Discussions By Condition: I cannot get a diagnosis.

Undiagnosed and Frustrated

Posted In: I cannot get a diagnosis. 13 Replies
  • Posted By: sznnrk
  • December 6, 2008
  • 03:52 AM

I am a barely 40 Year old (Dec 2) white female who is in general good health, only slightly (10lbs) overweight. I have had a history of migrines monthly correlating with my menstrual cycle, however, over the past 2 months, the migraines have increased to 2-3 times per week with much greater intensity. I take Imitrex for the migraines but sometimes it doesn't work. Starting about 3 weeks ago I began having extreme dizziness upon laying down or rising from a laying down position. This progressed to dizziness on a consistent basis with a general overall "the room is spinning" feeling. I saw my GP because I thought perhaps I had an inner ear infection or fluid. She did an exam and stated that there was no fluid or infection in my ears but did note that my heart rate was low (57). I am not an athlete by any means, but she did say it was slightly lower than normal. So, she referred me to a Cardiologist and an ENT to rule out any inner ear issues she may not have detected. Then, about two weeks ago, right after this GP visit, I started experiencing numbness in the 3 left fingers of my left hand and my lower arm. Also, my lower left cheek goes intermittently numb. The hand and arm remain numb. So, I have been to the Cardio, who took my BP seated, then laying down. My BP plummeted when I layed down. He ordered an Echo and a Holter Monitor, but told me that I likely had an inner ear issue and attributed the numbness in my hand/arm to stress (which is probably as low as it's been in my life). So...I visited the ENT and he did an exam, then did a few other tests, like sobriety tests (touching nose with eyes closed, following fingers with eyes--both of which I passed) and then asked me to put my right foot in front of my left and when I did, I tipped over to the left...freaked me out. Anyhow, he sent me for inner ear testing and an MRI to rule out inner ear tumor. He (ENT) told me the next step is a neurologist. I don't have any test results back yet (except for the inner ear tests, which were all within normal range and the ENT has ruled out inner ear). I will be honest, I'm a little weirded out and beginning to wonder if these symptoms are in my mind. I DESPISE going to the doctor and this is like torture to me having to see all these different docs and the whole waiting game. Does anyone else have a clue what may be going on or do I just have to wait on the results of the Echo, Holter and MRI? Any wise input would be appreciated.

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13 Replies:

  • research P O T S syndrome, or dysautonomiagood luckpam
    pamelasmc 82 Replies
    • December 7, 2008
    • 02:34 AM
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  • From what you've said i doubt very much it is in your mind. Neurologist may be a good idea... maybe tell him someone suggested that he do a romberg's test on you. I too think it "may" be dysautonomia of some kind. I suggest too if you can get hold of a BP monitor.. to use it to see if you have POTS or not (postural orthostatic taccycardia). IF you have POTS.. your heart beat will increase by 30 or more beats a minute when standing from a laying position or increase to over 100 beats per minute due to standing. People with POTs suffer from many of the symptoms you have (i dont know about what could be causing the hand numbness part thou.. but POTS often coexists with other conditions). Most doctors are unaware of POTS and hence research online first and take medical article in with you if you find that you do have POTS. I also suggest if your other tests dont show issue.. to go and see neurologist..as your symptoms could be caused by a neuro issue.
    taniaaust1 2267 Replies
    • December 7, 2008
    • 02:52 AM
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  • Have your doctor check your for a Patent Foramen Ovale (PFO). Don't panic, my son has a PFO. It is a hole in the heart. My son also has migraines, and gets dizzy. He has even had fainting spells. In my research, I have not found any american studies that connect migraines to PFOs, but I have found studies done in Europe that have made the connection. Your doctor may tell you that there isn't one. Do your own research. Check out this website to read up on PFOs. http://my.clevelandclinic.org/disorders/patent_foramen_ovale_pfo/hic_patent_foramen_ovale_pfo.aspx
    Anonymous 42789 Replies
    • December 7, 2008
    • 03:51 AM
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  • Just to let you guys know, the original poster said that she had an echo and saw a cardiologist who took bp reading when transfering from supine to upright positions (i.e. orthostatics). She has thus been tested for POTS. The echo will have ruled out the presence of a PFO. My suggestion to the original poster is to wait. You need not mention the Romberg to a neurologist, tests of proprioception are a routine part of the neuro exam.
    fewd4thought 126 Replies
    • December 7, 2008
    • 09:44 AM
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  • To the OP and everybody else I guess....I will email the site moderator, but I just wanted to mention that I think 'blaze' might be an automated posting mechanism of some sort. In the time that I have checked out these boards, the only post that 'blaze' ever makes is a word for word transcription of the one posted on this thread, regardless of the symptoms that someone is experiencing.Apart from any personal opinions that I have about 'electrical sensitivites', I have a real problem with spamming the board and wasting the time of people who are 1.) asking for help, 2.) thinking about answers 3.) take time to provide specialized knowledge.
    fewd4thought 126 Replies
    • December 7, 2008
    • 10:07 PM
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  • to fewdforthought....BP readings do not always change in POTS. She will have to have the dreaded Tilt Table Test for diagnosis....Pam
    pamelasmc 82 Replies
    • December 8, 2008
    • 00:22 AM
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  • to fewdforthought....BP readings do not always change in POTS. She will have to have the dreaded Tilt Table Test for diagnosis....Pam nods.. Tilt table test is the test which many doctors will do for a POTS diagnoses. I have POTS myself and it wasnt picked up by BP readings.. but rather on the heart rate observations. Also sometimes it needs to be taken more than just the once.. some have recommended the heart rate to be taken at 5 min intervals up to the 20 min mark.. as some get a delayed POTS reaction. PFO's can apparently be missed on routine echos... some are only picked up via saline contrast bubble studies with the echo (The famous Dr cheney talks about this). (im assuming that test isnt done with a routine echo). (im no expert in that stuff but studied up on it online in the past) ................. oh and yeah Blazes constant posts saying the same thing are bothersome. Ive complained myself in the past when lyme gets suggested for just something like a sore toe!!. (if it could be lyme.. i've got nothing against blazes posts). If it helps any.. Blaze has in fact been diagnosed with obsessive compulsive disorder. So this could possible explain the posts as they are. Actually Blaze is being much better than she used to be.
    taniaaust1 2267 Replies
    • December 8, 2008
    • 00:42 AM
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  • I am super impressed with how much lay people know on these boards! In terms of the echo, The PFO/ migraine link is really interesting, major centers in the US are definitely exploring this option more. The chances of seeing a PFO on a transthoracic echo are probably really low, improved with transesophogeal echo, and as you said and are absolutely correct, the gold standard for detection is the bubble study. I don't really understand what is 'dreaded' about the tilt table test ;-) but it is certainly an informative means to elucidate responses to various stimuli, pharmacologic or otherwise. I see that it is a step along the way for many people that have dyautonomias, but I'm not really sure what would guide you to suggest that in this instance. I guess I should also mention that orthostatics are the combination of bp change and the heart rate response, as you change from a lying to a standing position, your bp will drop and your heart rate should momentarily increase to compensate for the momentary drop in vascular resistance. So tania, your diagnosis of pots was made from both of these things, because they are irrevocably connected.thanks for the info guys, y'all are smart cookies!
    fewd4thought 126 Replies
    • December 8, 2008
    • 02:27 AM
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  • P.s. bubble studies detect the flow of agitated contrast material across potential atrial septal defects (PFOs) potentiall shunting using different techniques by pt to vary intrathoracic pressure.
    fewd4thought 126 Replies
    • December 8, 2008
    • 02:34 AM
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  • fewd4thought.Have you had a TTT? I had a positive test last week and it was one of the worst experiences of my life.Pam
    pamelasmc 82 Replies
    • December 8, 2008
    • 03:01 AM
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  • No Pamela, I haven't had a tilt table test, and as a member of the medical community, am surprised to hear it referred to in such a negative way. I am certainly sorry to hear that your experience was unpleasant. When I think of uncomfortable procedures, I call to mind bone marrow biopsies and lumbar punctures, but I will now add this to the list!
    fewd4thought 126 Replies
    • December 8, 2008
    • 03:24 AM
    • 0
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  • I don't really understand what is 'dreaded' about the tilt table test ;-) thanks fewd4thought for explaining the PFO stuff more :) (helped me get a little clearer as i was still slightly unsure about some things). I myself havent had proper tilt table testing for the POTS (thou ive been manually monitored my heart rate from laying to standing and then continuing standing for a while etc hence my "self" diagnoses.. and my doctors agreed with me). My laying heart rate is usually 52-57 beats per minute when taking on waking up... this goes to 91-113 on standing!! (and will still be usually over 100 beats while standing at the 5 minute mark) .. IF that isnt POTS, what is it?? (as you would know, for a POTS diagnoses a raise over 30 beats (some have said 25 beats) is diagnostic for POTS).. mine raises almost double that at times!!). I have also gone unconscious for up to 5 mins (a friend told me i was unconscious for 3-5 mins) just from standing for 15 mins (when i ignored my need to lay back down.. my OI issue is very obvious). My chiropractor has a "tilt table" and hence i can say myself.. that coming up from one of those tilt tables is horrid. My experience of being raised up on my chiropractors tilt table was of collapsing onto the floor on being raised like that.. head spinning and physically shaking from it. I almost went unconscious. It was a truely unpleasant experience as it left me in quite a state and my chiro wont raise that table again with me on it. I think you'd think it was very unpleasant too if you got suddenly brought to the state of near unconsciousness with all the symptoms which go with that. Dr Cheney says that resusitating equipment should actually be on stand by when doing tilt table testing and that several of his patients have actually had their hearts stop with it, as it affects of the tilt table testing can be so bad. (He's a CFIDS specialist.. studies have shown that 50% with POTS also have CFIDS). I wanted to comment on something else in your post but are too unwell (ive probably been upright too long and the heat is getting to me too) right now to post any further.. so will do so when im better some. thanks for your posts here.. it's good to have doctors at this site as their is a real need.
    taniaaust1 2267 Replies
    • December 8, 2008
    • 06:45 AM
    • 0
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  • Yes it is hard to detect a pfo without a bubble test. They were not able to see the hole in my son's heart until they did the bubble test. He went through several other tests as well before they found it. SZNNRA should request one if she hasn't already had one.
    Anonymous 42789 Replies
    • December 16, 2008
    • 11:35 PM
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