HopeSprings Posted June 23, 2011 Report Share Posted June 23, 2011 I'm going to see my regular Dr. tomorrow for my annual physical and figured while I'm there I'll throw some of the stuff I've learned here at him. About MCAD, mitochondrial disease, a few things from the Dinet list of possible causes of POTS and a few of my own ideas. I have been preparing by printing out articles, making a symptom list and a list of things I'd like to be tested for and why. I just went over the symptom list and there are like 50 items on there. Any of else have a lengthy symptom list? What am I thinking??? I feel like I need to present complete information because what if the one weird symptom I didn't mention gives a clue to the whole thing. At the same time I feel like when you do this, they just get overwhelmed or simply think you're nuts. Plus, it's all this rare, weird stuff that he probably has never heard of. It all seems so rational when we talk about it here, but approaching a Dr with it - I'm hesitant. I am also kinda overwhelmed by the amount of information myself - I hope I can clearly and articulately explain all of this to him. It's hard to do when you can't see straight. Yes, I would like a 4 hour urine methylhistamine test please.... and here's why. Sigh... Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted June 23, 2011 Report Share Posted June 23, 2011 My doctors appointments are exactly like that, I bring a list and go over everything. I even email studies and other things I find in between appts. If your doctor is overwhelmed or thinks you're nuts, fire him or her and move onto someone that will work with you. The biggest part of our treatment is finding a team of doctors that are willing to work and learn with you. Good luck with everything, let us know how you do. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 23, 2011 Report Share Posted June 23, 2011 Todd, I keep doing exactly what you recommend---fire, and move on!Naomi, I totally understand about the need to list all the issues you have. It seems if we leave them out, that they won't get the complete picture. I DO leave out my emotional/mental symptoms, like anxiety or fear. Doctors hone in on those way too quickly, so I don't add fuel for that road. If they ask about them, of course I tell them what I feel. I try very hard to keep the list to signs(objective, things they can measure, feel or see) and not too much on the symptoms(subjective). I feel that helps give a good picture, but then again, I haven't found "the" doctor yet. Good luck! Please do let us know how it goes. Quote Link to comment Share on other sites More sharing options...
yuliya Posted June 23, 2011 Report Share Posted June 23, 2011 I just want you to know I feel the exact same way that you do. I prepare all this stuff to say, all the symptoms, all the test I want and then I think the doctor is going to think I'm nuts (most of the time they do), but you know what I would have never gotten my POTS dx without the pushing forward with symptoms, tests and research. Go with all of it, that the only way us potsy people ever get any treatment, just remember 15 years ago they would say we all had anxiety. Quote Link to comment Share on other sites More sharing options...
enko Posted June 23, 2011 Report Share Posted June 23, 2011 Go Naomi! Quote Link to comment Share on other sites More sharing options...
janiedelite Posted June 24, 2011 Report Share Posted June 24, 2011 What I did at the beginning of my POTSy road was approach my primary doc with my symptoms (she was able to personally witness my decline in health which helped my validity). She went ahead and ran as many labs as she knew to check for underlying causes of small fiber neuropathy (I was having burning pain in addition to BP/HR changes). She admitted that further investigation was out of her league but that she would refer me to whomever I'd need to see to get answers. That started my road of seeing about 6 different specialists in a year before a great neurologist got me to Mayo.I've brought studies to her before and she'll willingly talk with me about them. As I said, she believes in the severity of my illness and wants me to be as functional as possible. However, bringing more than a couple of main items for her investigate tends to be frustrating for the both of us because she only has a certain amount of time for each visit (we always run over ). What I've found to be more productive is to bring possible underlying neurological concerns up to my neurologist, immune issues to my rheumy, etc. I have a good relationship with my docs, thank goodness. I think they know that I respect their input, and I'm usually willing to follow any advice they have and I'm respectful of their time. I agree that it's important to have docs who are open-minded and who believe in you and want to help you heal. But it's good to realize that they're human and need time to absorb lots of complex information. It may not be best to bombard your docs with so many serious concerns, but bring your list and ask him/her how to go about getting these questions answered. If he/she can help you then and there, that's great! Maybe they'll want to talk with a colleague. What's important is that they are on your side, trying to help. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted June 24, 2011 Author Report Share Posted June 24, 2011 Back from the Dr. He walked in said, "how are you" and I said "as bad as I was 5 years ago when we first met. I want to get to the bottom of this." He kinda sighed and said, "haven't you seen like 30 Dr's and they can't find anything wrong - except POTS." I said, "yeah but "POTS" doesn't reallly answer the question. There are many things that cause POTS - it's important to get the root cause in order to know how to treat it. Will you explore some things with me?" "Don't you need a POTS Dr.?" "There are NO good POTS Dr's around here and I can't fly to Tennessee or Minnesota - I can barely make it to the supermarket. Why can't we just check certain things from here?" Then he looked at my list of things to explore and I got the sigh again. "Mastocytosis? You need an immunologist. Mast Cell Disorder? I wouldn't even know how to interpet the results of a test for this. Mitochondrial? This is highly specialized. Primary care Dr's don't look at these things." And on and on he went with all the reasons not to pursue it. And then there was the dreaded metaphor - "we're taught in medical school when you hear horse klops, look for a horse, not a zebra." I said, "that horse has been beaten to death -- it isn't my thyroid, it isn't my adrenals -- we need to look for a zebra." Then when I thought all hope was lost he said, give me everything you have - he took all the articles, the list of symptoms, the list of posssible tests to have done and asked me to give him a week to look at everything. He said, give me time to digest it all and we'll go from there. He has an intern? he's training and he wants to sit down with him, look at everything and come up with a plan. He said come back in a week fasting and he'll be taking some blood. He admitted that it was overwhelming (which was refreshing) and said he would help me look for Zebras. Wow, for once, I didn't leave feeling crazy or foolish. Will he probably find the answer? No - but at least he's willing to look. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 24, 2011 Report Share Posted June 24, 2011 Wow!! Great job!! That is a great doctor that will do that. Please keep us informed of what he tests for. Yay!! Quote Link to comment Share on other sites More sharing options...
