not dying and others have a lot more sucky life...I am just having a pity me moment...I'll stop now. ARGGHHH....I am just do frustrated. Thanks for listening...let's hope that one of these things work...or at least provide a little relief. ~Lisa

He had given me this for restless leg syndrome when I was in the hospital - it worked great - and it is also used for Parkinson's - and now we are going to try it to settle the dizzies that came back, the vision issues and the not being able to sleep. The hope is that it relaxes the system down enough to cause all these problems. We are going to try this for the next 3 days and then decide more on Thursday. At least this will take care of the restless leg when it hits. When I get it it is SO AWFUL. You can't control the shaking legs - I have to bouce them while sitting. It brings me to tears it is so bad. The vision problem just won't get any better. I am just waiting to wake up and not be able to see at all. I can't stand it when all I see is blur. I have had pretty decent vision up until the past few years. I have bifocals, but mainly for reading and for the computer - and now I am just having issues seeing anything. I hate it! The thing is...I had Requip in the hospital...I've lost days while in the hospital - and we are not sure if it was due to this med or not. The side effecets are syncope - which is what we are trying to settle down - it also can cause symptomatic hypotension and hallucinations - just what I need, eh? I just hope that it just works and I don't have these side effects - I am sure work would LOVE me to be hallucinating while working. I bet I could make some VERY interesting yellow page ads feeling that way. OKAY - Let's just hope this works. I am staying on the Zyprexa too - only 2.5 mg for now though. At 5 mg the sugar cracvings were just too much. I gained back a lot of the weight I lost due to the eating issue. I am not eating a lot now either but it is bad weight, due to all the sugar I have been taking in. Keep your fingers crossed! ~Lisa

He said that he needs to give it some thought and research this weekend. He said that he doesn't take it lightly to prescribe either of these meds. I told him that this past week and brought back my vision issues, but they are worse for some reason. I am getting to the point of blacking out. RIght now everything just totally blurred and I can make out a shape, no detail. I am so afraid that this is going to happen while driving. He said that this is another autonomic problem rearing its head. Add that to the dizzies, and not eating (and if I do it is only sweets and salts)...I am starting to build up a good list of things that are not fuctioning very well. I am not sure which Parkinson's med he was thinking about, I wish I would have asked and written it down. Things is is that he said that this tends to cause dizziness in patients. And he hesitated beccause he thinks that it my make my dizziness 100 worse, definitley not what I need at this point. I feel like all we are doing is treating the side effects and not the problem...I am not sure that is even possible. I did come across a study that I am going to inquire about. It is about Tests to Evaluate Primary Chronic Autonomic Failure. I am not sure if I fit into this anywhere, but I am going to have my doc look at it. I've got to try something. He backed off my prednisone (from 10mg twice a day to just 10MG in the a.m.) So far I think that I need to put it back to where it was. I think that is why the dizzies hav gotten worse. I feel completely wiped about at 6 p.m. too. I stopped the Zyprexa and started back on the Lunesta. We have decided that we need to find 3 sleeping meds and will work and rotate them every 3 days so my body doesn't have time to adjust to it and make it not work. My body LOVES to find ways to get emds not to work. It is doing such a good job that we are to the end of a lot of med lists - and guess what - insurance doesn't want to cover those meds! Go figure. I have to say that I am a little glad to be off the Zyprexa - I have been eatin (which was good), but eating sugar and salt - bad. I have gained about 10 of the 16lbs back, but it has all been to wating the crap - not good weight to be adding back. This is one reason we stopped it. Hopefully it stop the cravings for the sugar. So...there is life. We are going to talk on Monday to see which med I am going to go on. If the visions tuff continues I think that he is also thinking about another MRI since it has been a year since the last one. Just to make sure that there is nothing there. I was a little concerned when he said Parkinsons because I have relly developed the tremors lately too...hoping that was just due to the Zyprexa. I have been off that for a coupld of days now and the tremors are actually worse...withdrawl? It's not like I was taking a bunch of it 5 mg at night - then went down to 2.5 mg and now nothing. How long should it take to get out of your system? SO many questions, no answers....I'll let you know what he says on Monday. Thanks for listening... ~Lisa

