Discussions By Condition: I cannot get a diagnosis.

headache over 3 yrs; seizures; stroke; dizziness; vertigo; and more

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: rednightbird
  • April 7, 2008
  • 10:58 PM

I NEED HELP

I have been getting the run around from my mds for over a year now I have a 1 and1/2 cm lesion of some sort on my right frontal lobe and now apparantly a developmental problem with my thalamus my neurologists are refusing to see me I have also recently had issues re seizures and stroke the one neurologist is saying this is a transient migraine the other said maybe lupus or ms but even though now after the stroke I can not physically do much of anything no one wants to tell me whats going on.


Someone out there please help me I'm 40 years old and all I want is to try and get on with my life whatever I have left of it.

Thank you in advance

Rednightbird

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7 Replies:

  • thanks for the info you gave me pretty sure it's not lyme however it very well could be i used to spend alot of time in the bush around our area of northern ontario not recently though I am just very frustrated to be getting the run around from my neurologists with regards to this thank god my bf is a nurse and is very angry right now about the situation she'll be making some calls on my behalf tomorrow but any info anyone here could give me would be extremely appreciated and will look further into the electric sensitivity thing makes more sense to me than anything else they are talking about I live less than a km from a cell phone tower and have always been able to hear electronic hum that others can't THANK YOU again I don't think I'm quite as crazy anymore Rednightbird:confused:
    rednightbird 2 Replies Flag this Response
  • Hashimoto's Encephalopathy can cause migraines, seizures, stroke-like episodes, and dizziness. It can cause lesions on MRI and is often mistaken for MS, Lupus, etc...And when all tests come back normal, some doctors might start to call it psychosomatic since they can't figure it out- most neurologists have never heard of it.That's what happened to me, anyhow, until one doctor ordered the tests that would finally diagnose me and explain all my symptoms.HE is diagnosed by checking thyroid antibodies- to thyroperoxidase and thyroglobulin. It's a rare complication of autoimmune thyroiditis, but most patients with HE have normal thyroid hormone levels and may have no evidence of thyroiditis yet. I ended up having lots of tiny nodules in my gland when an ultrasound was done, but I never had a goiter and my TSH was always normal.I don't know if any of this applies to you, but if they have checked absolutely everything else and are starting to call it mental, it might be worthwhile looking into this possibility.
    Anonymous 42789 Replies Flag this Response
  • Hello Elke,I wanted to know when you got diagnosed with HE how high were your antibodies?Thank you.
    Finally 3 Replies Flag this Response
  • I saw my neurologist this morning and he is as confused as I am apparantly did not suffer a stroke although definitely have the symptoms he has given me a prescription for another anti convulsant to try and bring some of the feeling back to my left side and is referring me to another neurologist who specialty is ms will not give me a difinitive diagnosis as he can't until more symptoms appear doesn't want to do the spinal tap as that will not difinitively diagnose ms and can confuse with other ai disorders as well should I ask for the spinal tap anyway??? what is my next step besides having an aneurysm because of the frustration you guys have all been so helpful thank you thank you Rednightbird
    rednightbird 2 Replies Flag this Response
  • I saw my neurologist this morning and he is as confused as I am apparantly did not suffer a stroke although definitely have the symptoms he has given me a prescription for another anti convulsant to try and bring some of the feeling back to my left side and is referring me to another neurologist who specialty is ms will not give me a difinitive diagnosis as he can't until more symptoms appear doesn't want to do the spinal tap as that will not difinitively diagnose ms and can confuse with other ai disorders as well should I ask for the spinal tap anyway??? what is my next step besides having an aneurysm because of the frustration you guys have all been so helpful thank you thank you Rednightbird your doctor is a moron, and an idiot. you have HE as another poster said. it fits 100%
    Eyes, Ears 24 Replies Flag this Response
  • What meds are you taking and are you on bc pills? Have you tried acupuncture? It is fantastic for post stroke symptoms...miraculous, even. I think it would help get you back in balance and improve a lot of your symptoms. I agree that HE is a possibility. An good endocrinologist would perhaps be more helpful than a neuro. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • In response to the above question, I think my thyroglobulin antibody was twice the normal limit, and my thyroperoxidase antibody was 8 times the normal limit...I'm not saying for sure (or even at all) that the original poster has HE. I just wanted to throw it out there as a possibility worth looking into. There's other things it could be. I was worked up for a bunch of things, that hopefully they are looking at: lupus, antiphospholipid syndrome, celiac disease, heavy metal toxicity, devic's diease, ataxias, plus a whole lot more.I hope you get some kind of answer soon, whatever it is. I'm so sorry you are having your symptoms and no answers yet.
    Anonymous 42789 Replies Flag this Response
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