mrsdavidson8605

Just wondering if anyone on here actually lives in Kansas? Sometimes I feel like I live in the WORST state possible to get help for this problem!!!

Thanks for all the advice. I think i am going to work on one thing at a time, since we've now dove into this whole thing with my kidney.. after that, i'm going to keep pressing forward! (that is, if i'm still feeling this way). Hopefully my problems with my kidney are causing all these other strange things.. i'll keep my fingers crossed for that!!!

Morgan, Thanks for the encouragement.. I know it's rediculous that doctors don't seem to care much until it's something "strange or impressive"... It's funny how he's taking me SO seriously now that they have something on "paper" showing I am really sick, eventhough i've been screaming this for almost 3 years now.. oh well.. the most nerve racking thought is losing a kidney and the whole process but I agree, I would gladly give up a kidney to get rid of this misery!!! Hopefully they'll figure something out within the next week and I can get it done and over with!!! Rachel

Hi, I am sorry to hear about your son. I'll back up what has already been said. Don't give up! keep fighting! unfortunately you may have a long road ahead of you before you get answers..... but the only advocate for your son's health is going to be you! One bit of advice I can give, from personal experience, is sometimes you have to be FIRM with docs. They don't understand so they want to just push you aside. Be firm, request specific tests. If they don't want to do it, move on to a doctor who will. That's the only way you'll keep your sanity and get help for your son. I would definately get a Tilt table test done ASAP. I would also see an electrophysiologist (sp?)... From my recent experience, I would also look on this website for the causes of POTS and rule out EVERY single thing on there (If he is diagnosed with POTS, of course). That is what my husband and I have been doing and we might have an answer after almost 3 years of searching. Anyway, best of luck to you and your son. I hope this helps.....

Thanks for the encouragement! LOL yeah I'm anything but impressed!! oh well, doctors don't have great bed side manner these days!

Well I went in yesterday for the surgery. They got in there and saw that there are three arteries feeding into the main AVM feeder itself and they were not able to use the coils to fix the problem. And I have an aneurysm in my kidney. So the doctor and the specialist looked at the pictures last night and the specialist is going to call another specialist in the Kansas City area (I live in Wichita). They said this very "impressive" (although, I am not too impressed!) and that they have never seen something like this in this position.... They are saying they may have to take out my entire kidney now. The good news in all of this is that my doctor's exact words were "After looking at those pictures, i'm pretty darn sure this is what is making you so sick"....... I'll keep everyone updated..

I get a weird pressure feeling in my head/ears.. like i'm in a high altitude... kinda "full" like... I am VERY sensitive to sound and it actually hurts my hears sometimes when I talk loudly... strange.. but yeah I know what you're talking about when you say "fullness" in your head...

There are several meds out there. Just don't want to give you false hope that taking a pill will "fix" you immediately. There are a lot of us who have been battleing medications for a long time and their side effects. I was on Midodrine for about a week but couldn't take it anymore. I had SEVERE tingling down my head and neck. Felt like something was crawling on me. There are other meds out there. Don't give up!

Hi, I'm so sorry that you are going through so much. I hate it when people tell me " I know what you're going through" SO I won't say that. I have been struggling with being very ill as well, but I haven't gotten many answers. My pastor said something to me that hit home, and was hard to swallow. He said God allows us to walk through circumstances in order to grow our faith in Him and make us stronger. God also allows us to choose how we respond to it. I have really had a hard time with the second part. Choosing how to respond. There are days when all I want to do is just give up and die, but then I realize that I was given this life and body for a reason. Not sure why I was chosen to walk through life this way, but I was. The past couple weeks, I have just been trying to do my best to make the choices to make the best out of the situation. I have an 8 month old and I just want her to have a fulfilled life. I have to keep going for her and my husband.. AND MYSELF! I know that doesn't fix everything, but it put a new perspective on it for me. I will be praying for you and that God will give you strength. Hang in there!!! p.s. I've been stuck in my house for about 8 months now, except for going to the doc. I tried something new last week. I spend 10-15min everyday (that it's not too cold) outside on the porch swing with my daughter. What a difference that makes! I know it's not much, but maybe you could think of doing something small like that to make you feel better...

Another UPDATE!!! I guess I am having the surgery tomorrow!!! geeze I wish these doctors would get their act together! IT will be at 8:30am in the morning. Thanks for all your prayers..

