Be calm and tell your doctor about your concerns. He may have a reason he is testing you the way he is. You'll never know unless you discuss it with him.

Please update us on your appointment

Hi guys, I got back from testing around 11:30 am today. The tech just did a renal ultrasound and a doppler of my renal arteries. On another board a friend I talk with tells me that I have classic symptoms of a clot and that I should talk with my doctor about it. She said it can be serious. I am having a lot of blood tests done and they seem to be for a lot of thyroid and adrenal gland cancer. Im just scared. I just feel like running away and never coming back. But I guess we are a cizilized society now and the flight or fight syndrome has to be the fight one for right now. So I will keep pushin on. Although I have been doing this for more than 5 years now. Actually 11 years ago was when my health issues started. I am just tired I really am. I am 44 years old and have hardly been out of this house for years. The sun and the heat kill me and since I live in the heart of Texas (literally, I live in Georgetown right up from Austin and if you look at a Texas map you will see that Georgetown is smack dab in the exact middle of TX) we do not have nice coastal breezes like I am used to in in my hometown of Victoria, we have toasty oven heat with no breezes despite being in tthe Hill Country. We are at a disadavantage because we live in a small dip in the hills and so --- no breeze and no good rain either.

Anyway, thank you for every thing. I really am thinking of going out of my mind. Then they could stick me in a nice nursing home where I could play with the puppies and look at the pretty fish and not have to bother with this stuff. You guys take care, I know you have more going on than me and I must seem selfish but I am scared thats all.

I too am wondering how things came out for you, I hope at least it was a productive appointment. I don't want you to think that we're uninterested in you in this group. In fact, I had intended to respond to your first post but I've been feeling really bad myself this week and I honestly didn't have anything to say I thought would be useful to you. Actually, you mentioned so many things I wasn't even sure what half of it was about, but I am concerned about you, it seems reasonable considering swelling on one side to consider DVT a possibility. As to fibromuscular dysplasia and PAD, I know absolutely nothing about those. I hope you were able to take TNT's advice and discuss all of your concerns with your doctor, you obviously know a lot more about what you have going on, and it goes far beyond my knowledge which is pretty much confined to DVT and pulmonary embolism.

I hope all went well and you are on your way to getting some answers!

I'm trying to piece this together. Does your doctor suspect a DVT? If you feel you have symptoms, have your brought up to your doctor?

Also, is the blood work you're having done to test for certain cancers or to test if you have a thyroid or adrenal gland condition of some sort?

You don't need to apologize for reaching out. I'm just not sure what kind of advice to provide. Im sorry youre going through this.

Hi Mommy and rmb, Well, I am a major research freak so last night i googled and googled until I found some examples of ultrasounds and especially the doppler versions, which I really paid attention to while having the proceducure. Anyway, from what I am getting is that the tech was putting in the numbers from 50--53 where it said "RI". I found out that "RI" means Renal Index and its basically a computation of the numbers that show how much your renal arteries are blocked. I guess its kinda like when you talk about someone with arthereosclerosis you would say, (this is kinda sad)--"Oh my dad died at 49 from a massive heart attack, He was 97%, 99% and 100% blocked" Well that meant that my dad, who being the old hippie he was, never went to doctors because he did not believe in them. Well he paid the ultimate price, he left a new wife of only 5 1/2 years, a beautiful little girl of only 4 1/2 years and me his other daughter of 25 years who had just started connecting with him in a huge way. So I go to the doctor for just about everything. Unfortunately I am pretty sick but at least I am finding everything out and trying to stay well for my kids.
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On the lupus board the people there who are in flairs often dont have the energy to get out of bed or they just sit on the couch and watch TV or read. I am pretty sure I have lupus because I am continually being tested for it and actually some of this stuff kinda plays into it. I think plaque can cause DVT right? Well supposedly lupus people get arthereosclerosis at a pretty young age and it comes on real fast. Maybe my dad had lupus, he always had rashes and often felt tired and ill. I know my uncle has that special RA of the spinal column. Both my grandma's had RA and we have lots of other little autoimmune disorders, not to mention family members with clots that had to be treated with Coumadin (seems like the drug of choice for my family).