He was supposed to come into my infusion to talk with me, but because he was out all last week he had a lot of appointments. So after my infusion I sat in the waiting room for 45 mintues. Then I was on the phone with DH and my doc came walking out and jestured at me to come back...then he stuck his tongue out at me, LOL...I told him that wasn't very nice to be doing to a patient, and his response "Well, look at the patient I am doing it to!" LOL, what a doc eh? I have to say that I am at least happy that we have that relationship...he won't BS me. So, we had a good 45 minute conversation about all that is going on. It was nice that he took that time and was in no rush to get me out of there. We listed out all the issues...the list just seems to get longer each time. The bad thing that seems to be happening is that in the past we would only ever have to deal with a few of the conditions at a time because the others would seem to be under control. Now it is starting to be all of them acting up. My arm is under control with the infusions. My head/neck is actually doing good with doing the Botox injections. My POTS - acting up - I am getting light-headed a lot more recently - almost passed out in the shower a few times. My Addison's - acting up - things just aren't healing well. Sleep - getting very little - the sleeping pills I was taking don't work anymore - that was the reason for the Zyrexa - we'll that is causing a bunch of side effects that are horrible. Not Eating - Before he thought that this was due to my meds - now he doesn't think that anymore - he thinks that this has become a whole issue on its own - an autonomic issue - unfortunately that means it is not going to get any better, only worse. If it does then we are going to have to look at alternative ways to fix it - none of which I want to do. Chest pain - He thinks it is pericardities (inflammed of the sac around the heart). This he says is hard to get rid of. And the bad thing is that I have tried the meds to try to reduce the inflammation and it doesn't want to work. The med that worked in the past - Vioxx and Celebrex - they can't prescribe anymore. So it hurts to breath - I can't do anything physical because it makes it worse. I can't even walk on my new treadmill yet! That *****. We are adjusting a bunch of meds this week and we are going to talk again on Thursday. Then we are going to start the autoimmune supressant meds. Really not what I want to do right now. There is a MAJOR flu outbreak around here. One school had over 50 cases the past few days - to the point they closed school to stop it from spreading. Yesterday duringmy infusion there was an older lady in there that I had to listen to her throwing up for over an hour! I was gagging I couldn't stand listening to it. They aren't sure if it was due to her chemo treatment or the flu (their bet). I had to go to the bathroom SO BAD, but she had been in there and they hadn't disinfected it. I didn't want to touch anything she had, that is all I need - the flu. That would certainly put me in the hospital at this point. I so hope my kids don't get it and bring it home. But today my vision started to go goofy. I was looking at my computer and then everything went completely blurry - I couldn't see anything. I was concerned that I wasn't going to be able to drive home. I am getting these blurry blips on my vision and then things get more blurry. I feel like I am losing my vision. I feel like if I go to bed tonight I won't be able to see in the morning. I had something like this happen this past summer, but then it went away...now it is back. I am having issues with distance even. Figuring depth is very hard. The med change shouldn't have taken effect yet, so that can't be it. I am a little concerned. I have another infusion on Thurs, but I am not sure that I can wait to talk to my doc until. I think that if this is like this tomorrow I am going to have to go in or at least call the office and see what I should do. SO, that's that...my doc thinks that all these issues are autonomic problems which are next to impossible to fix. It sounds like this is how life is going to be. How unfair (just taking a pity me moment...) ~Lisa

My doc put me on Zyprexa last Thursday to try to help me get some sleep. Well, last week Monday my BP was 182/65, but I thought that was due to me bein upset because they didn't have me on the calendar for the bioposy I had to have....Thursday my BP was normal for me 105/55 or so. I have felt off since I started taking the Zyprexa. I have the shakes, my words are not coming out the way I want them, my brain is a little foggy, my grip strength fades as I hold on to something...just odd stuff. Well, today I had an infusion and my BP was in the 150s up to 175/80s...I am on beta blockers, so this shouldn't get this high. I can't imagine how high it would be without the beta blocker. The Zyprexa is the only thing that changed lately. But last Monday my BP was high and I hadn't started the Zyprexa yet. Of course, my doc is out until next Monday and the doc that I would see in place of him said today that he doesn't want to mess with any of my medications and he wants me to wait until my doc comes back next week. He said that my BP won't hurt me until he comes back. The only thing is is that my chest starts to hurt and it is tough to take in a breath. Should I be concerned? What do you think that it could be from? I just don't get it. For a week, this should be okay, right? I have another infusion on Friday, and that should give me an idea if this is sticking around for some reason. Any thoughts? ~Lisa

