I was diagnosed with inappropriate sinus tachycardia (IST)two weeks ago. I'm still not sure whether this is part of the conditions associated with dysautonomia. On some internet sites, it is mentioned along with the various conditions of dysautonomia. My cardiologist (EP) said he wasn't ready to call it that. I just have a resting heart rate that is too high and may suddenly spike but has nothing to do with standing up. I am not suffering nearly as bad as many of those who have posted.

However, I received some very unsettling news on Friday from my family doctor's office nurse. She said that the results of the MRI had done last Wednesday, "showed some changes and doctor wants you to see a neurologist". First, I couldn't believe that the nurse was calling and not the doctor! She was very cold and unfeeling about it. I don't particularly like her any way and after this episode, I really dislike her. I stuttered around a minute because I was shocked by the news and that she was not giving me any information when I did ask a question. I called back 10 minutes later, after telling my husband the news, to see if I could talk to the doctor. He had already left for the day and they informed me that he is off all next week. They want me to see the neurologist associated with their clinic, who I don't know from Adam, and I can't get in there until March 24th.

The thing that triggered the MRI was that my joint pain and bursitis were not improving after 4 months of almost constant pain. Then I developed a burning pain in the left hip area and could not sleep all night. The next morning, I had an episode of double vision and that's when I called the doctor's office to be seen again.

I had an MRI done 5 years ago when I had repeated episodes of vertigo. There wasn't anything abnormal on it. I asked the nurse if the doctor thought I had Multiple Sclerosis (MS) and she wouldn't answer my question. She just repeated "there are changes on the MRI". I have a Master's in Health Informatics and I have been all over the internet trying to match up the few symptoms I have had, that cause abnormal findings on an MRI, and none of those diseases are anything I care to live with. Have any of you had an MRI and had "abnormal changes" observed? Dysautonomia seems to take so many forms and cause so many different symptoms that I am almost hoping that is what it is and NOT something like MS. I am sitting here trying not to freak out but the uncertainty is really wearing on me today. I haven't said anything to my friends here because I don't really know what I have and I don't want to bore them with a bunch of medical jargon that most wouldn't understand if they don't work in the medical field.

I feel very let down by my family doctor. I could have used a little compassion from his nurse, even if she just said something like, "doctor doesn't know what is causing the changes on the MRI, but we want to be safe and have it followed up by a neurologist." I am really considering never going back to his office but writing a letter to tell him why. I also have a degree in Medical Technology and have worked in enough doctor's offices and clinics to know that their level of care is lacking. - Kay

I'm sorry about their lack of care. Don't panic, it's actually a good sign if the doctor doesn't talk to you personally! (in my experience at least, if it was important, the doctor would call!)
anyhow, this "MRI" thing is probably out of his league and he's referring you to somebody that may know what is going on.

We're here for you!

Kay, I agree that the nurse handled this dreadfully. If my doc has concerns, he will see me in person to explain, even if that explanation is that he doesn't know and he is referring me to a specialist. Seems cruel to drop this on you as she did, just as the doc is leaving town.

Good Luck, and try not to work yourself up too much while waiting for an interpretation of the results (easier said than done I know).

Threaten to sue. You have every right to have your medical records, including your MRI and results. This is absolutely unacceptable.

Have your husband call the clinic with you and have him say this is unacceptable and you will seek legal action if you cannot receive quick info regarding your MRI after receiving news on the phone that something was wrong. They listen to men MUCH more than they do women.

You are a patient which means you are a CUSTOMER. Do not forget this. You are paying them for their services and right now they are not living up to YOUR expectations.

Ask to speak to the head doctor of the clinic. Physically go there in person with your husband if you have to. This is absolutely unacceptable behavior on their part. Don't let yourself get pushed around.

You should NOT be told something is "abnormal" and then be expected to wait until March 24th to find out WHAT is so abnormal.