TossnTurn, I did call my doctors office and they explained the testing to me. They said they are going through elimination process right now. They hope to narrow it down soon. More procedures and blood, urinalysis probably on the horizon but thats ok as long as I know they are caring enough to want me to do them. I am thinking of going to some sort of autoimmune clinic where they will test me specifically with special tests for several autoimmune disorders. I am sick of being tested for RA over and over and not being able to get a dx until the RA factor hits 30. That is so ridiculous. I could be being treated with a biologic or at least plaquenel (which would also help lupus) if they would be a little more caring. This drug does not hurt people and with my numbers like they are it would only help me.

Well I better run, I am on a mission today of calling doctors and getting numbers and getting facts and getting new appts. Wish me luck ladies and I wish you continued luck. Dont be afraid because from what I have read about DVT you are able to live a nice full life. Medical miracles and miracle drugs. Thank God for research and research money. Take care and i will speak with all of you later!! Thank you again!!

You're not being selfish at all, and I'm sorry that we haven't been able to provide you with more help. It just seems like you're dealing with a lot of things at once, and of course we'd like to help, but at least my way of thinking is that your doctor is who is familiar with your entire situation is the best person to be able to make the right decisions for testing and so forth. However, that's not to say that we shouldn't question what our doctors are doing and why, many of us here have suffered ill effects of doctors overlooking sometimes very obvious symptoms of DVT or PE (my doctors certainly did), so sometimes we do need to push on certain things. In any case, you mentioned that a friend on another group told you you had classic symptoms of a clot - what is that person's experience with clotting that made them think that? Now, I don't remember exactly what symptoms you mentioned - I know you had mentioned pain and swelling and I think sores too. Just to give you a little info on those things, it's true that swelling, especially more to one side than the other is a DVT symptom, and it's certainly something to consider. But if you're having kidney issues, that could also be contributing to swelling as well, so it's just hard to say for certain. The sores I tend to think would be very unlikely to have any relation to DVT, as those are usually more a problems which people experience long-term after having had DVT as they experience poor circulation after and the sores form. These sores could also be something tied to kidney problems as well, for instance diabetics often get them as well. So again, things just really go back to you having to be clear with your doctor about the things which are your concerns, and then he can look at the entirety of your situation and know best what things need tested and which no.

Were you able to ask the doctor why he ordered an arterial doppler? What are they looking for? An arterial doppler would not be for DVT, which is deep VEIN thrombosis, though possibly he's looking for arterial thrombosis. If you think you have carotid artery involvemente, again, that's arterial not venous, so he could be looking to see if there is indication of other arterial clotting. I'm just kind of throwing out ideas, again you mentioned a lot of things that are really outside of my experience.

Still, this is just throwing out some ideas and I don't know that it would be helpful at all, but in another post you mentioned having had Eptein-Barr awhile ago and it sounded like you were quite sick with it. I too was very sick with that, it started out at a mono diagnosis but I had a lot of organ involvement and stayed sick for over a year and they said I had chronic Epstein-Barr. Fortunately I saw a doctor out of the country who was finally able to get my symptoms to calm down, but my body hasn't been the same since. So remembering some of the information I had found at that time and noticing that you are a member of the lupus group as well, I did look up a little more information to see if there could be any clotting links. And actually, there could be. I read (if you want the reference I'll have to find it again - I read this last evening) that in addition to the more commonly known autoimmune diseases (such as lupus) which are sometimes triggered by epstein-barr, when the virus is recurrently active and continues to be symptomatic over long periods of time (such as your case and mine) sometimes it triggers Antiphospholipid Syndrome which is a blood clotting disorder and can cause both arterial and venous clotting, so to me as a non-medical person, it seems like if you are suspecting clotting problems there could be a basis in your medical history to indicate problems. The thing with DVTs is really most anyone can be at risk, so if a person has symptoms it should certainly not be ignored, and if you feel that the doctor is ignoring the symptoms then find another who will take things further, unless that doctor can give you a really good explanation as to why they don't think that's what you have and can confidently give you another explanation of the symptoms.

