making a difference! dr in scotland thinks someone

[persephone]

Well, as it says on the header- my former GP, the one who let the neurologist say I was "anxious" before I headed to Professor Mathias for my REAL diagnosis RANG me completely out of the blue yesterday.

Bearing in mind I'm now 500 miles away from the surgery, this was utterly unexpected.

I felt quite shaky talking to her- I'd put my trust and faith in her and I felt really betrayed when she provided the guy with ammunition to try and say my problem was psychological- she found something in my notes from when I was 15 (9 years ago!) that said I'd had counselling after my Gran died- ah, that explains it- 9 years on when you faint so much you break your foot- it must be that your Gran died, you must be crackers! yeah, anyway...

So: she asked what drugs I was taking for POTS now, and how I was getting on here at home. Because they think someone else has the same symptoms.

My gut reaction was: AMAZING! that's so good that they've rung!

But now i've had a bit of a chance to tihnk about it, I think Why didn't they consult someone about me when I was sick? Why were they prepared to palm me off? I know thye'd nevre heard of POTS back then, but really- surely this woman knew- my face would go ashen and I'd collapse in front of her with a tachycardic pulse and really low blood pressure- how could that be stress?!

I suppose it's good that they're learning to make connections. I just resent the fact that I've had to go to **** and back in order for thme to be able to do that.

I feel a bit selfish for feeling this way, to be honest. It's almost as if i wish someone else could have had it before me so they'd have known what to do- it could have saved SO much time and energy!

I think I'll just HIDE today

[goldicedance]

Yes, I would certainly be annoyed, angered and frustrated by your former doctor. However, any assistance that you might be able to provide to someone else will only further push these doctors to look beyond the "anxious" box for a diagnosis and treatment. Have you tried bombarding your doctors with studies about POTS that have been done in the United States? Back in early 1996, my internist was doing so catch up reading because her office was closed because of a water main break. Somehow she came across one of the prioneering articles by Dr. Low about POTS. And, bling...the lightbulb went off. She was particularly intrigued by the reference to the subset of POTS patients who are hypertensive. At that point, she tracked a doctor down who was working on clinical trials with midodrine. And, the rest is history.

So, you might want to consider yourself an accidental pioneer! Perhaps now you can get the doc to remove any reference to anxiety-produced symptoms. By the way, what does Dr. Mathison say about anxiety and POTS?

By the way, my daughter has now made it to London, found housing (ouch), and is completing the induction week at London School of Economics. I know how stressful starting a new university can be in a new city and even country. Keep up your spirits!

Lois

[briarrose]

Hang in there Persephones I hear and can relate with you 100 percent in this area! I left you a note on my post from yesterday. I would bet that your docs have probably seen more than just 2 people with this problem.

[becky]

ah the good old, member of your family died so you are fainting diagnosis! i had that too. ****heads!!

well, does that mean that she will change your notes to say that you haven't got anxiety issues?

it's great that she thought of you to call when she had someone else with the same kind of symptoms though, maybe that will stop someone else being treated the way that you were. So maybe you have actually really spared someone from all of the stress and horridness youv'e put up with recently, i think that that is ace, that cardio must realise where they went wrong and at least they are trying to fix it. at least this patient can be assured that they aren't on their own with this.

love you lots

becks x x x

[morgan617]

One of the reasons I went into the hospital was because my primary works with the residents, so he always had a gaggle of them inspecting me. I put that to good use. I told them straight up....remember me when you get a patient in your practice that has all these weird symptoms and your first inclination is to blow them off as a nut case. Reach into the recesses of your mind and remember me and realize there's more to it than you want to think.... learn from me.....morgan

[dizzygirl]

Good for you Morgan!!

Perse..I understand you felings.... I would be upset too.. I had a problem with that whole..grandparent dying... My grandma died June 6th,2002... of cancer.. and I was with her when she died.. and once docs learned of this.. they automoatic drummded up the PTSD thing.. and that all my symptoms where anxiety related...Lets for forget about all the Hospital trips with HR thur the roof!!

any way perse I feel your Pain!!.. but on the flip side maybe you will be helping another potsy person... and that in of itself is cool!

[melly4]

I'm glad they've seen where the screwed up with you, but I can only imagine how angry you are right now that they had to put you through so much anguish. I, too, have been given the "family loss, thus anxiety disorder" diagnosis, because the GP noted that I have had 4 miscarriages. My oldest son had his tachy and BP swings blamed on peer pressure and social anxiety because his stupid doc saw that he was homeschooled. He failed to ask about my son's other activities, like the fact that he is very involved in his church youth group,that he takes taekwondo 6 days a week, teaching the younger kids 3 days a week, and participating in huge tournaments in front of large groups of people. My son has no social dysfunction whatsoever. Very laid back, until his symptoms unnerve him. I don't mean to doctor-bash, but some docs cannot see beyond their original perception of somebody or something, and they'll stick to their original diagnosis come #### or high water!!

Hopefully, your docs are educating themselves better now and can help you and remove the "crazy" tag, but I'm sorry you had to go through so much to get to this point.

[Poohbear]

Sorry I'm so late chimming in.

I do understand your feelings and I also think that maybe you did save someone else from going through all that you did so there is some good that came out of it.

Maybe you would feel better if you could call or write this Dr and let them know you were hurt in the past by their treatment of you and that you are glad they don't seem to be treating this other patient the way you were treated. Then, you could "respectfully request" (you have to be nice about it even though it's their stupidity) they correct your records. If you get a positive response maybe they would be open to your educating them further.

Be gentle with yourself. It is a lot of emotion and hurt feelings to heal!