Discussions By Condition: I cannot get a diagnosis.

Many tests no answers for 8 months

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: heathersmom
  • May 25, 2008
  • 09:03 PM

My daughter is 33 years old. She was diagnosised at 15 with hypothyroid and at 20 type i diabetes. In May of 05 she was involved in a car accident that resulted in her hitting her head on the steering wheel. She was experiencing headaches, facial swelling, nasal drainage and high blood pressure with these headaches. We went to many drs and ers only to be told it was due to her diabetes. In july she started with blurring vision, each week to the eye dr and by the end of August her vision was 20/400 in each eye. Sept 07, I finally was able to get a dr to order a lumbar puncture and her pressure was 29, she was put on diamox for a week. Day 5 of the diamox she had bilat strokes to the occipital lobes. Heather was admitted to the hospital and had a vp shunt put in her brain for pseudo tumor cebri. 48 hours after her blood pressure started going crazy and now has orthostatic hypotension. I don't want to go into all her hospital stays, the physicians have plenty of diagnosis's but no clear diagnosis of what is causing all these issues to happen. Since September 07, seizures, but eeg's are negative, blood loss 2 grams in 24 hours requiring numerous blood transfusion, in a month and half her heart ejections rate has gone to 10-15%, gastroparesis, myra in her urine that keeps coming back, pres syndrome, 6 strokes, altered mental status, renal insuffiency, hypertension, hypotensive, blood sugars that range from 20's - 700's, pulmonary edema resulting respiratory failure resulting in tracheotomy being on a vent and bypap, autonomic dysfunction, nephritic syndrome, cardiomyopathy, proteninuria.
I don't know if anyone can help, I am constantly searching for answers.
Laurette aka Heather's mom

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3 Replies:

  • im no doctor but here goes hypertension, hypotensive, autonomic dysfunction It sounds as if one of her issues is sympathetic nervous system (SNS) dysfunction, (I assume in her case.. hitting her head may of caused it) . I have SNS dysfunction which is causing that myself, (my BP varies HUGELY down to low levels (79/52 and up to very high levels eg 167/138) and i know doctors are not familiar with it. It isnt counted as hypertension thou as ones body sometimes gets it down..to be said to have true hypertension.. one needs BP to be consistantly up.When i FINALLY got diagnosed by a specialist with it.. my two GPs and other specialist, said "What on earth is that?" (I only got diagnosed with it as I was taking part in a scientific study on another condition I have on nervous system dysfunctions at our major hospital run by the head specialist. From my results, he knew my issue but was very surprised..as he never thought one of his study participants would have this issue, (with my condition) the SNS dysfunction usually just manifests as hypotension, not as a completely wacked out BP system.. it's just a more unusual way of manifesting). (im not sure how this can be treated as no one seems to know what to do in my case so currently ive been left untreated). If you research the sympathetic nervous system.. you will see that it is a VERY important controlly thing in our bodies. Our whole bodies (hormones, heartrate, breathing, everything) are controlled by the autonomic nervous system (ANS) which keeps the whole body in balance and function.. which consists of the SNS and the PNS (parasympathetic nervous system).It makes sense (well to me anyway) that everything is out of wack if the SNS and the ANS is dysfunctional, it will screw everything in body up.
    taniaaust1 2267 Replies Flag this Response
  • How are you tested for sds and what is the treatment. I will bring it to the drs attention tomorrow, I can not thank you enough for your input and helping in findind answersLaurette
    heathersmom 1 Replies Flag this Response
  • How are you tested for sds and what is the treatment. I will bring it to the drs attention tomorrow, I can not thank you enough for your input and helping in findind answersLaurette There isnt like one test for a sympathetic nervous system dysfunction... the diagnoses is based on having symptoms which show there is a dysfunction going on in this system.. eg like your daughter has. Im not really sure even what kind of doctor would specialise in this.. as the brainy specialist who diagnosed me was a semi retired endocrine specialist, who also specialised in other fields too. (umm maybe a very knowable neurologist would be able to give you more answers on these systems and how they are dysfunctioning).
    taniaaust1 2267 Replies Flag this Response
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