Well, I finally had my biopsy done on Wednesday. I told him about the fact that Novacaine doens't really work with me. He said that was what he was going to numb my tummy with to take the sample. He shot it in and BOY DID THAT KILL!!! Then he started cutting...I went through the roof. I told him to stop and that I could feel exactly where the scapel was. He said that I shouldn't be able to feel it. He said we needed to put more novacaine in. If it was supposed to be numb, I shouldn't have been able to feel it right? He stuck the needle and all I could do was let the tears fall. Luckily I had a really good nurse who let me hold her hand We let it sit for a while before he tried cutting again. When he started I couldn't feel it. But by the time he was puting in the stitches I could feel it. And 10 minutes later while out in the waiting room the novacaine was GONE! They said that it would take at least a week before the test results would be there. Now I have an inch and a half incision just to the right a a little below my belly button. It bleed so bad under the skin that I have a HUGE bruise. And the incision just keeps burning. I am so afriad that he hit some nerves that are going to remain super sensitive like the one in my arm that I am having treatment for. Anyway...the test results came back on Thursday...he put a rush on it because we wanted to know the results asap. The test was negative for amylodosis!!! YYIIIPPPEEEE!!!! So then I asked him what do we do now and we are back to the solution of going on the autoimmune supressants. He says that he thinks I need the high doses of steriods and that the amount he feels I need to be on is too dangerous to be on for a long time. So, next week I will start the autoimmune spressants. We wanted to wait until this incision has time to heal without getting infected. My tummy is swollen all the way across. I told my doc on Thurs that my blood pressure was 182/65 on MOnday - he couldn't believe it since I have been having issues just getting it to 100/50! Where that came from who knows. I was wondering if that was why I am having these chest issues. Maybe my blood pressure is fluxuating too much during the day. Usually when they take it I am sitting in my infusion chair, being relaxed. I wonder how it does over the course of a day. I think that I get so stressed out that maybe it is up that high more than we know. Does anyone know if that can test that over the day? We are still trying to figure out the non-eating issue. I am now down 16 pounds and had to go buy new jeans! I went from a 14 to a very comfortable 10! Nice diet, eh? He also put me on Zyprexa to help me get to sleep. I think that it is causing some unwanted side effects though. My dizzy issues weren't so bad as of late and since Thurs night I am having some issues. And I seem to have lost some of my hand grip strength. I can't seem to hold on to stuff very easily. And then on top of that I am awfully shaky. Anyone experience this? And since it is used for mental issues...maybe I am getting some additional benefits from it Somedays I do think I need something to straighten me out. So...that's life for now. I hope that next week brings some better days. TIA ~Lisa

I now have a 1 1/2 inch incision, a bunch of stitches and a HUGE bruise...my belly is swollen and I just hurt. It was AWFUL. I told the surgeon that novacaine does not work well with my body...and what did they use? Novacaine! He injected it into my tummy...which BURNED! And then he started cutting - I COULD FEEL IT, I started yelling. I could tell where the scapel was! He had to stop and inject it AGAIN with MORE novacaine. That hurt even more! Then he let it sit for a while longer and then started cutting again. He got a good chunk of subcutaneous fat - more than I thought he was going to take. Then the novacaine was wearing off so quickly I started to feel him put in the stitches. By the time I left and made it to Walgreens it had all worn off and I was a hurting unit. He told me to stay on IBpro. for the next days to try to stay pain free. I am worried about infection and everything, especially with my Addison's. He said that they have to send the sample off to Mayo Clinic or somewhere in South Dakota since this is a rare test. He thinks that it will be more than a week before I have any answers. The bad thins is that the incision is just a little right and below my belly button - right along my waistband. Not a good place...but the only place that I had any real fat to take from. Oh well...at least it is over...they didn't let my husband in during the procedure, but at least I had a great nurse who was willing to hold my squeezing hand. I wouldn't have made it without her! Now it is another waiting game...Let's just hope that the test comes back negative. I don't want to have this. ~Lisa

