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My Doctors Are Sending Me To Several Specialists Instead Of Looking At Big Picture And Making Me Feel Like Liar


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My neurologist referred me to a pulmonologist because the o2 meter has proven useful in showing that sometimes my oxygen does tank. First he had me walk around for 6 minutes slowly and the lowest my o2 ever dropped was 93. That shows nothing though because I said more intense things like stairs cause it to drop. Then he had me doing a laying/sitting/standing b/p check. He thought dysautonomia had to do mainly with your b/p. So he had me lay down for 5 minutes, then sit for 10 (although it was suppose to be 5 but the nurse came back late) and then stand for 5 and my b/p was about the same, but kinda low all 3 times they said. Then he came back and made me feel like I was lying about the dysautonomia and it really made me mad. They didn't even do the test correctly for one and dysautonomia is not all about b/p. I even said I don't have POTS. Ugh. I have to go back in 3 weeks and wear an 02 meter while I sleep (idk why I never said I had trouble breathing in my sleep) and to do a pulmonary function test which I hope shows me what I need to be shown. Idk if oxygen will even help me though. I have a normal baseline (98/99) but it likes to drop into the low 80's several times a day from activities and sometimes for no reason so it's not like a canulla would help that.

Also, the results of my blood tests came back at the neurologists and my carnitine, pyruvate levels, and lactic acid levels came back normal. I asked him about mitochondrial disease and he tested that and now he's acting like he did what he was suppose to do and no further evaluation is needed. He even admitted he knows very little about Mitochondrial Disease although we talked about doing a genetic swab test in the past. Those levels would show normal in most types of mitochondrial disease though and doesn't really say anything.

They are all sending me to so many specialists and doing all types of tests that will come back normal. My neurologist wanted me to go to the pulmonologist and now the pulmonologist wanted me to come back AND he wants me to go to a cardiologist. I'm sure the cardiologist will want to send me somewhere too if there's a specialist that I haven't been to yet that is. My neurologist wants me to get a 72 hour EEG even though we already concluded the seizures from lack of oxygen and not epileptic and he wants me to get a echocardiogram even though my holter monitor was okay. They are also referring me to a physical therapist which I'm happy about now that I'm not going to the chiropractor anymore. I'm so angry. They are all trying to look at my symptoms individually instead of as a whole and are sending me to multiple specialists to do all of these tests that are going to come back normal.I have a month to do everything they want me to do too and I don't feel well enough to run around and do all of this in a month. They yelled at me last time I came back and didn't have all of my testing done too. I can't drive. My husband and brother in law both work and they expect me to have them find a way around their schedules for all of these tests that I don't even want? They need to do something that would explain everything. The only thing that explains everything is Mitochondrial Disease and I still think that's it. The only thing that has helped me at all is the fact I'm taking about 1/3 of the Mito cocktail.

I really want to just say screw you to the doctors and stop going. I'm wasting time, money, energy, and putting up with peoples crap when they aren't even looking at the right stuff. Every test that comes back normal scares me and makes me think they're going to say it's all in my head or something. Of course it all comes back normal too because they don't look at the big picture. I'm just really frustrated and don't know what to do anymore. They are making me doubt everything and wonder if I even have dysautonomia now because of the way he said that to me even though I know there's plenty of people with dysautonomia with b/p that doesn't go out of control. It use to go out of control but stopped around the time I started exercising and going to the chiropractor.

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I understand completely. I have also had docs run batteries of tests that don't normally show abnormalities for autonomic dysfunction, then get rid of me. I have also had docs suggest that even though my TTT showed clear POTS and vasovagal syncope, these are minor 'nuisance' conditions and I either caused them myself by 'lying in bed' (even though they came over me suddenly before I had spent any time inactive), or I'm 'overreacting' to them. I don't know how you're supposed to react when you can't stand for 20 minutes without passing out and frequently have a standing HR of 160, but according to some of them I should be ignoring it.

The fact is, they can't treat us very effectively. When they can't treat something, the only other option for lazier doctors is to look for other potential conditions, or tell us that we should be able to deal with things as they are and we must be hysterical somehow. They used to be the same about diabetes, for flip's sake. If they found a reliably effective treamtent for out conditions tomorrow, we would be treated very differently.