I am very, very sorry with your health situation. I have been fighting with my health on some level for the past five years since I had mono, though the topper has certainly been the last two because I've been trying to recover from massive PE from which I nearly died. For the last two years I have also felt that I spend far too much time in my house because the weather has a very definite affect on how I feel. I am by no means confined to it, but my life is far from what I consider normal too, and I understand that frustration. I feel bad for you and I wish I could do something to better help.

I hope that you get some kind of solutions soon and can begin feeling better.

Sarah

Sorry I hadn't seen your last post - I was writing this in between mommy stuff this morning.

Just another little side note after reading that - the antiphospholipid syndrome also does run in families, which I mention due to your reference of a strong family history of clotting. I may be wrong here, and hopefully someone will correct me if I'm wrong, but I thought that plaque was more the cause of arterial clots, not venous clots. The clots do tend to form differently in the different types of vessels. Prior to getting DVT I never had any idea blood was so complicated as it is, just the clotting process itself is incredible.

Please don't take this the wrong way, but just one tiny word of caution. I imagine you meant it with the best of intentions about not worrying as sufferers of DVTs because we can have a full life. That is true for most, but it isn't true for everyone. The three people who have responded here to your post are also all of us multiple-clotters who have also experienced pulmonary embolism, which takes things to a whole different level regarding our state of health post-PE. I do feel like I have a good life, but it's far from what I wish it were and I deal with frustration most every day trying to make myself better. Except for a 'miracle medicine' (clot busters) which saved my life, there's no magic cure for me, and I have been left with permanent damage to both my heart and lungs, besides the mess which is my entire vascular system from pelvis to foot. Not much fun. We are all also permanently on medication which carries risks of its own, requires lifestyle changes, as well as has many side effects. There are people who have "just" had DVT who are really disabled from the damage and deal with severe limits on their mobility and ability to lead normal lives. I don't say this to take away from anything which lupus sufferers go through, I know that's a horrible disease and in fact I have a friend who is currently dying from it. My point is just to say that DVT isn't exactly a minor thing either, pulmonary embolism (considered a complication of DVT) is a leading cause of death, and many of us who do survive must deal with lifelong difficulty resulting from it. Just to give you a better understanding of it. As with many things, there are different severities of DVT, not all situations are the same.

Hope all your research goes well!

Hi Irishrooster, take a deep breath and keep talking to us. Doing research helps, too. The more educated you are on your disease process the better armed you are. I'm on this post as my husband is the person with DVT and PE. I'm a nurse but it doesn't make me less concerned. Sometimes having a body of knowledge can make it far worse, as you always look further into a problem and play the doctor yourself.
Your doing all you can do and your where you need to be....with all of us, sharing, discussing and not being judged. Please keep us posted.

No, I don't think plaque causes DVTs. I could be wrong but I think that's more about arterial veins. Your leg symptoms don't sound necessarily classic DVT to me. I mean, I 'm not a doctor and certainly people have had clots that aren't classic. My DVT in my calf was classic but my DVT in my arm wasn't at all. But I think Sarah is correct in that the leg symptoms you describe could be related to other things. But if you truly think you have a DVT, it's not something to dismiss as it can be serious business and potentially life threatening. If you have symptoms, your doctor should be all over that.

Autoimmune diseases can be really tricky to diagnose and they can take years. There's the situation you describe where you keep getting normal results but you have all the symptoms. I know people whose test results show that they have normal thyroid function but yet, their thyroid is completely out of whack. Autoimmune diseases can also be very complicated and affect people differently. I have ulcerative colitis and it causes joint pain for me. I mean, you wouldn't think that with something that affects your colon but the inflammation affects my whole body not just my gut. Others with the disease don't experience that at all. Also, my inflammation markers are always normal, even when I'm in a full blown flare up experiencing inflammation. So, I know you're frustrated. It's just so hard to pin point stuff some times.

