Update

[Jackie]

Well for anybody who is interested I had my long-awaited appointment today with the new doctor I found. She is a pediatric specialist but does treat adults with NCS/POTS.

I guess I'm a little confused so there isn't really much to report. I'm still trying to process everything. Apparently, my tilt test done by Dr. Grubb was negative because of the 20-beat increase in heart rate. I guess I knew that but didn't...I mean I knew the tilt did not show the excessive increase in heart rate that had been witnessed in the ER and in Dr. Grubb's office on his examination (40-beat increase from sitting to standing) but I believe(d) that Dr. Grubb was treating me for POTS and still believe he is, but the new doctor seemed a little put off by the test result at first and said something about miscommunication and that she only treats patients with NCS/POTS. As the conversation progressed, I perceive that she recognized and acknowledged that I do indeed sound like I have POTS but she went on to explain why she would not be the proper person to treat me (she said I needed more of a PCP or internist to look into questions I have about seizure disorder, brain/spine MRI, autoimmune diseases, etc.) and also questioned why I was coming to see her if I am seeing Dr. Grubb.

She really is a very, very nice lady and she, an assistant in her office (and a medical student for audience by the way) spent greater than 2 hours talking with me and they were all very nice and informative. I was not examined in any way however which is different than I thought would happen and really come away with nothing to report except that she is going to take the time to review all my records, medical history, family history, and lab tests, and questions I had prepared for her and write me e-mail and give me suggestions. This I guess is at least more than anybody else has offered to do. She pointed out that I need a PCP to look at the whole picture and explore these avenues I have questions about and put all the pieces together so to speak (which is exactly what I know I need and what I thought I would find in her and evidently she is not the one to do this but at least she is also going to brain storm for names of PCPs to suggest for me). In the meantime, she suggested I drink 20 ounces of fluids an hour (doesn't this sound excessive?) and salt load and follow up with Dr. Grubb. She said I am going to be very difficult to treat because I'm highly sensitive to medication from what I told her about my medication reactions. I suppose that is about it really. I'm not sure what to think. I'm glad that I got to meet her and I'm honored that she is going to take the time to review my records and give me some direction, especially since she herself has the condition and so do others on her staff and her patient base, but honestly and basically I feel I am still at square one still. So, I cried a little on the way home because I realize it is another dead-end street in a way and I'm confused now about the tilt results and feel I should call Dr. Grubb's office and ask whether the technically negative tilt means I don't have POTS after all or what. (Ever feel as if you are in a bad dream that just keeps going in circles?)

I guess overall I feel like the things I've been through are too complex in some ways to even explain and re-hashing it just brings back all the sadness and confusion talking about it for so long and it is hard to communicate so much even in that amount of time and basically to me nothing makes sense and healthcare is too fragmented and I'm starting to feel like not bothering and just suffering in silence from now on. I don't have the energy to keep just going in circles and repeating my story. She encouraged me about going to the specialists I need to see and having things ruled out and then having a good PCP to evaluate all the info...bright idea huh?! and that is great and true if I can find one but the bottom line is also that at least to me it makes me look like a hypochrondriac or something walking in with this big list of things I want ruled out or questions I have like I want to have something wrong with me and this is what I think doctors think when you are "advocating" for yourself. So, you either advocate to find out what is wrong with you at the expense of looking crazy or stay home and learn to live with it and keep the questions to yourself and just feel bad and feel crazy anyway. What is the answer?

I knew I had my hopes up way too high...I really thought this was going to be a doctor who would instantly understand and have some brilliant insight into something different I could do to help myself....just take me under her wing and make it all better. Well I've awoken from my dream now. I honestly totally and sincerely respect the heck out of her and am very thankful she is going to write to me and tell me what she thinks after she has gone over everything but other than that, well I'm just feeling like I'm all alone again to figure out what to do to feel better. Maybe I should go to medical school and just treat myself? Yea right...I can't even hold down a full-time job.