I just don't think that there is any way they CAN fire me...I am protected both by my work comp claim, which is the reason for me being out 98% of the time and I use my FMLA or vacation time for the hospitalizations. They have no case against me otherwise. The thing is too...then my boss goes on to say that I have wasted talent and that if my health issues would go away that I might have a chance at a better position. But that don't happen as long as I have these health issues...and to me that is where the discrimination comes in. I CAN DO THE JOB...and I have proven that I can do it on less hours than the normal person. Funny thing is that the person in the position before me was always running up to the deadlines...it took the full 40 hour week to get items complete...I do it in 30... I think that my work knows better...if they want to try to fire me, they certainly won't like what I would have to dish out. They would know they are in the wrong. I know that they have thought about it though...the work comp insurance rep is working hard at that one for them. Well...I wrote my response. I think that it sounds pretty good...not mean or anything....just laying it out there...making sure that my dependability and dedication is not in question. I will make sure that this makes it to my file! It just makes me so mad that I worked so hard for them over the past year when I felt so amazingly crappy and this is the type of review I get. I can't even believe that he can sleep at night stating such things. AARRGGHHH...management.... ~Lisa

I have been in the hospital 3 times this past year...last March for 14 days (that was when they diagnosed my POTS), then again in Oct...another issue possibly due to POTS and then again in Nov...PLUSA...I am out about 8 hours a week to go to infusion treatments for my arm, due to a WORK COMP issue. So in my review, he stated that I needed to be more dependable and reliable! I was told that I need to hunt him down to tell him that I am going to be out (even though I was VERY sick in the hospital)! I got docked because when I was in the hospital, there was a customer request deadline that went by...I didn't remember while in the hospital (never mind about this time the crash team was being called into my hospital room...oh, but I am supposed to tell him!)...He had to do it and missed the deadline (which was not a MAJOR issue)...but it was noted that I MISSED THE DEADLINE DUE TO HIM HAVING TO DO IT!!!! ISn't there something wrong with this? I met EVERY GOAL set by them while working basically 3/4 to 2/3 time! I think that states I am awfully reliable and dependable, don't you think? I was told that then I should have asked for more projects! ARGGHHH!!! I was told that until all this health stuff changes, my next review is probably going to look exactly the same! I just don't get how they can do this. Yes, I am happy to have a job...but this is ridiculous. Due to my work comp issue, I was under restrictions by my doc...I couldn't lift more than a certain amount. So...work had to get additional help...I was docked because they had to do that! My fault....never mind that they put me in this situation. I had a different job and then they changed the jobs on me that required them to have to hire the intern. How do I get docked for that? I am SO FRUSTRATED!!! I thought that there was something that states they can't base my review on such things? Well...I am going to write my comments back...not that they will mean anything. I just want to make sure that it makes it to my record. ~Lisa

I have to say thank you for easing my mind about this. I wasn't sure how bad it was going to be. Visions of all things bad run through my head. Sad thing is is that I don't have lots of fat in my tummy anymore...I haven't really ate much since Christmas. The whole test just doesn't sound pleasant. I'll let you all know how it goes. I have an infusion tomorrow AND on Thursday. My doc said that he would have the pathologist scheduled one of those days I come in to do it. So, I will be a little surprised as to when it is going to be. Although that may be a good idea not to know. Otherwise I think that I will just sit there and wonder. BTW - I am in MN. I was just reading about the center at Mayo. So, if this test comes back positive, I guess I know where I am headed. They diagnosed me with my POTS this past March, so I have a neurologist there, although I don't care for him AT ALL. But anyway...let's hope that this test comes back negative. This is a problem that I REALLY DON'T need, not that anyone needs any...but this does not sound good. Thanks again for easing my nerves...I hope it is as painless as you said. ~Lisa