Yeah, just be careful with all the research because sometimes, it's too much of a good thing and I really believe it can start to have an emotional and psychological effect and it's easy to get lost in it and lose perspective. Sort of a black hole. That's not good either.

Wow guys!! You are all such empathetic people!! I will answer each one of you personally because, dammit, you each one deserve it!

Sarah,

Thank you for your long reply. It is very nice of you. I always write long posts and replys but that is just me. In college they want you to turn in one blue book, I always turned in two totally filled up blue books. My professors always sighed when I gave them my books!! Hey I always made "A's"!! Anyway, back to what you had to say. I am sorry that I said that about you guys living long happy lives. I am just so afraid of a DVT, PAD, or CAD myself that I tend to "pretend" everything will be all right. Hence my reply to you guys that things will be all right. You know how it is: scared, denial, and numbness. All I know is I have one leg that is swollen up and the other leg is not. It does hurt, but it hurts in my thigh area..bad.

My friend on lupus that commented on clots also has the antiphospholipid thing. She has been sick with just about everything all her life. You should see her. She looks so frail and ethereal, like an angel on earth. She is very brave, just like you guys. But, like many of you she has faced death and she has won. I have noticed that people who have almost or actually died (my mom has actually died 3 times--she has green cat looking eyes and we tease her and tell her she better be careful cuz she only has 4 lives left!!). Anyway, I am trying to do research on that angle as well. There is so much I do not know about my family history. I just found out that my Uncle had lymphadema which caused his legs to swell up real bad, supposedly it is VERY heriditary. So I guess thats another avenue to explore. I am trying to gather up as much info as I can about my family and symptoms so I can give it all to my nephrologist. He seems like he really cares.

I am so very sorry that you suffered from EBV for so long. I thought 3 months was a long time!! Well the repercussions are still going on but at least I dont have the constant flu feeling. I really do feel for you. I feel like EBV kinda ruined my life. I spent 2 years working towards a EC-4th grade teaching certificate and was finally doing my student teaching in a kindergarten class. Well that was when I found out I had EBV. The doctors told me to quit teaching but I couldnt. It was the critical part of my training. Well, I almost fainted one day in class and that was that. My director took me out due to medical issues and I had to wait another year to do student teaching again. But you know, it went on my record and I know it makes me look bad. As many teachers will tell you "yeah, we have time off and we have subs....but teachers are not supposed to get sick". Now I am trying to get into a medical assistant program that basically has the same creed. Thats why I am so desperately trying to get well. Plus we have this creep living next door to us who we think is schizo affective bipolar (remember I am bipolar so I have absolutely no prejudice against the mentally ill) and he will not get diagnosed. He seems to be obsessed with me and is telling my husband he hears me outside on the porch talking on the phone about him---bad stuff. He says he goes to the fence and says that he hears he and I am being rude but I run into the house. Well the days he told my husband I was doing this I was at my moms house 135 miles away!!! Plus he told my husband that he saw me sitting on the front porch chair naked, just talking to him like that. I dont think my husband has ever seen me naked since the lights are always off!!! I know my mom or sister has not seen me naked. We were raised extremely modest. So my husband wants to get away from him. He is scared he will do something because it is escalating.
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Our house is such a dump it will probably take us 3 yrs to fix it up enough to sell it and then how are we to save for a down payment? So you see I really need to work. I need to be completely well so I can have lots of energy and be able to volunteer at the childrens hospital in the oncology ward where I am hoping they will let me do an internship. That way eventually I cna work 3rd shift and they get paid really good. Anyway, sorry to get off the subject. I am just stressed about this situation and so much else! I am so surprised stress has not literally killed me yet. I am not joking about that. I have had more than my share of stress.

So Sarah, I want to thank you for all you had to offer. I will go back to your post and take notes of your suggestions and ideas. I am on the second page now and I already tried to go back one time and look at what you wrote and it erased my comment. You are very sweet and I will keep you in my prayers.

