Forum Replies Created
Thank you Dr. Diana. I read about the procedure. It gave me hope. I’ve gone through so much lately. I continue to get worse. I’ve been handed off to so many doctors. The docs have been saying that they believe my problems are vascular. My cardiologist on last visit chewed me out fusing at me telling me I don’t have a vascular problem. He told me that I am bringing this all on myself. My BP and HR fluctuate from very high to low. Mostly though staying high, while on 2 BP meds. I feel as though I’m smothering all the time. Sweating profusely, when I use to never sweat. Every muscle in my body cramps up. My cognitive problems have gotten so bad. I have always been so active, but I can’t hardly do anything any more. I spend a lot of the time in tears feeling lost and alone, and in raged and have no control of it. But crying makes all the pain worse. And I Pray to God to just let me die. I’m so desperate.July 1, 2015 at 3:23 am in reply to: I have 2 CD discs of brain MRAs from 2006 and 2014. #5567
Yes I have been looking at them. I’ve found other sites to compare. My uncle, now retired use to be a chief tech in brain scans. I’m going to see if he will look at them with me.June 30, 2015 at 3:24 pm in reply to: I have 2 CD discs of brain MRAs from 2006 and 2014. #5562
I am also trying to get all the info that I can to take to a doc that can help diagnose me. I’ve been looking up some online. We have none here. I continue to get worse.
No diagnosis of POTS yet. I know that I had a dizzy spell the other day, I mentioned it to my doc office online. The next day when I wasn’t feeling dizzy, the PA told me to check BP laying sitting and standing. It did drop sitting and standing but only 20 points. I can remember almost blacking out a lot upon standing when I was younger many many times. Even losing full sight one time for a few minutes but not losing consciousness. I think I did kind of lose consciousness a few times when I was alone with my children. I remember going down, holding on to the bathroom door and I could hear my kids who were standing by me, but there voices sounded far away and it was like I was completely out of it. That was frightening because they were very young. I’m about to get on a plane in a couple of hours and I will have to medicate so that I don’t get sick with stomach issues. Flew for years without problems and now I can’t. And I love to fly. I had a brain MRI around 9 or 10 years ago. I had one last year. I have a CD of the one I had back then. I think I want to see if I can get a copy of the one I had last year and compare them, if I’m allowed to get the last one. Doc said that the small vessel disease would not cause all the pressure in my head, down into my spine. No one can tell me why. Still not sure why I’m having vision problems if my eyes are OK. I told my eye doc about you and she has been doing some research on your site. She is very interested in these problems. Also, someone else in her office is doing the same. I am educating my PCP on this too. He is a family doc, and treats some of my grandkids. I showed him a pic of one of our twin girls that appears to have signs of EDS. The other twin and her brother have had slow development, and problems with hearing and sight. My kids all have had some problems too. My youngest wasn’t able to fight off viruses and had to have gamma shots for 2 years. My daughter, I’m pretty sure has Lupus, but doesn’t have insurance so she has never been diagnosed. I have had 2 ANA tests come back positive a few years ago, but now they are negative. Then all the problems with my husband and his family and no diagnosis is unbelievable. So I’m thinking we will have to go out of the state to find docs.
Also, everything I do is becoming such a struggle, that I don’t want to do anything but sit in my room all alone. I have given up just about everything that I love to do. I struggle with the most simpliest things.
This is what I have been diagnosed with so far. Hashimotto’s, hypertension, Hyperlipodemia, Mild mood disorder(boy do they have wrong. Should be strong not mild), ADD, carpal tunnel syndrome, primary osteoarthritis involving multiple joints, also the spine with scoliosis, carotid artery stenosis, small vessel disease cerebrovasular, Crohn’s, Tinnitus of both ears, skin sensation disturbance. There is so much more going on that they can’t seem to figure out, and just go by test readings, but I still live with so many symptoms that are getting worse every day, and I’m tired of telling docs about them, only to be told that I’m fine.
Sorry for the delay in replying, but I typed it all out last night and lost it trying to submit it. Thank you so much for caring. Until I found your site, I felt all alone because my symptoms sounded so weird to all my docs, and I was even told I was weird.
Thank you . I’m taking the one without the D. I had hydrochlorithiazide 12.5 mg.m I tried that this morning. They tend to make my entire body have muscle cramps so I had to stop taking them. But I am taking mineral supplements. Hopefully that won’t happen.
No Diamox yet. I have been on Zyrtek for a couple of weeks. Not sure I should be taking it with High Blood pressure. And it’s been high this week at 190/125. I am currently on Metoprolol 50 MG at night and Lorsortan 50 MG twice a day I plan to go to my eye doc today to check the new glasses. I will ask. Thank you so much.
The book I ordered showed on my statement as PAYPAL *GENETICDISE I ordered it by clicking on the “Buy it now” button. How do I get to the PDF file?
I’m not sure which one I ordered. It showed up on my statement so I know I ordered something.
I tried to send a pic of my granddaughter to you on the forum but it wouldn’t go through. Is there another way I can send it to you? Talk about Hyper-mobility. You can even see her arms the way you showed on the videos. I use to think wow she is good, but now I fear. My daughter in law is sensitive about some things. I just need to know if there are things I need to watch for.
I think I orded it. I ordered a digital booklet and book
I have had it. Very painful. Screaming painful. I was driving home when I was experiencing the horrible pain. I was all alone and driving on back roads. Opened my son roof so that I wouldn’t pass out. I must have scared everyone between Denham Springs and St. Amant. Was trying to find a cop to help me. Non around. Imagine that. I took spasm pills that dissolved under my tongue, more than I should have, but got some relief. The spasm pills have been my life saver. I also have Crohn’s. My entire digestive system is always in raging spasms. I also have muscle cramps daily in every inch of my body.