songcanary Posted June 24, 2011 Report Share Posted June 24, 2011 Nicely played. I am smiling for you Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted June 24, 2011 Report Share Posted June 24, 2011 Sounds promising. Quote Link to comment Share on other sites More sharing options...
lgtaylor100 Posted June 24, 2011 Report Share Posted June 24, 2011 Good for you Naomi. I recently went to a rheumatologist to explore auto immune causes of dysautonomia and he said that dysautonomia is sometimes idiopathic. I don't think that's true. I think there is always a cause so good for you for getting your doctor on board. Quote Link to comment Share on other sites More sharing options...
misstraci Posted June 24, 2011 Report Share Posted June 24, 2011 good for you!!! you spoke up and I admire that. I've always been timid and inferior around doctors but I know I shouldn't be. I'm happy and I hope he finds some answers for you. Quote Link to comment Share on other sites More sharing options...
enko Posted June 24, 2011 Report Share Posted June 24, 2011 I'm happy for you Naomi I do hope that he'll be able to figure out a helpful next step Quote Link to comment Share on other sites More sharing options...
janiedelite Posted June 24, 2011 Report Share Posted June 24, 2011 Good job, Naomi!!! I'm SO glad that he's willing to do what he can to help you. I hope you get some answers. Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted June 24, 2011 Report Share Posted June 24, 2011 All we can ask is that they're willing to learn right along with us, ask him if emailing information to him gives him more time to investigate things. After 6 years I have found a neuro and geneticist just like this, willing to listen and work with me. Good luck on your search for zebras Quote Link to comment Share on other sites More sharing options...
juliegee Posted June 24, 2011 Report Share Posted June 24, 2011 Smiling too Proud of you! Quote Link to comment Share on other sites More sharing options...
yogini Posted June 25, 2011 Report Share Posted June 25, 2011 Awesome! Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted July 7, 2011 Author Report Share Posted July 7, 2011 I went back to the Dr. - they took like 5 tubes of blood, urine and I'm doing a 24 hour urine. I asked for methylhistamine (urine) test and the Dr. goes well we're doing the Serum Tryptase - that'll pick up on anything of that nature. I said no, that's for Mastocytosis. I want to look at MCAD. He goes Oh - well the lab won't do that test. I pushed more. He caved and said ask the phlebotomist. She got on the phone with the lab and was pronouncing and spelling Methylhistmaine all wrong and the lab was saying, we don't do that. I was like, can you just give me the phone, I'll talk to them. So I talked to the lady at the lab, SPELLED it properly and sure enough, they do the test. So then the phlebotomist says, ok give me a urine sample. I'm like NOOO, this has to be collected over time like 4 hours. I think it's being thrown in with the 24 hour urine, which isn't quite right, but it was the best I could do. Am I in the twilight zone? Why not give me a prescription pad? - I'll order my own tests. LOL. Once I get the results, I'll let you guys know what all he checked for. He mentioned a few - mercury, lead, something for vasculitis, something for cryobulinimia?, some viruses, porphyria, mito stuff, 5HIAA, cortisol saliva and blood, and more. I'm gonna feel really dumb when it all comes back normal. Quote Link to comment Share on other sites More sharing options...
songcanary Posted July 8, 2011 Report Share Posted July 8, 2011 You're far from dumb Naomi. Thank goodness you grabbed the phone. Geesh, we are already helping our own doctors, now phlebotomists, too??? I would be just like you and doing the same thing. I love it! Quote Link to comment Share on other sites More sharing options...
Olive Posted July 8, 2011 Report Share Posted July 8, 2011 It's good that he is willing to listen to you and try to help you. What more can you ask for? A cause would be nice, but maybe if he gets on top of this they can get you closer to a cause. Good luck. If you ever make it to Nashville I will help you out. Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted July 8, 2011 Report Share Posted July 8, 2011 Please keep us posted, you did great! I saw my cardio today, I have a crush on him so I always become tongue tied in his majestic presence. Xo Quote Link to comment Share on other sites More sharing options...
hholmes13 Posted July 8, 2011 Report Share Posted July 8, 2011 Good for you Naomi for being such a great advocate for yourself! I could definitely take some lessons from you in this department! I hope something helpful comes from all of this for you. Quote Link to comment Share on other sites More sharing options...
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