I am incredibly frustrated. I went for my testing on the thirteenth of this month. I had the ENG I think that is righ I am having so much confusion right now. they stuck fine wires in muscles and shocked them. I also had little electroded attached to me and they had me lay down and the had me stand up and reattached the wires to the electrodes to get the reads with me standing right away. We did that a bunch of times.
I told the neuro about my GP suspecting that I was having atypical migraines and he agreed that it sounded like that was what they were, he felt the anti seizure meds I am on are probably keeping them from having pain, but are not strong enough to actually prevent them he suggested asking my prescribing neuro to up the does so I did and he dis no good results as of yet.
I am feeling frustrated because he told me that day he would have results to me and my GP by Friday or Monday at the latest that was a Wensday. Its now two Fridays past when I was promised I have called the clinic repeatedly and been promised each time that they would call me that day with the results and they never have. Fume. I have no idea what else to do withing the perameters of good manners. I will call one more time today. This seems more than a bit ridiculous.
You are thinking, I believe of an EMG, likely done with a nerve conduction study. An EMG test electrical muscle activity. The second test you refer to sounds like you may have had EKG leads attached and a tilt table test performed.
Were you able to get your test results? You might see if you can go in and pick up a copy of your test results, so long as the neurologist signed off on them. If he has not, you might ask to speak to the office manager and report the matter, including promises that don't pan out and the doctor failing to get results to your primary care physician and yourself.
I feel bewildered and not sure I got good answers. I called and the receptionist told me she thought it was terrible I was getting the run around on my testing and that the Dr had not figured the results yet the nurse told her. I am not kidding I had no sooner hung up the phone and they called back and said oh you are all fine nothing to worry about we will send a coppy of the report to your GP have a good day and hung up. Did he go to the Evelyn Wood school of speed calibration for testing? Meanwhile I still have the same symptoms and am no further along and feel like I got a run around by a Dr that was too busy to do a decent job on me. What do you thinK?
Because of the run-around you got already, I'd go to their medical records department and get copies of all test results for your own records and review. You can then check with your primary care physician to see if they got everything. If you see any abnormalities that seem of consequence to you noted on your tests, I'd ask your primary care physician for a referral to a second opinion doctor.
I absolutely second what Surgi has told you. You have a right to your medical records. You want to make absolutely sure that you get the full records here and not just the doctor's report/summary. The full records will include EKG tracings (if, as suspected, that was some form of tilt or "poor man's tilt" you had conducted as part of your workup), which is to say there should be raw data and probably graphical data, not just text if you get the FULL medical record. It is possible that they will charge a fee; this can vary, but is less likely if you check "continuity of care" for the reason that you are getting the record.
Here is more information on getting your chart/medical records:
If you need help interpreting what you get, let us know and someone here may be able to point you in the right direction. It's possible, depending on what was found, that as Surgi suggested you will need to seek a second opinion.
If that testing was a dead end, that is not the end of the road for you. Negative tests on a person who is sick does not mean "congratulations, you are healthy!" It means "bummer, we failed to run the proper test to locate your problem." Any doctor who presents the results otherwise is misguided. Yes, you can be relieved if you get negative test results for something nasty, but you still haven't found out what IS causing YOUR symptoms, and it is perfectly normal to be despondent about that. (Trust me, everyone in this community has been through *that* emotional rollercoaster at least once.)
It is also of note that an EMG and nerve conduction study only tests certain types of nerve fibers. Autonomic nerve fibers are C fibers; I'll skip the medical mumbo-jumbo (unless someone asks for the detailed lesson) and just say that autonomic neuropathy (along with small fiber sensory peripheral neuropathy) will not show up on the EMG/NCS. Did the neurologist stick your hands or feet with a pin? What about testing your hands/feet for ability to sense vibration or heat or cold? Do you recall any tests like that?
Since you've been (tentatively?) diagnosed with atypical migraine, have they considered referring you specifically to a neuro who subspecializes in headache/migraine treatment? Neurology is a MASSIVE field and there are a BUNCH of subspecialties under neuro; you might do well to find a subspecialist that is focused particularly in headache and migraine treatment to address that in particular.
