Doctor Dance

[lifesaver]

My neuro's office was supposed to call back today. I didn't think they would and they didn't disappoint. It is the office staff. I am calling back tomorrow and making sure she can spell my last name and has my phone number. Frustrating dealing with her.

I did call my cardiologist. I had an angiogram in April and everything was fine. We think it was a bad episode of Trigeminal Neuralgia. My heart is fine, I was told. However, I am having chest pain and tired of living with it and need someone to look at my variable blood pressure. I think my new type of headache just might be from blood pressure problems. They are so bad I throw up and have edema with them. Don't go to the ER because there is not much they can really do and it costs us an arm and a leg. My fear of passing out when out in public is keeping me pretty homebound and recovery from the headaches takes a few days before I feel semi-human again.

Hope that seeing my cardiologist doesn't upset my GP or Neuro but I am tired of having no treatment whatsoever for this and watching my life tick away. The cardio has my angio results and can monitor the mitral valve prolaspe as well. I can have the tilt table results sent to the cardio. Hoping this guy can treat dys but if not, he has the sense and grace to refer me to a doctor who can.

I am worn out and frustrated,

lifesaver

[firewatcher]

Don't worry about "upsetting" your GP or neuro. I had four different endocrinologists scratching their heads at the same time over me! If it takes going to a different doc to find answers, you do it! They are concerned about your health, but not as much as you are! One BIG exception to all this: YOU have to pick a "ring leader" over this medical circus. Someone (does not matter which one) must know everything and everyone you are going to, so that there is oversight and you don't hurt yourself. Don't take any drugs without consulting the doc in charge! A lot of these mix badly and you do not want to screw up any of your body's systems any more than they already are! Keep a copy of every result for every test they ever do as well!

[ajw4790]

I wouldn't really worry about upsetting them either. Give the drs office enough time to respond, and if they don't respond in a timely manner it only makes sense to follow up and see what is going on. Like you said they may not have all the necessary information etc. or the nurse or person that returns these calls may be out sick or something. More than likely though they just are not getting through their calls etc. very effectively... It makes sense to have both a neuro and cardio if both systems are affected. The key like firewatcher said is making sure that one of the drs is your main or "go to" dr, so there is someone to coordinate things.

My recent fun trying to get assistance with a drs office has also been eventful. For whatever reason my PCP's nurse keeps having people filling in for her, which means she has not been keeping up with everything or returning calls in a timely manner. I have been waiting on info for like three weeks, and made multiple calls. Yesterday I talked to one of the nurses fill-ins, and of course she didn't know anything, but I told her to get me on the call list for today. Also, I told her to have the dr. call me, because I knew some of it was up to him. I have only seen him once, but I figured from the type of dr I pegged him as that he would call me. Amazingly, after calling mid-morning he called me early afternoon! I have had very few drs like this, but figured if I have one I need to try to get him to help out with things. A lot of my issue is that I moved and he is my new PCP, and his staff has yet to get to know me. And my chart evidently doesn't represent me well yet! The staff seems to still think I am the run of the mill twenty something. I wanted an appointment to see an ophthalmologist, and they sent me to an optometrist! If I wanted a regular eye exam I would just walk in somewhere or make my own appointment, why would I have my dr. make it???? Then it took 20 minutes and three people talking down to me and like I was crazy to get them to understand I wanted to see an MD, not just get an eye exam. The dr office didn't actually send a referral either... So, I discussed this with the dr. and will discuss with the nurse that we need to make sure that they realize I am requiring specific medical treatment, and not just average treatment. It can be SO frustrating, and like beating a dead horse to get anything across to medical staff if they are not willing to open their eyes or listen.

So, my long winded point is that miscommunication and lack of follow up is not uncommon, but it means that we have to be our own advocate and if they don't respond in a timely manner follow up. Ask them what is keeping things to see what can be done about it. Do you think talking to the dr. would help. Sometimes the nursing or clerical staff just doesn't understand, and needs some help understanding the situation. Also, with everyone getting sick this time of year, I think it just slows things down because the nurses etc. get sick too, and then they get behind.

Call them and see what is going on. Explain again what you are looking for and why. And do anything that might make it easier, like if they need a phone or fax number that you have or can find give that to them. Then they have fewer excuses to not do what they need to do.

I hope that helps and that you here from them today!

[lifesaver]

I called back today--explained my problems communicating with the phone staff for the neuro/psych department. I got to talk with the nurse. She finally understood to get my file and get orders for the tests from my neurologist. I am clueless to what she thought the other 3 times.

I am getting orders for an EMG/NCV, MRA of my facial nerves looking for nerve compression by blood vessels, and a few other ones I don't really know about other than there are more on the list.

Saw my psychiatrist today. It was encouraging--my depression is better and I am stable. Between my resident and the attending, we talked a bit about my neuro problems. The attending asked if MS had been ruled out or if they thought I have it--seems all my signs and symptoms can be indicative of MS. No brain lesions. He said in a few months the docs should have me diagnosed. I also found out that the neuro who specializes in Dysautonomia is an excellent doctor--and in my opinion a very warm, caring man. (If you are in St. Louis, pm me for his name.)

It was a good visit. All the times other doctors told me this was in my head, even said I have somatization--3 psychiatrists have said absolutely not--those times have worn on me to the point I have wondered if I am making things up and don't know it. Who would want to lie about dysautonomia? Who could lie about it with the testing for it?

Needless to say I am now quite gun-shy with new doctors and even when I have to call about things going wrong with my body.

Thank you for all the input ajw and firewatcher--it helps to know others go through the same thing and that it is ok to keep calling. My bad experiences make it so hard to even want to call and I probably suffer through a lot of stuff that I should call about.

HUGS and thanks so much,

lifesaver