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Author Topic: Help me trust doctor!!!!! This is irrational  (Read 201 times)

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Offline Pyr

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Help me trust doctor!!!!! This is irrational
« on: January 31, 2014, 02:27:24 PM »
HI.  I posted a few days ago.  I am in the middle of a GIANT health anxiety crisis that has spanned 6 months and six terminal or very serious diseases that I thought I had.   MY symptoms are real (well I guess some could be anxiety explained, but the latest has me on an ALS fear -Im twitching all over with some cramping).

I went to neuro (who has been following me the whole 6 months) and he says no ALS  and wouldn't order an EMG  just for "my peace of mind."  My rational husband says "see how confident this guy is that you don't have it that he isn't even ordering the test."  For most people that would be it.  But no, I don't believe it!  And I should b/c he has an excellent rep and has spent A LOT of time trying to figure out my symptoms for the past year, including 3 hours right before Christmas.

So my dr says, get a second opinion from my colleague who spent 2 years heading up the ALS clinic somewhere (I forgot) and is an expert in motor neuron disease.  I go to him.  He says, he didn't suspect it for two reasons a) (people with ALS don't just start twitching all over their entire body one day) and b) one of my complaints was burning pain and ALS doesn't present with pain).   However he is going to to do the EMG just to put the issue to rest for me (in two weeks).

I should have left his office doing cartwheels. I reclaimed my life! No terrible fatal disease!  I have no reason not to trust him and he too was very attentive and knowledgeable but I am so hung up!  HELP this is irrationale, right?  I made an appointment to start seeing a cognitive behavioral therapist next week.  I decided if I don't have anything wrong with me I have to set my mind straight and even if I DO have something wrong with me I thing I will crumble and not remain positive.  Ironically, I had to have open heart surgery done a few years back and wasn't even a smidge worried, b/C I knew exactly what the problem was how they could fix it.  Its these unknown diagnosed things that PLAGUE ME!

Help, still attached to ALS and I don't want ruin the next two weeks until the test.  I have to take both of their words of reassurance, right?  I just want these terrible troublesome symptoms to go away!!!!!!!!!!! :sick0002:
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Offline greend

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Re: Help me trust doctor!!!!! This is irrational
« Reply #1 on: January 31, 2014, 03:08:58 PM »
I really feel for you.  I read your post and had to reply.  Yes, trust your doctors.  You don't have ALS.

I've had neurological symptoms on and off for 9 years.  This last bout has lasted 3 years and drives me crazy.  I've been to 2 neurologists and had many tests including MRI's, nerve tests and the test you will be having, the EMG.  There were also many many more tests.  Everything came back normal.  I haven't really had a diagnosis, but anxiety and lower back problems have been suggested.  It all began 9 years ago after a bad flu and injuring my back, so who knows. 

Dealing with your anxiety is really important.  I am reading a book right now by Dr. Sarno, called the Mindbody Prescription.  It discusses the mind/ body relationship and how pain can be psychological.  I would suggest reading it; it gives hope.

Let us know how everything goes and I hope you feel well soon.  By the way, what are your symptoms?
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Offline ColdHands

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Re: Help me trust doctor!!!!! This is irrational
« Reply #2 on: January 31, 2014, 03:30:01 PM »
I know there are doctors that can be wrong, but you are dealing with two specialists in this area.  Neurologists and folks that specialize in ALS aren't garden variety doctors.  They have training far and above your average GP even other specialists.

Trust your doctor.  I am a huge believer in being your own advocate and pushing for things, but there is a point to just stop, step back and reflect.  Please read my post I put up about someone with HA, actually getting a real disease.

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"There is just one more thing that bothers me."  Columbo

Offline Pyr

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Re: Help me trust doctor!!!!! This is irrational
« Reply #3 on: January 31, 2014, 07:46:20 PM »
Thank you both for your replies.

In response to symptoms, I started getting an adrenaline feeling in my chest at night that would whoosh up to my head and give me pressure headaches when I laid down.  Right - I should have seen it coming - adrenaline is classic anxiety.  Anyway, I was so afraid of them that I would sleep sitting up and even then would develop these back of the head headches that were debilitating with ear and jaw pain.  They would come in waves like attacks. Drs werent sure if they were seizures or migraines.  Sleep became a terror time for me.  I would stay up all night researching.  That spiralled into worsening sleep deprivation issues.  Then after the attacks I developed neck and trap spasms.   Now I have burning pain throughout my upper region still preventing me from sleeping and functioning.  Burning head too.   Tingles here and there.   Definite weird functioning on right side of body.  Weird throat issues too.  ANd now cramping and twitching which keeps me up.   One thing after another  And six months of testing, 3 brain MRIs, lumbar punctures, etc.   The only thing I know for sure is that I do have a severly screwed up neck (lots of degeneration and c6 c7 issues) which could be causing some of the myofascial pain.  But the twitching really set me off on ALS...

Thank you C, I read your post and feel terrible for your situation.  I don't know your history but it seems that you are dealing with it rationally, which is how I handled my open heart surgery.  Just tell me what Im facing and I will face it.  I think thats the irony of HA, at least for me.  Im pretty fearless and straightforward about health issues, its the unknown diagnosis that drives me to incessant googling.  In my case now everyone keeps reassuring me all the "really bad stuff" has been eliminated, but I feel so terrible that I can't believe it   I just can't imagine that all that above is due to stress.  I even bought myself a 1,000 full body CAT scan for Christmas.  My HA is out of control.   I hope your health issues work out for you.  I will keep checking in on you.
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Offline Hypo84

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Re: Help me trust doctor!!!!! This is irrational
« Reply #4 on: January 31, 2014, 08:14:50 PM »
You don't have ALS, that is what I know 100%. What is also a fact is that you don't know what is ALS because if you did you wouldn't be scared because you don't have symptoms of it. Finally, stop googling. Google put you into panic mode and if you don't stop researching in the near future you will post here with another incurable disease.
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