We have decided to wait on taking the autoimmune suppressant medication until we have tested for this. I have to say that I am a little scared of having this biopsy done. A needle in the stomach, they push in some fluid and pull it back out. Then they look for a certain protein. My dr. had to find a pathologist who could do the test. He talked with one at the hospital and he said, "I only perform that on dead people! TAlk with this other doc." Can you believe that! So, he talked with the other doc who said that he can do it. So, this week when I go in for an infusion, they are going to have me see this pathologist for the test. My dr was on call 2 weekends ago and was thinking of my case, so he spent it doing some research on what could be causing some of the problems I am having. He came across amyloidosis and talked with another doc about it. Many symptoms of this match exactly, as do many other diseases, but it is something we defintely need to cross off the list. Amyloidosis is something VERY BAD to have. The outlook is awful. Cross your fingers that this test comes out negative. 2 weekends ago, I started to have some major chest pressure/pain. By that Sunday night I was about to head into the ER. I know that it is not a heart attack, but I couldn't breathe. I saw my doc on Monday afternoon and he ended up giving me a good shot of Toradol. This helped for the evening, and then on Tuesday it started back up again. I started to feel a little rumble in my chest, but I didn't have a fever or cough. I wasn't so bad in the morning, but as the day went on it got worse. By bedtime I could barely take in any air. On Thurs, I had another infusion. But the chest pain/pressure was still bad. My doc wasn't going to stop in that day until I started having problems during my infusion. As my treatment was going, my pulse-ox started to drop from 99 down to the low 80s. The nurses said that it was the machine....but I started to feel dizzy and it was getting harder to breathe. So, they told me to take some deep breaths and to cough. Sure enough, it started to go back up and the nurse said "It IS you!" Then they got REALLY concerned and called my doc to ask if they should put me on oxygen. My doc said that he would be right over (he was on hospital duty last week and not in the office." But he came to see me! My levels just kept dropping, so we had to turn down the rate of my treatment. I told him that I was still having the chest issues and the new rumbles. I told him that there were at least 4 sick people at work and that I was afraid I was going to get something. He checked me out and said that I had a chest infection. But since I am on the Prednisone that I wouldn't ever present a fever and it also supresses the cough. He said that totally explains why the chest pain was so bad and how I was feeling each day. He said that we shouldn't mess around and he put me on antibiotics. He told me that if I got a fever at all this weekend, that I was REALLY BADLY sick and needed to get into Urgent Care or the hospital. So far so good with no fever. But yesterday morning I wasn't feeling too bad, so my family and I decided to talk a little walk on the snow paths through a local park. While I was out there, we went slow and I didn't feel too bad. And then we got in the van to go home, and it hit me HARD. I got SO DIZZY and the chest pain was unbearable. We got home and all I could do was go to bed. I couldn't breathe and once again thought I needed to head to the ER. Last night I actually even thought I WAS having a heart attack since I was getting shooting pains. Today the chest pressure is still there and comes and goes with AWFUL bouts. I think that he is going to have to do some tests to make sure that there isn't something more going on. I just feel like my heart isn't working well. I had my heart checked out the week after getting out of the hospital when they diagnosed me with POTS...At that time my chest pain was awful too, but different from what I am feeling now. I think that pain was due to the MAJOR changes in my heartrate. The tests they did then came back fine. It has been about a year and I am thinking that they need to check again, especially with me feeling like this. Anyway...I just wanted to know if anyone has heard of amyloidosis and if anyone is experiencing this MAJOR chest pain/pressure? TIA. Lisa

POTS & Addison's - Yep, I have tested positive for both. Both through the Mayo Clinic in MN. ~Lisa

