Whats do you all think?

[Fedup4doctors]

Starting in around the year 2001 or so, I was diagnosed with Hepititas C related arthritus and Chronic Pain Syndrom with muscular atrophy. Then shortly after, Cavernous Hemangioma of the liver which has been growing over the years.

Then in 2004 I had a bought of Thrombosis and neurological problems with limbs after that. Migranes and eye pain started. Dizzy spells. Then a year ago I stopped being able to eat. I have been loosing a lot of weight and I am 99 pounds.

I have been fallling down in the day and hanging onto furniture while the house spins getting in and outer body sensations, flashes of lightning and shadows and halos. At night I sometimes wake in a moment of convolsions unsualy trying to gasp for air and at first think earthquake. Last night the convulsion lasted a long time and I was partialy awake and was hallucnating, seeing and hearing things. My neck was contorted backwards and I thought it would snap. I shook violently unable to speak. I was very sleepy after but fought to stay awake all night.

I am having bladder problems, memory problems and can not remember how to cook or what i am doing half the time.

I smell burnt weird strange intense smells no one else can smell. I am cold all the time or too hot. Some days my limbs wont move when I need them to. Sometimes my joints are in so much pain I can not walk or lift up my arms. I have worm like feeling up my spin and in my limbs and uncontrolled movements.

I AM ON NO MEDICATION AND I DRINK NO ALCOHOL. I DO NOT USE DRUGS.

Doctor disbelievs me about the convolsions. He wont send me back to a neurologist, wont give me a brain scan. 3 yrs ago I had a EEG, but not the kind where they sleep deprive you. Three years ago I was not convulsing. Of course the scan was normal. but I frequently hallucinate if I have had insomnia. How accurate is an EEG?

I get up to 2 months of insomnia at a time.

My diagnoses? Mental illness of the personality disorder disociative disorder type. With possible Schizophrenia and or Bipolar Disorder on top. A doctor, not a psychiatrist gives me this diagnoses before I even sit down in his office to talk to him. I had never met him before. He treated me with absolute contempt. I went to him out of respect for my physician who asked me too.

My husband and I say............" what the heck kind of schooling did these doctors get? something physical  is obviously being missed......NOT MENTAL! It doesn't take a brain scientist to figure that out.

Now I am stuck in a small town with a label and they don't let patients move to other doctors or they are labelled difficult. I have had this doctor for 4 yrs. He does not believe you can have a concious sezier or convulsion. What planet is he from?

I am fed up, hurt and so very angry.

Help.

[Nyxie63]

You're welcome, dearie. :)

Call on me anytime.  And thanks for the complement.  I have moments. :-D

[Nyxie63]

I'm glad you found that article so useful.  It's my "grail".  It was the first thing I'd read in a long time that gave me the clue to a possible answer.  Really opened my eyes.

You're so welcome. :)

[DLA]

Thank you so very much, ma'am.  Knew you could help her.

HUGS!
Dac

[DLA]

Am so glad I sent Nyxie your way.  Sounded a lot like her symptoms so thought you 2 should talk.   She's a terrific person and very intelligent.  

Hope you find something out really soon.

[Fedup4doctors]

That last bit came out wrong,

I do not think having mental illness is demeaning, but my doctors and the friends I once had make me feel like it is.

[Fedup4doctors]

I am in absolute shock! I read your first article you mention above. That long essay. I can not believe I could read it, it is so long. But I read it with ease because.....I am not kidding at all nor exagerating when I say it made me tear up because I could not beleieve that I have 90% of all of those symptoms.

I get frustrated at night cause I get these strange things happening with my skin, joints, and limbs and spine. My husband can not hug me cause of the pain. I can not pour the milk, My eye has a constant tick and I get movements of mylimbs in public that i can not control. Every thing is worse during PMS and Vision problems, icthy bitting skin , the sensation of my blood feeling poisoned. Urinary problems, lose of my bowls and bladder and on and on and on....... that whole essay could have been written by me except fro 10 percent of it.

Even if I do not have LYME Disease, (and I very well may not). THIS IS IMPORTANT! People need to know this. I highly recomend this reading.

I thank u so much. If you even think of things like, Huntingtons Disease and such, their are many illnesses that can mimic mental.

The article talks about the dementia that I am getting in absolute detail. I get it that badly just like the article says. Yet the doctors don't beleieve me. My husband is angry cause he says " I live with you every day watching you waiste away and seeing you lost and not knowing what u are doing."

This could very well be physical even if not LYME.

Everyone with a Mental Illness should be thoroughly checked for everything under the sun before being slapped with a label that is ever changing and demeaning.

[Nyxie63]

Canada's medical system does tend to complicate things.  Still, there is hope for proper testing and treatment.  I'll send you a couple of links that should help.

Hang in there!  

[Fedup4doctors]

I have not had any brain scans of any type. In Canada, I don't know how to get one without a referal.

[Fedup4doctors]

Been checked for thyroid and it was fine about 6 months ago.

I forgot about the lime disease thing and as I told Nyxie63, I had a tick buried in my head and burned out once. Also live where lots of ticks and lyme disease.

Thanks for the advise! Worth a check. I will try to keep ya posted.
Thanks everyone so far.

[Nyxie63]

I agree with Dac and Venora about the thyroid.  Can you get outside the town to other drs?   A full endocrine workup would definitely be in order.

Another suggestion would be to find a GOOD psychiatrist.  Hear me out on this one.  A good psychiatrist will rule out physical causes for psychiatric illness in order to see what's left and deal with that.  They can order all the tests necessary for diagnosis as they're medical doctors.  This might be one way to bypass your idiot PCP.

Have you ever had an MRI with and without contrast?  Definitely sounds like something neuro going on.

Have you ever been tested for lyme disease?    Warning in advance as this is my pet project and I tend to see it everywhere these days.

This is kind of a loaded question, as the tests are iffy, at best.  A clinical diagnosis is required by a lyme-literate medical professional.  And it can cause convulsions, cognitive problems, psychiatric problems, arthritis, endocrine problems, eye problems like flashers and floaters, and can affect every system in your body.  Believe me, I've been run through the wringer with this.

I highly suggest you read the following essay "When to suspect lyme disease":  

http://www.cassia.org/essay.htm

It's very long, so take it in small bites.  If you think it applies to you, then please get tested.  And get a Western Blot done, not an Elisa test.  Even Johns Hopkins has published that Elisas are notorious for having a minimum of a 50% false negative rate.  That's half of all people with lyme being missed by a faulty test!!!!!

Also check this brochure out, "What psychiatrists should know about lyme disease"

http://www.ilads.org/PsychiatristBrochure.pdf

And while I'm posting links, might as well post a symptoms list:

http://www.lyme.org/otherdis/ld_symptoms.html - Read this one first!

http://www.lymeinfo.net/medical/LDSymptoms.pdf - Scroll down to the chart and go from there.

I'm not saying you have lyme.  However, it definitely sounds like something to investigate in your case.  And I agree with your husband - this doc is missing something physical.

Good luck and please keep us posted.  Also feel free to contact me if you'd like any further information. :)

[DLA]

Venora's right about the thyroid.

Can you not go outside of your little town to drs?  Sounds like you really need a new PCP.  Your's is not doing you any favors it seems.  Would start with a new dr and start working outwards from there.

Hang in there and don't care what they say to you about being trouble, you're not.  They are just idiots.

BTW, if any of them put anything in your chart about you being a pain or such a thing as that you can sue them b/c it's against the law.

[Venora Moonwind]

Please see an endocrinologist and get your thryoid tested. it could be the cause of all of this. Let me know what you find out.
Love Venora