An update for everyone.

[blizzard2014]

I have some good news and some bad news. The good news is that my heart looks good on EKG, and I don't have essential hypertension. I do have hypertension, but only when standing and moving around. I sit down and BP stays at 117/76. When I stand up, my BP goes to 130/100, and way higher depending on how much moving around I'm doing. Then the fast heart rate and high BP go right back down to normal; sometimes below normal within 1 minute of sitting back down. I am also getting more headaches and now vomiting when driving in a car. I vomit every other time I go for a car ride and my neck is always in a spasm like I want to wretch. I am also having a hard time swallowing.

I am barely getting down 1000 calories and sometimes under that per day, so my weight is dropping again. I had to stop the BP meds with my doctors approval because they were lowering my BP dangerously low when sitting. They were holding my BP at no higher than 122/90 when standing and moving around, and they were keeping my heart rate down. But once I sit down, my BP would go down too much. I think this has been going on all my life and never caught by doctors because it only happens when I'm standing. There is a condition that goes with APS called POTS and my version seems to be HyperPOTS, where you have an elevation in BP and heart rate upon standing.

I'm looking for a specialist locally, but I will be setting up an appointment with Jill Schofield today. I have not even been well enough to type or call and set up any appointments until today. I can't even vacuum the house, because it sends my HR racing dangerously high. I am resting and taking it easy. As long as I remain sitting, my BP stays normal, and often times low. I am relieved not to have straight up hypertension. Even my PCP finally agrees that it isn't regular hypertension. I would have elevated BP when sitting and also when laying down with straight up hypertension. I have a sore throat for days now and last time I was sick in 09, I had a sore throat for 3 months straight. My sore throat is only on one side though.

I was reading that in a large subset of patients who develop a more slow progression of Sjorgren's Syndrome, initially they have what seems to be POTS, because of small fiber neuropathy that happens before the dry eyes and dry mouth. I do have dry eyes for days now, and dry throat, but only on one side. I will be looking into this as well, even if I have to pay out of pocket to find a good doctor. My family has agreed to help me find a better doctor and to pay for some tests, as they have never seen me puke and dry heave in a car before. I was a truck driver, never had issues like this ever before. It kind of feels like I have a never-ending hangover.

I hate doctors and tests, but now I need to get to the bottom of this. I am really out of it. At least with all of the pictures and video of my BP going crazy from sitting to standing, the docs can on longer call me a nutter. I failed the 6 minute walk test as my oxygen dipped down to 91 half way through the walking exercise. I also had a 130 HR. I blew quite a few PFTs at 50 percent lung function as well and they want me to go back onto my inhalers. I think even the lungs can be affected by dysautonomia through constricting when they aren't supposed to. Thank you all for listening to me. I'm slowly making progress here.

[Lure2]

Hi,

I wonder if you have got a diagnose of Antiphospholipidsyndrome?

When are you going to see Jill Schofield?

Best wishes from Kerstin in Stockholm

[Lure2 in reply to Lure2]

Hi again, I have reread your post but I can not find dr Jill Schofields name. Have I read it in an earlier post. I can not understand. Do I have a bad day perhaps?

I am sorry you have such problems when driving and good that you have decided to see a Specialist of Sjögrens Pots and APS. I wonder if you have got a diagnose of APS and if you were diagnosed on symptoms or on antibodies?

Take care

Kerstin

[MaryF Administrator]

What I will say at this point, is thank goodness you have an up and coming specialist appointment, this is so important, and yes it is very common to need to check out a number of things including Thyroid, Sjogrens, other autoimmune conditions, plus of course your levels of B12, Iron and D. Please do tell us how you get on at the appointment and if you can list your medical history in bullet points and your symptoms etc, so you get the very best out of the appointment. MaryF

[Lure2]

Now I see her name in your post again. You said you phoned Jill Schofield yesterday. How did it go. Was she willing to take you as her patient?

