Another doc bites the dust

[StaceyYount]

Hey all,

I am sitting here in my hole, clutching my spoon and have been lurking but not up to posting. Sorry it has been a bad few months. This hole is so deep I feel like I will never see the light but I will.

Know I have a lot to catch you guys up on but today I will just rant about stupid doctors. About 4 months I posted to you guys about my rash and sed rate. I eventually did get to see the rheumatologist. One of the first things she said was you have had an elevated sed rate before why the concern now and I don't think this is a rheumatology problem but ... So then I knew I was in trouble. The second question was so why the wheel chair?? Then I got well if you walk a few steps your heart rate settle back down right??? She didn?t realize how that my husband and I knew what she was saying that this what is suppose to happen. So we explained about POTS. She looked at my rash a bit asked a few questions but again said I don't think this a problem I can help you with. But we will order some blood tests. She listened to my heart and siad goodness that is rapid and you are siting down. You need a good cardiologist. 2 weeks later call your sed rate is still high and you are anemic, more tests. Yesterday, I got a call from her nurse and she said the doctor said that she really has nothing to offer me and to go back to my primary care doc (poor guy). Now even her tests showed an elevated sed rate and some other stuff (anemia) but since it does not shout out a problem she can?t help. I Know I should not get my hopes up that someone is going to find something that will help or at least make something go away but it never does. I AM SOOOOOOOOOO FRUSTRATED!!! No doctor wants to investigate anything, unless the tests show something definite they just send you on your way. I still think I have some sort of vasculitis but maybe not it may still just all be a part of POTS but (*&^%$##$ this is a crazy disease. ARGH!!!!!!!!!!!!!

My poor primary care I am going to see him on Tuesday. How many times have we had to go back to him after a supposed specialist has given up. Long ago I gave up on the magic pill to make me completely well ( very hard to do ) but sometimes I am hoping for a little magic drop to help some of the symptoms. Ah well

Onward and hopefully upward!

Hope your day is going ok today!

More later have to go lay down before my head explodes! :-)

Stacey :-)

[Guest Mary from OH]

{{{{{{{{Stacey}}}}}}}}}}}}-

Hugs to you!! You are where I was about 8 or 9 years ago. I dragged (or my husband did) myself from specialist to specialist trying to find answers, just PRAYINT that someone was smart enough to make me feel better or at least listen to me long enough to do the right tests so that they could figure out what was wrong with me. At that time, I did not know that I had POTS.

Unfortunately, I think you hit the nail on the head. It's this $%^& disease!!! POTS is a crazy animal!! And most drs. just don't know what/how to do with it!! The sad/bad thing about that is that many people like us suffer greatly in the process. Do I have any answers for you? Probably not. Any majic pills? Probably not. I do know that in my case, my MAJOR pain was in my lower right abdominal quadrant. The ONLY thing that helped AT ALL was an anti-inflammatory medicine called Asacol. Interestingly enough, my sed rate and other markers were/are high as well. I personally believe that the inflammation process is a HUGE part of POTS. I think it is one of the components that they don't understand. I think that it attacks different parts of a person's body - ex- gallbladder, appendix, intestines, etc. I think that different specific anti-inflammatories (along with all our other meds) are helpful in treatment. I also think that's why a lot of us have FMS too.

Anyhow. I've rambled. One thing I know. It seems that POTS spells, especially the BAD ones, go in cycles. I was "deathly" ill for about 1 to 1 1/2 years. Then I gradually got better to where I'm "functioning" on a day-to-day basis. Not perfect, but definitely not "dying". Well.... With the exception of my BAD migraine days!! LOL!!

I pray that you can find your "majig pill". I finally gave up on the drs. I had the Asacol which took away the severe pain and then I just slept. And waited. No one could help me and I felt no one cared. Eventually, I gradually started feeling better. It took a long time. But I think once I "gave up" searching for an answer, somehow I was "ok". If I would have known THEN I had POTS, I could have been on more medications that could have sped up the process, but they never went down that road. Oh well.

