Decided To Just Stop.

[poppetkazutaka]

"Let's hope it clears up for you."

That's what the doctor said, in regards to my mentioning that for about a month and a half, before switching meds, I've been waking up with a racing heart around 1-2am for no reason.

I'm done. This is the third doctor I've had just blow off everything. I even tried to point it out for him. All the symptoms again. "Since I got better from the infection, I've gotten more exhausted, I'm sore again, aching all over, hurting, and I'm getting that facial rash..."

Nothing. Checked my bp, my heart rate, saw the orthostatic hypotension heart rate thing was still causing issues, didn't say anything about it. "Any side effects on the meds?" "None, not really."

"Alright, I'll see you in three months. Let's hope that heart racing thing clears up for you."

Out he went.

I'm actually amused. I wasn't expecting much else. But I'm done. No more questions. No more tests. I'm just going to let it get worse and worse. I can't be bothered to care anymore.

[jlmahon]

Don't give up! You need to find a doctor who will listen and help. Are you near a major hospital system like Cleveland Clinic? I was going from one doc to the next before I found Dr. Grubb in Toledo. Maybe you could get an appointment with him? Don't let all this get you down. It's frustrating when you don't know what's wrong, especially when you can't find a doc to help you.

[delphicdragon]

Poppet-

Just out of curiosity have you been checked for Lupus? It's a blood test, I think, called ANA. Joint pain plus a facial rash are almost diagnostic for Lupus. I'd see either your PCP or a rheumatologist. Yes, I know that the last thing you want to hear is "go see ANOTHER doctor", but I would really recommend that you do get that test, at the very least.

I know you want to be done with doctors. I want to be done too, and I would recommend that you take a break for a month or two to just regroup (after you make one more appt to ask about Lupus).

Good luck!

Sara

[erickamcc0523]

I can also give you a name of a cardiologist (mine) in Knoxville, TN who might work for you.... it's a bit of a shorter drive (though it's still about 4 hours away) than to Cleveland, but he might help... I also know there is a neurologist here in Knoxville that treats POTS and might work out for you.

Please don't give up!!! I know you have to be exhausted from trying different doctors (I know the exhaustion myself), but unfortunately, with having such a rare condition, you have to become an advocate for yourself, and to seek out different doctors until you find one who will actually listen and help you and not just say "let's wait and see". I'll pray that you will be given the strength and stamina to fight for yourself and find relief from your symptoms!

[tinkerbella]

Lupus is more than a blood test but it is a try. I have a very high ANA and Lupus is always on the back burner with me. Google it and see if it is something that sounds like what is going on. I know that feeling of being so darn frustrated, if you want to email someone and vent I'm here for you. Please know you are not alone with your frustrations, we are all here for each other. There is nothing worse than someone that does not listen to you. You"re in my thoughts and prayers.

Bellamia~

[poppetkazutaka]

Don't give up! You need to find a doctor who will listen and help. Are you near a major hospital system like Cleveland Clinic? I was going from one doc to the next before I found Dr. Grubb in Toledo. Maybe you could get an appointment with him? Don't let all this get you down. It's frustrating when you don't know what's wrong, especially when you can't find a doc to help you.

Nope. Just in BG, KY and not anywhere near anyone good. Dr. Zia was supposed to be good but all his tilt table test did was give me a $750 bill and a borderline diagnosis.

[tinkerbella]

Have you had any holter monitors done? blood work? 24 hour bp cuff? stress test? cardio plummy stress test? emgs?

BELLAMIA~

[Tachy Phlegming]

They are supposed to be practicing "evidence-based medicine." But with some things, it appears that they don't:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1681419/

And then here's something a little more fun which sounds like what you experienced: (Although this video is really about the dangers of using homoeopathy for cancer etc., I daresay it's more likely you get this with any other condition [just posting this for the video, not the rest of the page]):

http://religionvirus.blogspot.com/2009/09/...t-of-humor.html

Good luck with finding someone who is better. When they make so many mistakes, don't know, and use crystals, (and charge a fortune for it to you or an insurance company anway), it's an ongoing nightmare.

[poppetkazutaka]

Have you had any holter monitors done? blood work? 24 hour bp cuff? stress test? cardio plummy stress test? emgs?

BELLAMIA~

Over a year ago, yes. All negative.

[tinkerbella]

Sounds to me like it's time to repeat some tests. have you had an echo? Come to Boston and get a second opinion. You can stay with me.

Bellamia~

[tinkerbella]

With the facial rash go to a derm as they can do a biospy to rule out what it really is. I should have done that, and you need a good rhummy if you think it is Lupus. Usually you have a sore throat that won't go away,( my room mate last week has lupus and told me that was the give away) joint pain, arthritis, and a lot of blood work would lean toward it. No one test says you have it. The rash is a butterfly rash and you can see it online. They thought mine was rosacea after a few months mine went away and my skin is clear as can be. I hated it and had a real hard time as my heart was beating out of control and I was waking all through the night also. I have a wonderful rhummy in Boston also. Do to my Pots we keep in touch through email now as they think I do have an autoimmune thing going on as well and Lupus would be what they are thinking. I'm due to go back as my joints are killing me and having more sore throats, my blood work is masked by antibacterials though. The trip into the city is hard on my body now as I don't drive and have to take cabs.