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That is so true. They like to blame the person with the condition when they don't know how to treat it or understand it that well. I should try not to take it personally. When they try to make me feel like a liar it's just them showing their incompetence on the subject matter.

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Hey,

I'm sorry you are finding things so hard right now. I guess doctors are used to being able to just send people for particular tests and diagnose things more easily, and then when someone with dysautonomia comes along they really don't know what to do but they still have to do something.

Also I've heard that things like POTS (Sorry I can't remember if you have POTS?) can be diagnoses of exclusion, so they have to run batteries of tests to make sure that there isn't something else obvious going on that could be causing the symptoms you are experiencing. Could it possibly be the reason why some of your doctors want so many tests done? I mean, I eventually found a great doctor who is really knowledgeable about POTS and he diagnosed me, but it's still like "Go here for this test, and go there for that test....." just to make sure there isn't anything else going on. And it can be kind of confusing and frustrating.

I'm really sorry that none of your doctors seem to help, could you maybe go and see a dysautonomia specialist who might be able to kind of hold everything together and get the right tests done?

I really hope that you manage to get things worked out.

Best Wishes,

Lyla

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Everyone is a specialist now a days, so unless they know what they are dealing with, in which with dysautonomia, they don't, they tend to send you to other specialists to rule out other illnesses, Pulmonologists for O2 issues, Cardiologists for tachycardia to determine abnormal function of the heart, ENT's for dizziness/vertigo for possible Menieres, Sleep Specialists to check for Sleep Apnea, Neurologists for seizure disorder or possible Multiple Sclerosis, Rheumatologist for autoimmune diseases, etc. They are just being cautious. You could have O2 issues with Myasthenia Gravis. Maybe after the Pulmonologist, you should get a referral to a Rheumatologist.

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I know it's frustrating to be seeing all these docs and not finding any positive results but it really may not be a bad thing to be seeing all these specialists. Personally, I'm glad to hear they are sending you to see these various docs. When you're talking about having seizures and turning blue and low O2 sats etc, it really is a good thing to make sure there isn't something that they can identify that could be treated easier than mito disease. As others have said, dysautonomia, mito, are frequently diagnoses of exclusion so that means they have to exclude all these other things first.

Have you had your husband videotape any of these seizures you have? Maybe have him do that, along with showing the O2 sat monitor readings that are low at the time. If you can show the docs those tapes it may make it pretty hard for them to say it's all in your head. Obviously his first priority is making sure you're safe during a seizure but if he can possibly get evidence to show the docs, it may make your complaints more real to them.

Best Wishes!

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I know you're frustrated because I've been there myself. I even told my GP that I needed someone to look at the whole picture and she just told me she'd sent me to a specialist for whatever symptom is bothering me, so she really didn't have a clue.

That said, I think I've told you before, an electrophysiologist is who diagnosed me, so if you go to a cardiologist (which I think is a good idea), ask to see the EP in the group. Any cardiology group should have at least one EP in the group. Mine looked back at my holter monitor results that I had been told were "within normal limits" by my GP, and said "I think you have dysautonomia". So just because they (your neurologist??) said your holter was ok, maybe there's something the EP will pick up on. I went to 10 different doctors in a year and had lots of testing that was normal and I still feel like I'm not at the root of my problem. You just gotta hang in there. I still don't know the reason or cause of my dysautonomia and I've come to realize that I probably won't ever know, but I feel better with my treatment.

I'm thinking you had a referral for Vanderbilt (???). Maybe they can figure it out. *fingers crossed*

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I think that it's great that your doctor is willing to send you to other specialist. If I were you, I would pick our my worst symptom and find the doctor that deals with it first. The only problem with that is that sometimes it belongs to several different dignosis. It's hard to go through all the testing and keep waiting for answers. I have been doing this with my son and I'm still not sure if I have found all the missing pieces.