Hi, My only advice would be to get another opinion. Don't give up because docs aren't listening to you... you will find answers if you keep looking! i'm in the same boat.. i'm just determined not to give up.. If you're really concerend about the results, I would get another opinion of someone who is a specialist in that area and can reassure your concerns.....Hang in there. I literally know how you are feeling!! Rachel

My symptoms used to consist of being lightheaded, VERY weak, brain fog, bp/pulse problems, dizziness, vertigo, blurry vision....etc now I have some other strange symptoms.. Just wondering if anyone else experiences some of these..... the newest ones are a tight feeling in my throat (like someone is choaking me; i'm not anxious, in fact it seems to be worse when i'm just sitting and calm), "full" feeling in my head (hard to describe), pressure in chest, strange swallowing sensations. These are fairly new symptoms to me. Just wondering if they could be POTS related. I know POTS can present itself in many ways...

I wanted to try the procrit but Dr. Wisner (Mayo) did not feel comfortable doing it b/c of the side effects... Sorry that's all the info I can add...

UPDATE: They moved the surgery to NEXT Wed (the 12th)..... So another week of waiting and being anxious

My tonails get real purple most of the time.. I just paint over them so I don't have to look at the ugly purple! haha My fingernails only seem to get purple when my hands are cold..

Morgan, You might check out this website... http://www.ninds.nih.gov/disorders/avms/avms.htm it talks about this kinda thing. Yeah they plan on doing the catheter thing, doc said it was way less invasive.. which is good, just still nerve racking. I would be ESTATIC if this is what is causing all my problems.. who knows!!! Rachel

I guess that is true! Thanks for the encouragement...

I just had a CT angiogram of my left kidney yesterday. My doctor called me this morning and said that I have something called AV malformation, which could be causing Hypotension. I asked him if this could be causing weakness, foggy brain, etc and he said he wasn't sure but that I needed to get this fixed. They are going to put a catheter in and clot the vein and artery which are too close to eachother, causing lack of blood flow to the kidney. The good news is my kidney itself is functioning properly.. He said he doesn't think this is the Nutcracker Phenomenon but that it could very well be a reason for my symptoms.. I'm just praying that this is the end to my long road of health issues!! Not sure when the surgery is yet. A little nervous about that! i'm only 27 and the only major thing i've done is have a baby!!! yikes. Well I know God will be with me.. just wanted to share this. Anyone else had this problem/been checked for this problem? Rachel

YAY! That is so great that the doctor was so helpful!!! Those docs are VERY HARD to come by!!!!!!

so sorry to hear that. Maybe you could cut back the hours, but if you're like me, money's tight.. luckily I was able to quit and my husband works, but I know your pain. When I started getting bad, it was such a struggle to go to work. I'll keep you in my prayers. Good luck.

I had a TTT done locally before I was actually diagnosed with POTS. I didn't even have the medication, I passed out after 14 minutes. Not sure the actual numbers, but I know my BP and Pulse soared then dropped. At one point my BP was 70/40... hope that helps..

Thanks for the advice. Although, I have tried the SSRI's, some haven't helped and i'm also a little aprehensive about those due to side effects.... I am thinking about trying the IV thing. See if that gives me any boost at all.. Dr. Wissner is an electrophysiologist.. finding a good doctor in Wichita Ks, that knows anything about POTS is like finding a needle in a haystack.. we have an ok pcp right now who is at least willing to run tests...... thanks again!

My symptoms became CONSTANT during my second trimester of my pregnancy. I was miserable throughout the entire pregnancy and felt no better after delivery. I didn't have a hard time BP or Pulse wise with the delivery, just the baby's heart rate dropped a little during pushing. Glad she's here and i'm not pregnant bc that was probably the worst 9 months not getting ANY medical help!!!! now I can try to find some answers!!!!!

I am very tall (6'0) and about 170 lbs.. I am "lanky" and have ver long fingers, joints. I was told this could be a cause of POTS.... I used to be an athlete in college (played volleyball) and ran 2 miles a day. I was told that a lot of women with POTS were young, and were athletic.. is that true? Oh yeah and since I had my daughter in June, I lost 80 lbs... didn't exercise either. Do a lot of people lose weight with POTS?

Hi Cindy, I would say you need to ask for a Tilt Table Test. That would at least rule out POTS/NCS. Then you can get your foot in the door to other docs (hopefully). Believe me, I know what you're going though with the docs! (as do a lot of people on here!) Just try to stay positive, as much as possible. Hope that helps! Rachel