Discussions By Condition: I cannot get a diagnosis.

Any one care to offer opinion?

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: SilkDragon
  • October 17, 2006
  • 00:08 PM

Approximately 2 years ago, I had a significant increase in both number and intensity of migraines (I have suffered migraines for ~20 years, but these were coming every day for over three months).

GP ordered MRI, she said it showed nothing wrong (although this is the same doctor who told me I had a deviated septum (an ENT showed me that I have a very straight septum), and told me that my CT scans indicated that I did not have a kidney stone – the stone I didn’t have that I passed 3 weeks later).

Since then I have had relapsing-remitting yet slowly progressively worse problems (see symptoms)

Things that have been ruled out (supposedly): Fibromyalgia, hyperthyroidism, diabetes, rheumatoid arthritis

Aphasia – either Broca’s or anomic

This started out so mild I did not recognize it as a problem, only realized length and extent of problem by reviewing journals
Difficultly retrieving words; leave out words; think one word yet say another; significant spelling impairment; writing/typing impairment, sometimes cannot understand what someone said (either words sound garbled or I understand the words, but cannot understand the concept being conveyed), problems with pronouncing some words.
Logic and mathematical abilities have not suffered Rhomberg test

With my eyes closed, I always fall to the left
I also fall to the left when trying tandem gait with eyes closed. Coordination impairment

Trip, knock things over, cannot put caps back on bottles, end up with bruises/minor injuries that I don’t know where they come from Cognitive Dysfuntion

Memory Problems
At first I just thought it was stress related
Now – go into another room and cannot remember why, constantly losing things, lose track of thought…
Either cannot concentrate (scatter brain) or Hyper concentrate (focus on something to the exclusion of even physical comfort) Hyperthermia/fever

Go from 97.4 to 101 temp as day progresses
Sometimes just overheat significantly without accompanying fever
Skin on face/neck/chest feels like I have a sunburn, but I don’t
Hot, tight, irritated, but no redness or visual indication of problem. Hypersomnia/Insomnia

Can have months when I can barely stay awake
Have often slept for > 3 days straight
Then have times when I cannot sleep (even with sleep aid). Fatigue/Exhaustion/cannot get breath

Can have weeks, or months at a time when I am severely fatigued
Any exertion leaves me exhausted for >24 hours
Cannot seem to get enough oxygen
No problems with asthma, congestion, etc
Sometime occurs with Hypersomnia
Often get the fatigue without the hypersomniaI have an appointment with a Neurologist (a different one) next Monday. Should be interesting appointment, although I have learned not to expect much.

Would love to hear what others think might be the problem.


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9 Replies:

  • Have you had your thyroid checked? Hyer and hypo can do lots of weird things... some things you say have that feeling about them. Research Graves disease, Hyper and Hypo thyroid and Hashi's disease. (The more "vague" symptoms) Its worth a shot.
    Anonymous 42789 Replies Flag this Response
  • thyroid cancer.. its pretty obvious.
    Anonymous 42789 Replies Flag this Response
  • What meds are you currently taking? Are you on birth control?
    acuann 3080 Replies Flag this Response
  • Thyroid and /or Lyme Disease . Get the western blot for lyme its more accurate then the others. A rheummy is better than a neuro for this. Good luck.
    Anonymous 42789 Replies Flag this Response
  • Sounds like you might have more than one thing going on. That always throws the docs. Sigh. You certainly do have a major set of nasty symptoms there. I wish something obvious jumped out at me, but it doesn't. Questions do, though.What else was going on in your life from when this started 2 years ago, and back 6 months from then? Check your journals, don't rely on memory for this. Any fevers? Any infections? Any accidents (car accident, taking a fall, twisted ankle, bumping your head, anything)? Major stressors (marriage, divorce, change in working status, death of someone close to you)?I agree that you want to get checked for Lyme disease, but don't stop there.The MRI ordered by the GT was of the brain? Can't quite tell from your post. You say thyroid has been ruled out. Was that by a blood test, or a scan? If only by blood test, a scan might be useful.I am very happy you have an appointment with a neurologist, that would be the next thing on *my* list. Definitely take in a print-out of the description you've put up here, it is concise and definite. Will be helpful (or should be). Ask if there is any chance that you could have had a stroke or post-concussive syndrome, if the neuro doesn't bring these things up.Have you had anyone check for auto-immune disorders? Lupus comes to mind, but only because that is one I am familiar with. You don't actually strike me as a Lupus person, but maybe there is another auto-immune problem that could be doing this?Do post again after your neuro appointment (besides looking into the questions I asked above). I'd be interested to read if that doc has anything useful to add.Best,Shula
    Anonymous 42789 Replies Flag this Response
  • I found myself in a similar situation (I'm female by the way and this occurred when I was 39) and the time-frame you've noted was slightly shorter, approximately a year.I experienced a good deal of what you've described, and testing showed nothing. I even went so far as to participate in an ageing study; I feared early changes, possibly some form of dementia or very early onset of a "pre-Alzheimer's" condition. But as you've noted, my logical and mathematical skills weren't really affected as were my verbal/memory/cognitive or coordination.I honestly thought I was going crazy - walking into a room and not knowing what I'd gone for; parking my car at work in the morning and being in a panic at the day's end when I couldn't remember where I'd parked it, and worst of all......never knew where I put anything; I think to this day I have 6 or more sets of keys, just because I could never find them. My mantra during this time period was "no...this can't be happening again..."I'd sleep for what felt like an eternity and was never rested. Exhausted, confused...headaches (and I never got headaches), had to have a bite block made due to facial pain (was told it was TMJ and that it was due to stress). The idea of just going to sleep and never having to wake up again began to pervade my thoughts, but that wasn't an option as I had a young son. Completely at a loss, emotionally like an egg shell...I quit my administrative job and took a job as a housekeeper in a nursing home, in hopes this would lessen "the stress in my life" and I'd get better. And by sheer fluke, I was going to attend a work-sponsored seminar on stress and the morning of, my furnace went on the fritz, so I didn't make it to the seminar - MY SAVING GRACE!As it turned out - long story, short- the heat exchanger in my furnace was cracked and over the course of a year and a bit, the changing seasons - the need for heat, and the shutting the furnace down during the warmer months, had caused the metal to expand and contract and further widen the small crack(s) insided the exchanger. God it all made sense now....I couldn't believe it, but it was true. I had been suffering the effects of long-term carbon monoxide poisoning. And because the symptoms were so varied and vague, no one could put their finger on anything definitive. Once I knew and advised my physician, specific bloodwork for carboxyhemaglobin was run and indeed confirmed it. The furnace was replaced and within about 48 hours I noticed a marked improvement (I'm sure I was acting much like Scrooge...very giddy the morning after having spent the night with all the spirits...running around telling my son to ask me anything, phone numbers...what I'd gone into the kitchen for and ... to tell him where my keys were! And here the physicians just wanted to give my Valium and send me on my way.....thank god I persevered.Anyhow, just thought this might be an avenue to explore - could be totally unrelated, but never hurts to check out some of the less obvious scenarios.ohttp://www.silentshadow.org/long-term-effects-of-carbon-monoxide-poisoning.htmlWill be interested to hear what you learn from your visit with the neurologist.AJ
    Anonymous 42789 Replies Flag this Response
  • AJ,That is an EXTREMELY interesting story!! At risk of hijacking the thread...did you get to a complete recovery, and able to get back to your old kind of work, or do you have residual effects from such a long-term exposure? Wow. Thank you for sharing that story.Oh...and could a carbon monoxide monitor in your home have caught this?Shula
    Anonymous 42789 Replies Flag this Response
  • Please do not listen to anything Shula or Acuann tell you. My sister just passed away because Shula and Acuann told her that her doctor was wrong and she did not have a serious condition. Acuann even told her to get acupuncture to get healed. These people are going to be investigated for practicing medicine without a license. Shula and Acuann are specifically wanted in connection with my sisters homocide. Thats right homocide. If she would have listened to her doctor instead of these internet quacks she would still be here today. Rest assured I will do everything in my power to put these two behind bars and shut this website down for good.
    Anonymous 42789 Replies Flag this Response
  • You're breaking my heart! What would your sister have said about your behaviour? You don't know how many of my friends and family have passed away under registered specialists. Mostly due to stupidity and negligence. Nor do you know how many of my friends and family (and pets) have at the last moment survived due to "quacks", in spite of the damage already done by doctors. But sooner or later friend, we all have to die.
    Anonymous 42789 Replies Flag this Response
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