If exercise helps, then I would continue with what you can do. Taking charge of your diet is another thing that could help. It's normal to get weary and frustrated by doctors and their testing. All I can say is to take it day by day and stick with what works for you.

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@BeforeTheMorning It's mainly frustrating because I don't see the point in any of it. I don't see the point in getting any more tests done, except maybe the genetic test for Mitochondrial Disease. They already told me that's what they think is going on (after I brought it up) now after a simple blood test he isn't sure but he also admitted he doesn't know much about it. I'm just so tired of tests that are so pointless and then getting yelled at for not being able to make it to a million different tests and appointments in a short period of time. I don't feel good and my husband works a lot to be able to support us and yet they expect me to be able to go to so many tests.

@bellgirl I thought Rheumatologists were for joints and arthritis and stuff? I know they're being cautious it's just frustrating because I know that the tests are pointless. They make me feel like a liar when the tests come back negative too. I'm really lucky I've had obvious things happen so that nobody can try to tell me it's in my head anymore.

@Chaos I actually showed him a picture of my low o2 sats and he's like "you don't have to do that. I believe you" but he made me feel like a liar about the dysautonomia based off checking my blood pressure laying/sitting/standing. I really don't understand why my blood pressure use to be crazy around the time I got it and now it's normal after I started working out and visiting the chiropractor. The rest of my autonomic nervous system doesn't work though. My heart likes to go crazy, my respiration isn't right, I have problems with temperature, my blood rushes to my feet, I have all of the symptoms. It made me so mad to have him make me feel like a liar based off my blood pressure. I guess it's because I feel like I always have to prove I'm sick though because nothing is in your face obvious or something people can understand. I actually have not had a seizure in a long time :) I only had 2 which were back to back in the last 6 weeks, and it was about 3 1/2 weeks ago too. The creatine is still helping. I started taking about 1/3 of the Mito cocktail around the time I started taking Neurontin and I haven't really had twitching lately either, not sure which one of those helped. Hopefully they both stay gone lol. Yeah, they told me to video tape the seizures and twitching but they really haven't been happening lately (luckily.) Unfortunately, I'm still struggling with oxygen though and having to be very careful to avoid my o2 sats getting too low. My neurologist believes me about what's going on. It's the pulmonologist who is making me feel like I'm lying about the dysautonomia. I always feel like that whenever I tell someone I have dysautonomia and they check my blood pressure.

@dkd I do have a referral to Vanderbilt but I'm going to have to eventually cancel it. I got the referral based off an insurance I was going to have but cancelled so If I did go I'd have to pay out of pocket and that would be ridiculous. I don't really see them helping me that much anyways at this point. Every time they see I have a referral to Vanderbilt they are like that's good so I'm scared everyone will be mad if I cancel it because it was so hard to get it. I don't know what they expect though, I can't make the money fairy come visit me lol. Good idea. I'll keep that in mind whenever I go to ask to see one of them. Hoping at least since I'm being forced to go to a cardiologist that they'll do a stress test. Nobody will take me up stairs for any of my tests. That's the biggest trigger for me so if they want to see me get sick they should take me up stairs. I can't even imagine how some of you guys feel. I've been doing this stuff for a year and I feel like I'm going crazy. I can't imagine doing it more (although I will be doing it for years probably.) I wish you luck in finding out what is going on.

@looneymom Now that the seizures or twitches haven't really been showing up too much lately I think my most annoying symptom is the lack of oxygen. I can't do anything without feeling like I'm not getting enough oxygen and having to gasp for breath and feel sick. I bet the dizzyness is related to it also. I think that's my biggest problem as far as not being able to be physically active is that I feel like I can't get enough oxygen whenever I do things and have to sit down. The lack of oxygen makes my heart rate go crazy too, but the 02 drops come about a minute or two before my hr starts climbing so I think if the oxygen gets addressed it will make my heart rate more stable. The fatigue is awful too but I haven't tried to even worry about that yet with all of the other ugly symptoms. I'm seeing a pulmonologist now but he refused to use the 02 meter on stairs instead of a 6 minute slow walk. I still have to do a pulmonary function test so I'm hoping that comes back abnormal and he can give me oxygen or something to make me feel better. I've eliminated a lot of processed foods and have been trying to get lots of fruits and veggies in my diet. Exercise is odd. I'm not sure if it's helping or harming. At first it helped, but then it seemed like it was making me worse, but when I stopped I didn't feel much better so I keep doing weightlifting 2x a week and cardio whenever I can (cardio is really hard for me to do.)