Thanks to all of you for your supportive comments. I agree that doctors take men more seriously than women. Its hard to take because I'm the one in our family who took pre-med in college. I talked to my neighbor last night, who is a physical therapist. She was also shocked that the doctor's office handled this in this manner. She said that she has had a good working relationship with a group of neurologists in Davenport, IA, which is about 35 miles away. She urged me to get a 2nd opinion there no matter what the neurologist here says. I saw an internist in Davenport for the heart rate problem so I'm planning on going to the clinic here and getting a copy of the doctor's notes and MRI report and seeing if she can start the process so I could see a neurologist over there. I was in so much pain that I returned to the family doctor in the town where I live, partly because I had started with him with this joint pain/bursitis problem and because I didn't feel good enough to drive over to Davenport. That was my mistake but it helps to know that you think this was very poorly handled. Through this process, I learned that the clinic here had "lost" the xrays that were taken back in November. My husband gets 4 weeks of vacation a year so he said he will take off whatever time is needed to go with me to appointments.

As nitekitty pointed out, we are customers and I plan to tell others about this incident. My husband works for a petrochemical company and the people who work at his facility have good health care benefits and make very good money. We can afford to go else where with our health care dollars! I'd still like to ask my now former doctor, how he would feel if a nurse had treated one of his family members in the manner she treated me. If no one ever calls them on their actions, it keeps happening. Thank you, Kay

Kay, I am sorry to hear what you are going through. I hope these are not the doctors out of Genesis East, because you were so happy with them.

You are right to find a new doctor, but also to let this doctor know why you are leaving, because you are right if you do not call them on it they will never change their behavior with other clients. I know after I was dx by Vandy, I went and wrote letters to all the doctors I had seen to let them know the mistakes they made. I also sent along the papers from Vandy and literature on dysautonomia. I hope that it may have made a difference in the way they looked at and treated someone else who came through their doors like me.

I can also feel your fear, within the past two years I have had some small changes on my MRI's. I was sent to the neurologist as well. What they seen on my MRI was some newly formed grey matter areas that had never been there before. The neurologist ran a whole bunch of tests but could not come up with a certain dx. He did say that it was not MS (which was my biggest concern because my youngest brother has this)and he also believed it was not happening due to the dysautonomia. What he ended up saying in the end was that he thought it may be scar tissue from previous TIA's, but really didn't know. He then went on to tell me that we would watch to see if these grey areas grew or if I developed more of them over the next couple of years. I have not had another MRI yet, my next one is actually scheduled for April 1st. (hopefully everything will be the same, it scares me that they are doing it on April Fools Day!)

Anyway, I hope your MRI changes are nothing bad either. Hopefully, they are just some minor changes that your doctor wants a specialist to look at, maybe a neurologist will find these changes to be nothing. I'm sure if your doctor thought it was something to really worry about he would have called you in to his office or spoke with you himself. (when my brothers MRI came back with changes on it his doctor called him the same day he had it and had my brother meet him back at the hospital. There they did another MRI to make sure what they were seeing and then they admitted him to the hospital to start treatment options.) Your doctor may even think that there is nothing really there, but he is having you checked out to back himself up. Hopefully this is the case. However, in any case he should have handled it better!

My prayers are with you, try not to worry to much. Stay in the hear and now moment and remind yourself that if it was serious your doctor would have called or admitted you into the office especially if he was leaving for a week.

My best to you,
Joline

As others have said, I wouldn't be too concerned with the MRI changes if the nurse called you and not the DR.

I had changes on my MRI a few years ago. My neuro. compared it to one I had had a yr.and a half earlier and said that my pons and my cerebellum were shrinking slightly. Then 6 months later a different facility did another MRI and did not compare it to any previous MRI and said that my brain looked fine. Go figure! Who really knows. My physical therapist said that as we age our brains slightly shrink anyway. He said not to worry about it. Must not be anything too serious. I haven't gotten any better. I am still here though.

I wouldn't worry too much about it till you know something specific.