Oh well, enough of my sob story. I will choose to look on the bright side. Maybe she will have some good suggestions by e-mail and when I go back to Dr. Grubb I can move forward by talking to him about trying something new. The thing I have a problem with is be given a medication to try and being left blowing in the wind when there is a problem and that is basically what he did to me...nurses never return calls, etc. This is where I suppose the PCP comes in...wish I had one who could help but I don't so here I am. So, I guess the first place to start is a new PCP, go through the whole story all over again, ask for tests to be done (basically be the doctor instead of the patient) and then hope the pieces will come together. I simply want to know why I can't tolerate calcium and what I'm to do about the osteoporosis then since I cannot and is the osteoporosis what is making my spine and legs hurt so bad and what can I take for that since ibuprofen and aspirin make me bruise easily. I have a high EBV titer...do I have chronic fatigue? I hurt in my spine and legs (do I have fibromyalgia, arthritis, osteoarthritis, rheumatoid arthritis or damage from the mutiple car accidents I've been in)? All these things run in my family. Is this the beginning of MS? My sister has MS. Am I simply in pre-menopause and hormones will help? What is the deal with the muscle twitches, aversion to blinking lights, brain fog, etc....seizure disorders run in my family...I've heard there is a type of seizure disorder that causes panic-type symptoms (focal seizures)...is this part of the picture? I asked about cutting the beta blocker in half because of the low BP episodes and some depression and fatigue from it and she said it sounded like I need to take an additional at night because I feel tachy at night when it wears off....never thought of that...guess it is on the list of questions for Dr. Grubb (though I think I want a divided dose...not more and more) ughhh anyway.

Am I the only one left to themselves to research and question and try to figure out what to do? Does anybody else have a doctor that gives them something to try and once tried if it doesn't work or makes you worse leaves you to suffer through it without explanation or further assistance until the next appointment possibly 6 months down the road or find help elsewhere? This is what I feel Dr. Grubb did and my PCP is worthless so I'm not sure where to go from here.

Anyway, hope everybody is having a good day. The only good thing about today is that I don't have to work...the house however beckons to be cleaned...it never ends! Mind over matter I suppose is the answer right...I'm not sick...my heart is never tachy...I never feel palpitations...I am completely at peace...I am strong and healthy and have bounding energy and concentration...my feet are not blue...my hands are not cold....I am well...I am not dizzy...I feel strong...I can do anything!

[hilfgirl33]

Jackie, so sorry things didn't go the way you had been hoping, I know how frustrating that can be. I am very lucky to have my cardiologist (once I finally found him) because his daughter had POTS and Chronic fatigue syndrome. He said these go hand in hand and I was only missing one marker to be dx with chronic fatigue as well. He manages all my stuff except the female stuff (which I wish he would too because my gyn is CLUELESS and doesn't have the time or ambition to care).

It sounds like this woman does care though and hopefully she'll be able to lead you in the right direction. I just don't understand why if she only treats pots ncs why she doesn't feel she's the right person is it because she only treats pediatric patients?

If you had a 40 beat increase with the ER and with Dr. Grubb, it sounds a lot like POTS to me, so don't doubt yourself because of the tilt. Sometimes our bodies may be working better than others and maybe that's why the tilt was negative that day, but on another day it wouldn't have been - I don't know, just speculating.

hope this helps

[Jackie]

Geez, and I realize after all that rambling that what I'm disappointed about is not really explained in a coherent way. It has been a long day.

The thing basically is that I thought that this physician, since she is a PCP to young adults and says she has patients as old as 70 years old and treats NCS/POTS, that she would be like a PCP for me since I don't have one who is actually on top of coordinating my care....who would be good at the day to day management of POTS for the time in between seeing Dr. Grubb. What she said is that basically I need a PCP or internist in addition to Dr. Grubb...in as many words said she was not the person to coordinate my care because she could handle ONLY the NCS/POTS too because she is a pediatric specialist and though works with adults with NCS/POTS is not a specialist in other adult health conditions and therefore doesn't feel comfortable treating adults for anything besides NCS/POTS...if that makes any sense. So, it isn't really like she is dismissing my problems, but she feels I need a doctor who can handle the POTS and more and she is not the one for that since she is a peds specialist and that is where I think all of the confusion was....so it isn't that she is not a good doctor or that I'm not a patient in need of management...it is that what she can offer and what I need doesn't match up. I need somebody who can manage the POTS AND look at the whole picture and other conditions and she doesn't do adult medicine. (The only other thing I can think of is whether she would agree to replace Dr. Grubb as my NCS/POTS specialist maybe and I find another PCP...there's a new question/combination...but she didn't offer that so must feel I should stick with Dr. Grubb...either she thinks he would be better, or she doesn't want me as a patient, or it is those 16-hour days she works and can't take me on....oh well, we will just have to see what she says by e-mail).