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I hope somewhere along the line they have you do a cardiopulmonary stress test where they measure your O2/CO2 during exercise.

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Rheumatologists handle all autoimmune diseases other than MS. There are over 155 autoimmune diseases in all, of which Rheumatoid Arthritis is one. Your symptoms sound like Myasthenia Gravis, so I suggested getting the test done for that particular Autoimmune disease. Because it is a disorder that affects your muscles and cause them to be weak, that includes the muscles around your lungs that help you to breathe properly. I have a friend who has lowered O2 saturation, and she found out she has MG along with MS, so I thought you could even get your Neurologist to test for that. Any doctor can test you for that. My PCP tested me for it...

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The more I think about your oxygen problem, I wonder if this has something to do with your core muscle strength. You mentioned that you were doing some weight lifting and cardio. I can understand why the cardio would be very hard especially if core muscles might be weak. There are some very specific exercises to strengthen core muscles. Are you doing any types of these exercises with the weights? The more I read your post, it reminded me of something that happened to Tyler before he was offically diagnosied with POTS.

. Tyler failed his breathing test. It was the test that he had to take a deep breath and blow it all out. I can't remember what the test is called. However, Tyler had lost a great deal of core muscle strength. The doctors in the hospital thought that Tyler was not trying but my husband and I knew something was not right. Our cardiologist told us this could happen because of weak core muscles or it could be how his autonomic nervous system was functioning because of weak core muscles. This breathing problem did go away for him after he was able to get his core muscles strengthen. Two monthes before he was diagnosised with POTS he had trouble climbing stairs. The other thing I would suggest is to be careful and give your body time to recover. Tyler was not able to exercise everyday. He was only able to exercise every other day and most weekends were rest days. Hope this makes sense and maybe helps.

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I hate this too and that's why I need to see an expert in POTS and EDS as soon as possible. I get bitty checks and tests done and no one stitches the whole thing together. Most specialists haven't a clue about such things and only want to deal with things within their own field.

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@Chaos I doubt it. They only like to do tests that make no sense :( I will ask about it thought whenever I go to the cardiologist

@bellgirl doesn't seem too far out. Could it also cause extra neurological activity like twitching and stuff? It said one of the first signs is normally droopy eyelids though and my eyes aren't like that at all, would that rule me out?

@looneymom Yes, I do some core muscle strengthening activities. I think that's the pulmonary function test that I'm getting on the 16th that I hope I fail so people take me seriously about the oxygen thing, and I'm hoping if I fail it means supplemental oxygen will help and then I will feel less dead lol. Yes, it makes complete sense. That probably has to do somewhat with why I'm not seizing much anymore. I've been taking loads of breaks. I use energy savers all of the time especially since I talked to the neurologist and a specialist in Atlanta about Mito. Whenever I feel out of breath I sit down immediately before my o2 drops too low.

@TCP I know it's like if they send us to all of these tests they will feel better thinking that one of them will come back abnormal but they need to be stitching the pieces of the puzzle together.

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I had droopy eye lids and didn't have it, so not necessarily. It's just a simple blood test, so I would suggest that you just add it to your other blood work.

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Most doctors don't know much about POTS and since they don't know anything, most of the time they blame the patient and say our illness is imaginary. It actually a good sign that your doctors believe you enough to send you to specialists. The problem is that there are very few doctors out there that understand the "big picture". I would try to push them to send you to a POTS specialist - see the Dinet physician list to see if there is one in your area.

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I did and the only ones are the ones at Vanderbilt since I live right outside of Nashville. So everyone here who is a specialist works at Vanderbilt. I have an appointment at Vanderbilt February 5th but I'm going to have to get rid of it because my insurance is different then the one they accepted and I'd have to pay out of pocket

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