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Can't get a diagnosis
I'm hoping to get some advice from those of you who have been suffering with symptoms similar to mine. I'm a young women, 47, and live in South Florida. For 2 years I've been feeling sick. Initially I thought I had a sinus infection but after a long period of sketchy bloodwork and lots of specialist, it seems to be more heart related. The mucus I was blowing out of my nose, turns out to be stomach acid not mucus. My WBC is always high and recently my RBC count is down. Always high Lymphosits. Everything else is pretty normal.
I had gone to the same doc for 20 years and have always been known ot have low blood pressure. That doesn't seem to be the case now. I had an Xray done and was diagnosed with Atherosclerosis. Most times my BP is around 113/67 but it spikes (for no reason). At the doc it was up to 177/100. I've been referred to ENT, GI Doc, and Cardio but no one seems to feel this is anything urgent and I continue to suffer. When my BP goes up...my heart beats HARD (not fast) and I get cold and shiver uncontrolably (as if I were laying on a snow bank), dizziness, and my head feels as if it's filled with fluid. As silly as this seems...my rear-end is cold and numb all the time and I feel a lot of pressure back there (but not pain). I know it seems stupid to think my "butt" is linked to my heart but it seems to have some connection to these BP issues. I've developed calcium deposits throughout my pelvic area and kidney stones. Also, my left temple hurts and vein buldges out. There are pains that shoot through my legs. I have zero ability to think straight (wrecked my car 2 times...wore two different shoes out...couldn't remember what the inside of my house looked like)
I had my first Cardio appt the other day and was disappointed. I allowed him to ask all his questions, then asked if I could tell him some of my symptoms. He didn't want to hear them but I said "maybe I can just take 45 seconds to go down this list and you can ignore anything that you don't feel is relevent". When I got to the confusion part he said I'd need to see a Neurologist. My point to him is...I don't feel my blood is circulating. He told me that wasn't his field and I'd need to speak to my Primary (which I've done).
When I'm upset or angry, it feels as if my heart is beating sideways (if that makes sense). I've had times that I've vomited and feel so so so weak! I'm scared to do anything or even move from my seat. Maybe I need a different specialist? Doesn't a cardio doc deal with circulation and veins? I think (but that's just me since I can't get any answers from professionals) that I have so much plaque in my veins that my blood isn't flowing properly. I also know that if I don't get answers I'll die (or continue to want to if I don't feel better). Each day feels as if someone is holding a gun to my head and saying..."it's not like the trigger is being pulled". I'm confused so maybe I'm not communicating with the doctor correctly. My appointment was yesterday but my stress test is scheduled for over a month from now!!!! He also told me to stop taking my BP (which might be a good thing since it scares the hell out of me when it goes way up).
I guess I need some guidance on what sort of doctor could help me. Has anyone had this sort of thing happen? Do I need a Vascular doctor? (sorry my Primary doesn't seem to be helping much). Of course there is WAY more symptoms than what I've talked about but hoping this might shed some light. Any advice would be greatly appreciated. BTW, my brother died last year of a clot to his heart and my sister has had clotting as well
JamesPL, July 17, 2019 7:12pm EST
Welcome to the support network. I'm sorry you've been having to deal with a vague diagnosis. That can be very frustrating as you've pointed out. After reading about your symptoms, I'm wondering if some of your numbness is related to your nervous system. Just an observation as I have no medical background. At any rate, I would strongly encourage you to seek other professional opinions especially another cardiologist. It is so important to have a doctor that can actually help you and I don't think that's the case with you. My cardiologist will sit down and explain everything to me even if I tell her about a symptom unrelated to my heart. You need that as well. Seek out another opinion and do it now. It's important that you are correctly diagnosed by someone who cares!
I wish you all the best!
DolphinWrite, July 17, 2019 7:31pm EST
Smiley76, July 18, 2019 12:18am EST
I think it’s time to see a new primary and go down the line. 20 yrs and no answer is a long time. These are your symptoms and feeling. No one should feel how you do, and not be listened to. Please do this ASAP.
Best Wishes and keep us posted.
jerzeycate, July 21, 2019 3:13am EST
That was a bit like watching in the mirror. when you said, "get cold and shiver uncontrollably (as if I were laying on a snowbank), dizziness, and my head feels as if it's filled with fluid," I was shaking my head in the "Yes" motion. I had, and on a rare occasion still, have similar symptoms. I learned that I should have expected these and other symptoms, BTW confusion is another that I had when things got tough. The main difference is that my Cardio team each was quite interested, and still are, in how I feel--my symptoms.
In my case, the symptoms came when I overdid. The cold, clammy--but sweating at the same time-- would start in my hands, go up to my arms and then spread throughout my body. Cold Sweats are one of the worst symptoms I got. These symptoms had to d with a lack of properly oxygenated blood. I was reminded that the blood from our heart goes throughout our bodies so that our organs and body systems can work properly. Without properly oxygenated blood things don't work !!!
Can I ask where in south Florida you are? I am in SW Fl in the Tampa area.
I agree...you need to get new doctors.
If you let me know where you are I can get you the name of the "go-to" cardiologists in your area.
I wish you the best. Please know that it can, and it does get better...
It's a Great Day to Be Alive...
Rmp829, August 8, 2019 10:15am EST
Have you been to the ER? They will run the appropriate tests to determine a proper diagnosis.
Also sounds like you need to look for a new doctor 🤷🏽♀️
jerzeycate, August 8, 2019 1:15pm EST
I was looking over your initial post and wondered who told you that there is "stomach acids" coming out of your nose If this is the case then you might want to find a gastroenterologist and begin your quest for diagnosis there.
Also, I would like to stress the ER (Emergency Room) is designed to provide Emergency Treatment. not a Diagnosis. While a diagnosis may come about as a result of testing done to treat an emergency situation, the extensive testing necessary for a thorough diagnosis is not what they do. There are times when cardiac issues/ symptoms are related to things far off the ordinary cardiac tract.
So, if you would like to have an idea of where you can find providers known to Support Community Members, please let us know what area of South Florida you are located in and we will be glad to give you some further direction.
Best to you