Thanks for helping me sort it all out in writing this...I feel better I should have thought it out and sorted it out before I posted..oh well, one of those days. Thanks for letting me ramble!

[Guest Julia]

Jackie,

A lot of people diagnosed with POTS pass the tilt table test. Quite a few POTS patients do not have low blood pressue issues. Hyper adrengic pots can make you real sick. My tilt table test was negative also. Dr. Grubb still diagnosed me with POTS.

I know if they would have given me that injection with the TTT---I most certainly would have failed. There was just no way I could have tolerated that drug---I was far to weak, and would have only gone backwards with my symptoms.

Keep plugging along....................... I know it's terrible---just the thought of going to another doctor is daunting to say the least. Just make sure you have the notes from doctor Grubb when you do find a PCP who will work with you. I'm not to sure about Dr. Johnstone. That's the Doc I told you about when we talked on the phone. She used to work in the same office with the Doc you just saw today. Dr. Johnstone is very nice and does take Dysautonomia seriously, i'm just not sure if she is willing to deal with all the problems we have. I really don't know that much about her to say for sure.

I like her, so i'll probably stick with her---but I won't have her manage any pots related issues. She does not blow you off though , like a lot of other Docs do. I guess it depends on what you want from your PCP. There just isn't much knowledge about Dysautonomia---especially with PCP's who are already established. Maybe you could ask Dr. Grubb about a PCP who would work with him---AND YOU to better manage your symptoms. I know you have POTS---so don't let yourself get confused in that area. The Doc you saw today should know better---I've read plenty of medical journals where people pass the TTT and are still considered to have POTS.

Feel free to call me any time, if you need to talk.

Take Care,

Julie :0)

[Jackie]

I know I was confused about that part with the tilt test, etc., but the more I thought about everything that was said (and there was a lot said in 2+ hours) she did say I'm definitely a "dizzy"...and that is meant in a nice way...my sister said she uses that term a lot to refer to NCS/POTS people of which she is one. So, I guess that she did really believe that I have POTS and didn't blow me off or anything...I think taking all things into consideration that she just feels maybe I have more issues going on that need to be explored or questions answered that are outside her area of peds and in adult medicine that she thinks are better addressed by others besides herself...as to her thinking I should continue with Dr. Grubb and not herself perhaps that is professional courtesy or simply that she has too many patients already? I truly am thankful for her time though which was very generous (2+ hours if not 3) and she is very very intelligent and kind and I'm so glad that she is going to look over the information I gave her and give me some insight into what she thinks if anything significant that hasn't been touched upon or whatever. My sister said she is very intelligent and thorough. How many doctors has anybody met ever done that? None that I've met so far so overall I'm not upset or anything like that at all just disappointed because I like her so much I want to continue seeing her and that may not be in the cards so to speak that's all, but we will see.

[Jackie]

And I also wanted to thank hilfgirl33 and Julia for their support and explanations helping me to understand that the negative tilt might not mean anything (actually I had posted my second rambling story before anybody had posted but it crossed in cyber space and ended up under hilfgirl's!)...so I wanted to say thanks to you guys for posting because you do make good points that helped me sort the TTT issue out. Boy hilfgirl, I'd love to have your doctor! It would be so nice for 1 person to handle this stuff instead of having to go all over town!

[calypso]

Sorry to hear your visit didn't go better, Jackie. I love how doctors make it sound so easy in terms of finding a PCP who knows how to deal with a problem like this. My own sister is a PCP, delivers babies and sees thousands of patients every month and she had never heard of POTS -- which is supposedly common, even after pregnancy. She thought I was having recurrent panic attacks, which I used to get in my college days.

So don't feel too bad about it. I'm starting to forget about finding a diagnosis beyond POTS even though I have additional symptoms that fit in more with heart disease than anything else. I'm darn close to turning to Ayurvedic or Chinese medicine, because I figure it can't hurt.

By the way, from all I've read about this stuff, it sure sounds like you have chronic fatigue/POTS. Do you take anything for anxiety/depression? Please don't be offended, but I think it's a package deal when you have chronic illness.

Keep your positive attitude alive as much as you can.

Amy