I wish you the best and try to remember we are all here to help you and want to help if we can.

xxx's

bellamia~

[poppetkazutaka]

With the facial rash go to a derm as they can do a biospy to rule out what it really is. I should have done that, and you need a good rhummy if you think it is Lupus. Usually you have a sore throat that won't go away,( my room mate last week has lupus and told me that was the give away) joint pain, arthritis, and a lot of blood work would lean toward it. No one test says you have it. The rash is a butterfly rash and you can see it online. They thought mine was rosacea after a few months mine went away and my skin is clear as can be. I hated it and had a real hard time as my heart was beating out of control and I was waking all through the night also. I have a wonderful rhummy in Boston also. Do to my Pots we keep in touch through email now as they think I do have an autoimmune thing going on as well and Lupus would be what they are thinking. I'm due to go back as my joints are killing me and having more sore throats, my blood work is masked by antibacterials though. The trip into the city is hard on my body now as I don't drive and have to take cabs.

I wish you the best and try to remember we are all here to help you and want to help if we can.

xxx's

bellamia~

I've been saying for years its autoimmune but no one will listen to me. They did a blood test a few years back and said it came back fine and nothing was wrong. That I'm perfectly healthy and I just needed to take some anti-inflammitories. But it didn't help much.

After having two nosebleeds today, one of which made me wake up with a headache and coughing as I choked on the sticky blood in my throat and nose, I really don't see it improving. My septum is dissolving on its own and I'm just at a loss at how I'm supposed to make them see my body is killing itself.

I have an apt with my sinus doc on the 22nd and he's going to check the septum to make sure it isn't breaking down anymore. If it is, he has to biopsy it. I've mentioned I want a immunological check in a blood test to them over the phone because of all this sickness crap, and they said yes, so if something shows I'll go from there. Otherwise I'll just let it go.

EDIT: Also, it's hard to take pictures of, but this is from the other day, and it felt like something was biting the skin below my eyes where it was red. It was really red-purple, so the picture doesn't do justice when you have to take it yourself...

My facial rash picture.

[tinkerbella]

you did a great job taking pics. Pretty face and it is a rather butterfly shaped rash. Did it come out as a result of the sun or wind? I would book an appointment with a rhummy asap while you have it as the rash can come and go. Also a derm person. Now my nose is broken down inside from the steriods from flosase I have been on forever. Do you take anything like that? I need to mention that to my PC as the allergist noticed that I was all bloddy inside and soooooo dry. I was concerned as I had been coughing up blood.

My primary care usually runs all the primary blood work for the rhummy to see if my ana is up then the rhummy runs more from there and does a physical exam when I'm there. She was just going to put me on all the meds as she thinks I have Sjogren's Syndrome. The meda are the same for both illnesses. The meds are really hard on your system and my PC and I decided not to take them. Sometime the cure is worst than the illnesss.: )

Don't give up all because of someone who isn't listening to you. Just means you need to get someone who will. Good Luck sweets....

Bellamia~

[Tachy Phlegming]

I had a rash that looked like that. There was nothing about mine that looked different.

Mine was from the sun. It started developing a day after exposure to an hour of full sun (and very hot weather) after months of indoor living. It got a lot worse within days. Mine was all over my body because I was wearing shorts. It started to turn purple behind my knees and it spread. It itched.

Do you know whether yours is from the sun?

Is it?

If you think it isn't, has your sun exposure changed recently?

Does it itch? (I'm not sure that what I got on my face that day really itched now that I think about it).

If it's not from the sun, that's interesting -- it looks so much like what I had.

I thought it could possibly be Lupus and the doctors thought the same but it wasn't biopsied and they called it "polymorphous light eruption." I used oral Benadryl and also a strong cortisone cream to treat it. They won't prescribe a strong cortisone cream for your face (but had I not used it extremely sparingly on my face -- I'm pretty sure I had to resort to that at least once eventually -- I think it would have made my face more sensitive and more irritated than with that minimal treatment). My skin was super super sun sensitive for many many years after that exposure.

What medications have you tried for it (if you have)? You should try to get into even a garden variety dermatologist. I can't imagine that they wouldn't try to treat that and/or give it a name. I don't know why another doctor wouldn't have tried to treat it or referred you for treatment.

[poppetkazutaka]

It comes and goes on its own, isn't triggered by anything in particular, and this was after being outside. In the dark.

Once or twice last summer I was walking -as I do on lunch for exercise- and out of no where my skin began to burn. I don't mean like a sun burn, I mean like holding it over a candle until it was too hot and it felt like it was on fire. I had to run to the shade. I went to the bookstore and hid out for a few thirty minutes but then had to go back to work, and luckily it didn't do it again. It felt like it was being attacked.

But they fade quickly. It comes and goes.