Hi Lucille, I think it is great that you love your husband so much that you come here to find out info for him. I remember when you wrote about sitting in the hot tub and you talked about being a nurse but admitting that just because you are a nurse doesnt mean you know everything and that you valued the opinions of the people on this board. What a big compliment you gave everyone here!!! My husband gets mad at me for coming to the boards because he thinks I get a lot of false info that makes me more scared. He doesnt understand that you guys are the only ones that do the research and really know whats going on. Doctors do not have the time to tell you all you need to know. What with insurance giving them 15 minutes per patient there is not much to do. How can they even diagnose in 15 minutes? Its crazy.

You are a good woman. I told my mom about you after I wrote that and she said that women like you were rare. She used to work in medical records at a nursing home and she said that the spouses rarely came to visit, even when the person at the nursing home was completely coherent and cognizant. That is so sad.

Thank you for your encouragement. I will keep on researching unless a flair like the one I had keeps me down. Yesterday I spent almost all day in bed due to it. Then like a fool I went out to the grocery store where I spent almost 2 hours. I came home and my leg wasso swollen, red and hot and my bp was 156/108. I had an absolutely horrible headeache. I had one all day though. I had bought some Adult Tylenol liquid at the store as I cant seem to get any help from the pills. Well I actually opened it up and took some at the store (Texas girl, we all do stuff like that around here, almost everyone in the store will open a coke and walk around drinking it and then pay for it). Anyway, it never helped me. I got home and went to bed. The headache was getting worse and I knew my bp was stroke level. So i started thinking to myself, "what exactly does the "worst headache of your life" actually feel like?" I mean I have had migraines and clusters and sinus headaches that have made me want to blow my brains out. I have actually banged my head against the wall sometimes to gain relief from them and this felt like a primitive instinct. They should tell you what the "worst headache of your life feels like".

Anyway, thank you for your kindness and your understanding of me and my ways. It is always nice to find people who are the same and understand. Take care and tell your husband I said hello and I hope you and he have a great day!!

Hi rmb, Thank you for your reply!! Yes, I can tell you test results are a big problem to me. Ever since I was a little girl I have had problems with getting a positive result. I would have VERY OBVIOUS strep throat and yet the test would be negative. Luckily I had a good pedi who understood me and actually told my mom that there were other people out there just like me. That man has been retired for 25 years now. Why cant there be other doctors like him in this crazy world of ours? I am sure that if he were still around he would have dxed me with RA and lupus a long time ago since I have all the symptoms of RA and 7 out of the 11 for lupus when all you need is 4. But if the blood does not show up positive well then they just brush you off. I have had a RA factor of 20 in December and in Januarary it was below 20. It did not give an exact number just below 20. Well my rheumy asked for my Jan. results but not my Dec. results and then his own came back at below 20 and he said I do not have it. Well, he should have gone back and looked further because I had Ra factor of 20 and above 20 at least 3 other times in 2 years. Here in the Austin area they do not dx with RA unless it is a 30 or higher, which is ridiculous because no normal person out there is walking around with that high of an RA factor withouth actually having RA.

Anyway, I also had a positive ANA test about 3 years ago with a speckled area. That is suggestive of lupus. Well they just blew that off too despite my symptoms.

Well I better run, I am starting to fal asleep. That is probabbly the chronic fatigue syndrome I have. Seems like I have everything no one really cares about fixing. Take care and thanks again!

Hi all,
While doctors may be the academic experts. They don't always know the "real deal". All of you do. I consider you the experts....your living everyday with your disease process. As stated before, been a nurse for 35 years....yes, I have cared for many people with a wide variety of diseases, but again I consider them the experts. My husband is far more of an expert on insulin dependent diabetes than I. I know what I know from my years of studying and caring for others....but I can't tell you what it feels like to be diabetic or to have a pulmonary embolism. I know thru his experiences and all of you the fear, tiredness, compression stocking stories, INRs, what sets them going off up and down etc. Collectively, you could write a book on what you've experienced, how you've managed it and how your moving ahead. I read all of your posts faithfully. When I come home from work each evening I share them with my husband...its helpful to both of us. It makes me a better nurse but most of all it helps both Bob and I to move forward in a positive way through the daily journey of DVT and PE. :)....Lu