So...Here it is...and I am still going to look into this even more, but at this point I do think that this makes total sense to me... Here is a little background about my docs: The issue behind all this is that I have been to the U of MN (and they stated they would do the EXACT same thing as my dr is doing for treatment) and I have also been to the Mayo Clinic (in MN) and I have a Neurologist there (Dr. Fealey). But I have to say that I will not go back to see him again as I felt as though I wasn't allowed to ask the questions I asked. Even though I felt they were VERY valid questions to ask about POTS. Som I am not going back to him (that is why I then headed to the U of MN). MY dr here in town has done a LOT of research on all this and has also consulted with a locol neurologist who is doing research on POTS. Well, I have upped my prednisone dose this past week from 2.5 mg in the a.m. and 2.5 mg in the p.m. to 10 mg for both doses. My dr thought that if this made my system start to feel better, we were on to something. It did. Overall I started to feel better, although the eating is STILL an issue. I also stopped the Digoxin on Tuesday with hopes that it would bring my pulse up from the 40s up to something normal. For some reason stopping that med made NO difference at all. So, I went from the high 80s/90s down to the 40s and now being off the meds it is staying there. During my infusion yesterday, it kep dropping from about 48/49 down to 42/43. CAn't figure out why, that med should be out of my system by now. I am having some major chest pressure just from my heart TRYING to keep going. With the fact that I did start to overall feel better, my doc thinks that we may be headed the right direction by increasing the prednisone dosage. The issue here is that the doses that seem to be working are too high to stay on over time. He is having me up it even more - up to 20mg in the a.m. and 10mg in the p.m. - with hopes that this will help with the chest pain/pressure. To get away from these high doses or prednisone he says that there are other medications that are autoimmune suppresants that can replace the prednisone without the same bad effects of the prednisone. Here is how he explained what he believes happened to me, since this all seemed to just start one day in February 2003: I was pregnant and had my son in August of '02. About 6 months later, it all started on Saturday, February 1st (amazing that I can pin point it to a day, eh?). He described pregnancy as your body developing a tumor, which happens to be a child. Your bodies immune system does supress itself somewhat so it does not attack the fetus. Once you give birth, your system will should correct itself and go back to normal. HOWEVER...my system overshot it self and went too far. Now, my immune system is trying to kill off everything else and overreact...therefore the Addison's and causes the issues related to the POTS. What we need to do is bring the immune system down to a level where it is not trying to do all that stuff. Unforuately my adrenal glands are already shot...To do this we have decided that we would start an immune suppressant such as that they give people with Lupus or severe rheumatoid arthritis. So, not to the extreme as that for the organ transplant patients. I asked him all the questions I could think of...I asked about the possibilty of getting sick easily. He said that people can live normal lives, they do have to watch out who they come into contact with. He said to defintely avoid someone who is outright sick. If I would start to feel sick or to get a fever, I would have to get into the doc asap at which point they would give me a high dose of prednisone, have me take prednisone for a period of time and also place me on antibiotics. I asked him if these drugs premanently suppress your system. They do not. It is drug induced. He said that it will take about 3 weeks for my body to supress my system, since my body is really going to fight this. However, should we decide to stop this for whatever reason, once off the meds, my bodies immune system would jump back up to where it is now pretty fast in comparison...roughly a weeks time. I would have to also take medication to make sure that it does not start thinning by bones...but he said that would only have to be a once a month drug dose. There are some other side effects to the meds that all meds seem to have...so it will be a closely watched treatment. I am into the doc twice a week at least at this point for my infusions. And he stops in to see me during each treatment, so I have the chance to talk with him. We will be doing blood tests through out to make sure that nothing else is going on or that we are not destroying anything else. I asked him about the not eating issue and he says that he believes that this is the Gastroparesis that someone was talking about the other day. He believes that this treatment plan should help correct this. And if not, then we have to go to places he doesn't want to...meaning pacemakers, etc. But he thinks this is going to correct itself with this program. Luckily the dizziness has been under control lately, so that is one less thing to worry about. When I do get dizzy it is defintely from the low pulse and it dropping to the low 40s and it had gotten into the 30s. But for the past week, it hasn't been too bad. So...we are going to try the increased prednisone dosage, and if this makes things even better over the weekend, then on Monday we are going to start the other medication. If this were not a reversible treatment, I wouldn't do it. I have been research online and have found what he states about the meds is true and that this is done more than anyone thinks. Now we have to figure out what the deal with the low heart rate is and why it is staying so low after stopping that other medication. My heartrate is either too high or too low. Finding the middle ground seems impossible. Well, that is the deal...do you think that this makes sense (it does to me)...or do you think that I am totalling missing something here? ~Lisa in MN