My best to you. Please come up from your hole. We will support you. Just rest and let things just "be". Slowly, you will be closer back to how you were. Work with your POTS meds DRINK, eat salty foods, wear your compression hose and just "be".

You've been through so much. Just "be". It's ok.

Love you!!

[morgan617]

Stacey, sorry about all this. All of my other docs have just referred me back to my primary, so the two of us just deal with stuff now. I would think an elevated sed rate would send up some red flags to a rheumy, but mine did the same thing. So I just don't know what to tell you. There are so many good doctors out there, we just can't seem to find them, or they get burned out because they are so good. I decided a long time ago there is no magic pill (about a week har) but my primary and I just muddle through. I tell him I am sorry and he says he is sorrier, because he is just stumped. His support gets me through, so even if you just have one good one, it helps, even if he can't do much. I think this illness just has so much that overlaps, it makes specialists a little nervous to treat their end of it, for fear of affecting some other part. Not to play devil's advocate, it's just the way it is. I really don't think good doctors want to make someone worse and with us, you never know what's going to make us worse. A nephrologist told me, he completely believes me, but has no idea how to help me. I appreciate that a lot more than the you're crazy routine. The bad docs are the ones who label, the good ones will just tell you they don't know. Even Karyn, who IS a doctor has been treated like crap by some of her own peers. So it's not just those of us who aren't supposed to know anything. It sounds like you at least have a nice primary, so hang on to that and your little spoon. morgan

[Ernie]

Hi Stacey

Sorry you are having a bad time.

I just gave up on the miracle pill a few weeks ago. Took many months of going to different specialists before getting there.

I hope things will settle down soon and that you will feel better.

Ernie

[Roselover]

I've only had my diagnosis since for 9 months, but I have been told the same thing - even by specialists who claim to know about POTS and even treat a few POTS patients! I echo your comment - my poor primary. She feels like she has failed me.

Right now I am talking to one of the specialists I've seen and my primary about finding someone who would be willing to learn with me and help me follow treatment advice and help get me into Mayo for a workup and treatment plan. I'm trying to encourage them that I understand why they are unfamiliar with POTS but that I need a doctor interested in learning with me. Doctors have a hard time admitting that they "don't know".

Mary--- I am curious about your comment about you abdominal pain. I posted a question about this and your expereince sounds similar to my sister. How did you figure out it was POTS and not some other problem? Have you heard of others with this kind of problem?

Stacy-- I hope you can find someone who will help you with treatment too, but I also hope this forum helps you to follow Mary's advice. I know I will be trying to, too! It's really hard to face the possiblity that this can't be "cured".

~Roselover

[Guest Mary from OH]

Roselover-

I sent you a personal msg so that you could ask me any questions that you would like to!! Feel free to ask away!! Between me and my daughter, I should be able to cover it! We've both been through the wringer GI wise.

Take Care

[LindaJoy]

Stacey, I am sooo sorry you're having such a rough time right now. I know where you are. It took me over 10 years of specialists and tests to find my POTS doctor and get my POTS diagnosis. Now, I'm on another quest for a family doctor who knows about POTS and will talk to me about it!! Hang in there. I know it's hard. I've been down with this latest bout since the end of February, and it gets more frustrating each time I can't do something that I want so badly to do. I just want to give up. But, I know I can't, and you won't, either. You're strong and have support, here and at home. Know we're here to listen and support. Take care and hang in there, Stacey.

Linda

[StaceyYount]

Thanks you guys! You know my husband and I for months will sit here with the status quo and then we think well lets investigate and we do and we make the doctor rounds and then you see what happens. I too have had this about 10 years got diagnosed after about 2 years. Have been searching since then so I know what you are all saying. Thanks it just gets so frustrating.

Of course when it rains it pours, now gyn problems and off to see a another doctor. Ah well we will see.

Off to family guy tomorrow to see what next plan there is or bdck to staus quo for awhile to recover from sooooo many doctor visits!

Thanks

Stacey :-)