I am not sure where to start if I leave something out, point it out to me and I will try to get it next time. My first visit He poked me withpins and did the tuning fork test on my feet and hands I was shocked that I could barely feel the darned things. As I told him the day of my testing at the clinic that seems to come and go and it was better the day of my testing, I was not so numb, I do not understand why I can go from not being able to stand putting my feet down in certain positions, then when I move them its like they are one fire horrible. That is all gone for now, I unfortunatly know from experience it will be back. I am not certain that my problem is migrain, it seems to be muscular in my face more like fasculations from below the eye to my jaw. Once it starts it can last a hour to 5 hours. stress,too much input such as a busy store like WalMart a sudden loud noise all of these can trigger it. I refer to it myself as Lawrence Welk syndrome because it has happened several times when my mom has the tv turned to ten decibles to here her favorite show on sat nite.
My what seemed to me to be as you described a poor mans tilt table and I think you are correct showed some crazy lookikng ekg lines at the end of the last test. I figured that I would hear something for sure that they had diagnosed me. Then nothing. I will definately request copies of the tests and if they are not forthcoming I will have my lawyer ask for them since we are going through a divorce he has been gathering my medical records anyway.
I hope I answered everybodys questions. I did some yard work today and had that awful reaction when I go too hot of starting in coughinng getting dizzy and ultimately loosing my lunch. Such a lot of fun. Too bad that neuro wasnt there to tell me there was nothing wrong then. Frustrating. Thank you both.
Did they diagnose small fiber sensory peripheral neuropathy in your feet based upon the pins/tuning fork testing or do an epidermal nerve fiber density biopsy to follow up on that testing? It really sounds a lot like small fiber peripheral neuropathy from the description of the coming and going nature of it in your feet and the feeling like they are on fire ... very typical of that type of neuropathy. If you don't feel that that was properly pursued, I would definitely seek a second opinion. There are NUMEROUS different potential causes for peripheral neuropathy, and if that's the problem you need a thorough workup to rule out various toxicities, deficiencies, and diseases which could be causing the neuropathy.
Heat intolerance is very typical for any type of autonomic dysfunction. (As is exercise intolerance.) That is my best guess as to why you were ill from doing yard work—heat and/or exercise intolerance.
I don't know for sure about the fasciculations in your face, though I can sympathize with how troubling such a symptom can be. I had fasciculations in my eyelid for about a month recently and it about drove me up a wall. I knew the factors which were contributing to it, but none of them were under my control. It did eventually go away in my case, just as oddly as it had suddenly begun. I hope yours either goes away or you find a physician who can help you with it.
Thank you for the reasurance that I am not insane. As I sat on the steps at my soon to be ex's house trying not to be sick. I kept thinking who does this who cant manage to do half a hours yard work for heavens sake and it is not even hot today? Why cant I manage.I didnt want to embarrese myself by being sick infront of the person coming to pick up my plants with the truck but I did and then I felt just horrible, then my ex had all sorts of lovely things to say and it was just the most worst immaginable scene I could think of. Made me want to go and hide in the basement again.I really dislike that man immensely. I have heard he is not feeling well and I am trying to be kind to him, because hey when you are sick it really is horrible being alone and having no one to turn to, but after a experience like that ...... it is difficult to remember the golden rule. He tossed me out because I was sick. sometimes karma is really amazing.
The fasciculations, thay make me feel like I have to become a hermit , they look incredibly odd. i cant go out when they are going on. Could they be from a migraine? i feel odd when they happen, Sometimes I do smell cigarette smoke before them which is my signal for a seizure, but nothing happens. I just feel odd.
Nobody diagnosed anykind of neuopathy in my feet or hands which seemed odd to me, because they are obviously not normal, at least not to my knowledge. My lawyer has my records and is going to give them to me after the divorce is final. I have never been able to get them from my Drs. Good question as to why I have asked they have said no. I have said Hey I pay for all of the testing in those records I want copies and they simply have refuseds how can they do that? I am not mental or anything or hard to deal with they simply wont let me have my records. Well I will have them at last.