Well, I went in for my infusion yesterday, still unable to eat anything...I started to get chest pains and it was getting hard to breathe again so I asked the nurse if we could slow it down in the beginning until I see how it goes. Well...They havenow moved my infusions from the Internal Medicine dept to Onocology, so now I get to sit with everyone that is getting chemo treatments done. A little depressing and also the chairs SUCK for having to sit in them ALL afternoon. Now I have a WHOLE NEW group of nurses that have NEVER done these type of infusions before. So, instead of just saying, okay that's fine (like the other group would have said and just did), she said that she needed to get my doctors approval and him to write orders to that effect...okay, at this time it was NOON! What if my doc wasn't in? She wasn't going to let me do the infusion! She takes off in search for him... Luckily, she comes walking in with him in tow. He sat down and I told him all that happened over Christmas. He told me to stop one of the meds I had just started taking about 3-4 weeks ago. He isn't sure if that is the cause or not...my bet...not. Then he really didn't say too much more and then stood up with the nurse and wrote the order for a smaller dose and at a slower rate...I could have done that! At that time I also asked him to write a refill on my pain meds. He said, okay. Well, I didn't see him walk out, but he did WITHOUT writing my new prescription. So I asked the nurse a little bit later about the script. She said that she would run over to his nurse and let her know. Usually then his nurse just gets him to write it and then brings it over. Well, this time my doc came back! Then he sat down again. So I am thinking that that was intentional because he needed to go and look something up... We started talking about what happened again and he said that we need to change the way we are attacking this whole situation. He thinks that what I have been having over the past 3 months are MAJOR flare ups of whatever is going on in my system. He thinks that my system is attacking itself and this is the result of all that. With that theory in hand I asked him then what do we need to do. He said "well, I was hoping we would NEVER have to go down this road, but I think we are there." Not a good start to the conversation. With my body attacking itself and with my Addison's on top of all this, we have to knock down my immune system to allow my body to somewhat function. What that means is that for the next few days I am doing a high dose of my prednisone (a steriod) and if things start to get better as Friday comes then we know that more has to be done. But, you DO NOT want to stay on high doses of Prednisone for very long as it starts to cause kidney and liver damage. So...and here is the part that really scares me...I would have to start being on the same medication that they give to organ transplant patients in order for their body to not reject the organs. Basically totally knocking out whatever immune system I have...to nothing. I asked him...Don't those people who take this med get sick VERY easily because they don't have an immune system and he response: "Yes, they get sick very easily and that is the concern and why I haven't done this yet." I said that didn't sound very good and what are the chances of me getting sick...and he response was "there is a very good chance, that is why I haven't done this yet." He said that if what is going on is flare ups, then what I need to do is to avoid those and try to keep my body at somewhat of an even keel. If I don't do this, then the rest of my life is going to be cycles of being in the hospital and feeling somewhat decent. If this is what we are going to do, and we are going to decide this on Friday, then coming into contact with ANYONE who has ANYTHING could cause some MAJOR issues, especially since I have Addison's Disease and already have organs that don't allow me to fix myself. I had to take this stuff about 6 years ago when I got Lymes Disease. I was told NOT to leave the house for the 2 weeks I was on it just because of what it doesn to you. Then I knew it would be over in 2 weeks...but this could be forever! My boys get sick SO MUCH...I can't imagine what it would do to me. A bubble will probably be the safest place for me to live! At this point, this is my ONLY option. He said he doesn't know what to do otherwise. My body is trying to shut itself off...and at this point it is starting to win. I am totally scared about all of this. What it is going to do to me. How it is going to effect my life with my family. We do SO MUCH stuff outside the house when we can, that I can't imagine not being able to get out because there is a cold strain going through town. I am at a TOTAL loss today. I just keep thinking about this and I just can't handle it. I explained this to my DH last night and I just don't think he really gets the whole impact of all this. He is flying to Florida tomorrow morning until Saturday, so he can't even go with me on Friday to talk with my doc. Well...that's it. It may not sound too awful to any of you, but this is a HUGE decision to make. Which way do you prefer to live is what it comes down to...Sucky choices don't you think? What would you all do? TIA~ Lisa