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- Tue Aug 21, 2007 11:09 am
Im a 25 y/o female
past surgery right nephrophexy
innaproprite sinus tachycardia-standing hr of 160
ibs- with weight loss
restless leg syndrome
brochiospastic airway disease
renal ptosis- past surgery failed kidney is actually by my belly button.
scaphoid abdomen- with easily palpable abdominal aorta
migraines- morning headaches usually when getting out of bed.
Low blood suger-when standing to long.
tri-geminal neuralgia- most painfull thing in the world.
and ive been through child birth.
spider viens all over my body
those are all the things i can think of right now.
was on atenolol but can while on inhailer
family history is diabetes- both mother and father
My life i mainly about compinsation, i cant sleep because my arms go dead and its painfull so i will sleep with no pillow and arms flat on the side of me. I cant stand to long because i feel sick the one time that i did stand to long and was unable to lay down i passed out and ended up having a blood suger of 53 and that was no fun so i always have to make sure i am where i can sit or lay down all the time. Most of my day is spent in my bed. some days are better than others but mainly i feel awful. When standing i get a heavy feeling in my stomach and feel hot and faint. My hands a feet are always cold. My movements have to be slow to avoid passing out or near passing out, and the dreaded migraine. Also while standing or sitting up i tend to get sinus tachycardia of 160 and i have gotten a low heart rate from laying down of 53, Diagnosed through one of the three holter monitors that i have had. I noticed that all of this i believe started when i gave birth to my daughter 5 years ago. I have a pcp, a cardiologist, a gi specialist, and none of them can figure out why all of this is going on. My blood work has show a low bun and creatine level and well as low potassium. I had to take postassium chloride for two weeks once. I have had a echo which was fine, a colonoscapy with was fine and and upper gi small bowel follow through. had a 24 urine alyasis for pheocromocytoma all normal .Every time i turn around something new is wrong with me. Just recently the back of my neck went numb and i threw out my back some how i couldnt even walk. The numbness and tingleing i feel all the time all over my body is not leaving my neck and i almost completly lost sensation on the back right side of my neck starting at my hair line going down towards my sholder blade, but one on the right side. cant lift my arms over my head cause the go numb. Also my hands shake sometimes where i cant even eat with them, but its only when there slightly extended. My doctors are seeing all of this a documenting it but can figure out what is wrong with me x-ray show no problems with my neck or back. Ive had a positive ana test a few years ago. My weight is only 100 lbs down from 124 3 years ago. i cant put on weight but my appitite is huge i have to eat all the time. I crave salt salt goes on everything but my dr told me to increase my salt intake how is that possible i couldnt possible eat anymore of it. I have had diarrhea for 2 years im on a hight fiber diet not working though. Im at a lost my doctors say that i need to see a nuerologist, but its just another doctor on the list that prob wont help. I wouldnt say that i am depressed but i do get that way at times because i can believe i have to go through all of this at 25. I have plently of diferential diagnosis but no clear answer for all of this. Do you know of any reason nuerologically why this would be going on? Im looking for sugestions however i get get them.
- Sat Sep 01, 2007 12:19 am
i think that i figured it out i recently got to look at my cardiologists notes and decided to do some research of my own...i found that the innapropiate sinus tachycardia that i was diagnosed with as well as hypotension and so many of the differential diagnosis that i have recieved makes sense now, i found information on POTS posturial orthostatic tacycardia syndrome and i have to say that i have not just a few but every symptom of this disorder. I have been trying to understand why my doctors havent put this together and why it took me putting it together myself. But the point being that i think that i have an answer and i need to figure this out more than ever now because there may not be that much hope for ever truely feeling better but a diagnosis would help me in so many ways, i have been afraid that i wouldnt be around for my daughter for my daughter growing up and that i would just keep on wasting away. I first begain feeling like this after the birth of my daughter and had the low blood pressure and tachycardia right away after giving birth. My cardiologist agreed that he thinks giving birth caused this but never really gave me the answers i needed to get better, the beta blockers never helped. I honstly forgot what it was like to get out of bed and not feel like i was going to pass out and die, or what it was like to sit up and eat because i felt to dizzy, or what it was like to stand for more then 10 mins with out grabbing my abdomen and feeling doom come over me and feel like i need to lay down as fast as i can, maybe ill never get to know what that was like again but at least i can maybe know deep down that i have a disorder and not that i am dying. I just want to live to run around the park with my daughter and to enjoy life with out being so sickly like. I just want help. And i don't want this pots thing but if it this then i have answers and i can try to find solutions. SO please if you have any information on this i would love love love to hear it, like how do i get tested for this? Why hasnt my doctor figured it out yet if this is it? What could be wrong with my brain if i have pots? Is this why im always cold of always hot and sweat drips down my arms all day long? What ever you have to help i so need! Thanks
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