If you live in the US, it is illegal for them not to give you copies of your entire chart. As I said, they have the right to charge you a fee for copying it (per page ... which can get costly, unfortunately, depending on how many pages it is) ... but you have a right to your own records. Do you have any idea why your lawyer is holding them until the finalization of your divorce? Is it just because s/he needs to use them and has the sole copies of them (i.e. for practical reasons, and not because you're not "allowed" to see them before the finalization of the divorce)? Could you ask to "borrow" the records for 24 hours from the lawyer so you can take them to Kinkos and copy all of them so you could have them immediately instead of waiting?
Were these tests all done in the doc's office and not at a hospital? Any tests or procedures done at a hospital will have the records held at the hospital's medical records office and you can show up in person there and file a request for your medical records (this also applies to your charts for emergency department visits, surgeries, and inpatient hospitalizations). Radiology (X-ray, CT, etc.) may have a separate medical records desk/office in the hospital and those records are often available to patients on a disc (though the interpretation of the actual scans will be in with your written charts from the regular medical records office). Anything older than a certain date may be kept off-site and you may find that you have to pay some company that the hospital contracts with to copy their off-site archived charts (per page) to get your older medical records.
I think you definitely need to have a video EEG done where they try to capture the fasciculations on the video EEG. Since you know that stress tends to elicit them, you can try to get as stressed out as possible during the video EEG in order to get them to happen while you're there (if they get enough data, they can release you sooner and you may not have to stay a whole week). If a super-loud TV on an annoying channel is what it takes, they'll wheel a nice big TV into your room for you and let you put it on the most annoying channel you can find and pump up the volume. They're pretty accommodating on those wards when it comes to helping you trigger whatever it is they're trying to investigate. I really think if you get to a thorough neurologist, they can get this all checked out for certain. While migraines can have auras just like seizures (like smelling something that isn't there), there's nothing in what you describe that indicates that it is NOT a seizure, so it's unclear to me why they haven't ordered a video EEG yet to capture it.
I had to go to my GP a few days a go to see him about a unrelated matter. I asked if he had recieved the tests results from the Neuro yet and he said yes. I explained to him the odd time frame of the finishing of the results and asked if he would feel good about that if he was me and he shook his head but of course could make no comment. The look on his face spoke volumes. I asked what he thought and he carfully said well it is his specialty. I then asked if we should proceed with blood work to see if I had auto immune dysautonomia. Which is easier written here than said that day. I could not put two coherent words together. I couldnt even think of the work aphasia to tell him i was having trouble.
He said He had found a place to send bloodwork to for the testing but I would need to present ti to my insurance company to make certain they would pay for it before we did it. So I will wait to find out what he has on that.
I dont think there is any reason my lawyer needed to specifically have me not have access to my records untill after the divorce he just needs to have them until the divorce is over incase he needs somethings from them. He does not have anything from this last effort.
Man how long does it take and how many kinds of autonomic dysfunction are there? If one Dr says you dont have it does your insurance company start rebelling when you are still testing for it?
As far as the video EEG I will ask my regular neuro about it when I go for my appointment in June. I agree that is could be a seizure of a different horse because I feel so odd before and am so debilitated for days afterwards, similar to a seizure. I will keep chipping away at them. Thank you for your suggestions and help.
No, I don't think you should run into issues with your insurance due to one contrary opinion; if that were the case we would hear of MANY examples of that here in our community. Trust me, it is completely normal when you are trying to sort out something as complex as a rare disease diagnosis to run into some "hemming and hawing" from one or more of your doctors as well as some flat out conflicting opinions between different specialists. You're sort of running a gauntlet when it comes to getting a diagnosis, and hopefully that's something we here in the Dysautonomia Community can help lend you support with so you don't feel as though it's driving you batty. You're not the first to go through this and you won't be the last, even though it can feel like you're on your own going through some parallel universe where doctors are either clueless or cruel and you as the patient are sometimes expected to be the one to have the expertise and the answers.
Hang in there. Hopefully things will pan out with the autoimmune testing; it sounds like you're at least inching forward with that. I'll look forward to hearing an update from you after you ask about the video EEG as well. Just keep taking it one step at a time.
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