I hope you finally get to a Doctor who understands your symptoms. We have been talking about your high bloodpressure for a long time. Please tell me if she will take you as her patient!

Take care!

[blizzard2014 in reply to Lure2]

Dr. Schofield is the best. She trained under Professor Hughes. She has parents who bring in their children who have been sick for years; one family has spent well over 500 thousand dollars and has gone through 40 specialists. One appointment with Dr. Schofield has now answered all of their questions. You have to realize that I hate doctors, I hate being sick. I have been sick for a long time. I have dealt with all of this by simply reducing my occupational activities and my extracurricular activities. I became a driver due to no longer being able to handle physical work. I have slowly adjusted to my body over time without even realizing it. Before I had my blood clots five years ago, I had not been to a GP in over 10 years. I'm not what you call a good patient. I hate to have to grovel to doctors for help, but it's getting to the point where my quality of life is completely gone. I have one doc "PCP" telling me I'm all good, and I have another doc "lung doc" telling me I'm in bad shape. So at the urging of my moms, I will also be seeing a new Pulmonologist to rule out or rule in the COPD diagnosis. You have to also understand that I have been living off of my savings for 5 years which are almost all the way depleted now. I do not have the money to see all of these specialists out of my healthcare network, and if I remain with the current doctors I have now, I will never get any answers. My family is going to help with these appointments and even pay to send me to Colorado to see Jill. I know another closer doctor was posted, but Jill also has experience with POTS and dysautonomia and she can order all of the tests I need, and hopefully I can get them ordered by my current PCP. I feel sick a lot, and it takes me weeks, even months to make doctor appointments. I move very slow. It may seem like I'm dragging my feet, but I am doing the best I can. I really appreciate the support (and the tuff love/support as well). I'm going to post two different lab test to prove that I have APS. I don't want any of you to think I've been trolling here I am merely overwhelmed by all of this. Thanks for the support.

[Lure2 in reply to blizzard2014]

If you say you have got APS we believe you. You do not have to show "proof" to us. It was just that I had asked you if you were Lupus Anticoagulant and you had never answered. Your bloodpressure is very special so hope prof Schofield will help you with this also.

Please let us hear how it goes for you. Take good care of yourself!

Big Hug from Kerstin

[blizzard2014 in reply to Lure2]

I don't know if I am LA positive as one test was normal and another was off the charts high for LA. My current hematologist would not explain it to me if I was LA positive or not as she seems to not care. I will post the test so you guys can give me some advice.

[Wittycjt in reply to blizzard2014]

So you still haven’t said when your appointment is, it’s been a while now, how are things going?

[blizzard2014]

It is progress for me, because now I'm putting the pieces together. Most forms of Dysautonomia will not kill you. They are just uncomfortable and make you disabled at times. I have a good INR for weeks now no lower than 3.5 at any given time. Now I need to figure out what all of these other symptoms mean. I also finally learned that if I stay in the Medicaid system, I will never find any doctors who can help me. It's a waste of time and effort. It's like trying to take a dog or a cat to a GP. They just don't know anything about animals. Most patients are "ABC" when we are "Z's!" It's taken me months and years to finally realize this. I have went in for CT scans for clots and many other issues not even knowing that my BP and HR were so crazy when standing. I have a big piece to the puzzle now. I have spoken with others who have these anomalies and I am now on the right track. I will be setting appointment with Jill today as I did not have access to the phone yesterday. Then I will spend a few weeks creating bullet points of my symptoms and diseases. I will also be setting an appointment with a local doctor who specializes with heart issues and Dysautonomia. Dr. Schofield is very well versed in APS. I will still need to see her to write letters and guide my current and future GP's. It might not look like progress, but it is for me. Just knowing that if I stay sitting down, my BP remains completely normal is a big comfort to me. It means that I'm not dealing with 24/7 high blood pressure. I never wanted another major disorder. Essential Hypertension is a bad disorder and can kill you over time. I know even high blood pressure when walking can hurt you, but due to a leg injury, I walk very little.