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Old 09-19-2007, 07:33 PM   #1
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Join Date: Dec 2006
Location: AZ
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HELP PLEASE! Two years, no answers.

I don't even know where to begin. I posted months back about various symptoms I am experiencing. I have yet to have a diagnosis and just feel at a complete loss. I am desperate for answers.

Let me begin with trying to explain this as best as I can. Let me start with the most HORRIBLE symptom, the one that has changed my life. First and foremost my breathing feels constricted when I am laying down. (I have slept upright or semi upright for two years). When I am flat on my back I feel so heavy. I have trouble breathing and my limbs start to go limp. My whole body feels like lead weight to lift. I start to get a splitting pressure headache. Once I sit up I feel a little better. Leaning back or laying back causes the same thing. The time I feel most comfortable is on a solid chair. BUT I still always feel like my breathing is constricted, ALL THE TIME. Sometimes I need to just sit up really straight to get any sense of relief. I can not walk for more than a few minutes without feeling like I am pulling lead weights along with me. Here are more symptoms.

When I wake my body feels bruised, especially my feet and hands.
I have TMJ symptoms
I am dizzy all of the time (kind of out of it feeling)
my scalp is so tender, sometimes I can't even brush my hair
For three years I have had bladder pressure, have been on numerous antibiotics none of them work. My bladder pressue is worse when I lay down
Restless legs syndrome
My upper chest is painful to the touch
My breastbone will go numb at times, feel like something is wrapped around my chest
various parts of my body go numb depending on my position
Horrible lower back pain
Pelvis tenderness


More infromation: In 2006 I was pregnant. I had all these symptoms before pregnancy, and during my pregnancy I could bary hold myself up that I was using a walker at 31 years old. Doctor's thought all of these symptoms were pregnancy related, but they have yet to subside. My child is now a year old and I have barely been able to carry him since his was born because my chest is so sore to hold anything(anyone) against it.

Here are some of the tests I have had in the last two years.
spine/neck MRI - came out fine
Head CT- came out fine
Abdomanal CT- came out fine
Abdominal ultrasound - LIVER LOOKED ENLARGED

Various bloodwork
The only thing that had been mentioned was high liver enzymes

Meds I have tried (I have NEVER gotten any relief)
Because they have thought it was in my head I have been prescrived various panic disorder meds and depression.
Xanax (no help, just made me feel loopy high)
Zoloff (caused sever migrains)
Welbutrin (turned me into a robot with no desire to do anything)
Prozac (Worst of all of them, made me cry all the time and I literraly sat on the couch and did nothing but feel depressed)

After I tried these and got off of them I was back to my positive self (yes believe it or not I am STILL positive) although I have basically turned into a shell of myself. I feel as if my body had completly betrayed me.

I am 32 years old and can barely move around, walk like a 3rd trimester pregnant lady, haven't been able to lay down in two years and need some help.

I know I have forgotten many things...but hopefully SOMEONE has experienced something like this.

Oh one more thing, here is the doctors I have been to.
General practioner
Neurologist
Surgeon

Thank you to everyone.

 
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Old 09-20-2007, 04:51 AM   #2
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Join Date: Jul 2007
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Re: HELP PLEASE! Two years, no answers.

Get a ferritin level done.

Ferritin = iron stores and is NOT the same as hemeglobin. Most doctors never test ferritin. No other test low iron is the same as ferritin, unless it says ferritin, it is not ferritin.

You can easily have a low ferritin level even with a normal hemeglobin (and have lots of symptoms of low ferritin, including many that you listed).

Also, get a copy of your lab report (to see what your number is). Do not ever settle for being told your lab reports are "nornal" always get COPIES (by law they have to give you copies of any medical records if you request them).

Optimal ferritin is between 70 & 90 (although the lab report will say as low as 10 is "normal" it's NOT).

If your ferritin is low you will need to take iron to get it up (lots more iron than the RDA). A word of caution: too much iron is dangerous if you don't need it, so don't think you can take lot of iron & see if that helps, you must have your ferritin level tested & know that it is low before taking more than the 100 % of the RDA.

Questions: do you have heavy periods, eat very little red meat? Either one of those could lead to low ferritin.

Also, find out what your TSH is (that is a screening test they do for thyroid). Optimal for that is low, around 1.0 (though many doctors will call a much higher number "normal" it is NOT optimal and could account for some of your symptoms too. Optimal TSH is around 1.0

Did you know that they have to give you copies of all your medical records if you request them (in the USA)? Call your doctors office and request COPIES of all your medical records (especially copies of lab reports and x-ray reports, etc.)

Let me know what your FERRITIN LEVEL & TSH are. Remember there can be a huge difference between "normal range" and OPTIMAL! ( and your doctor may not think so).
__________________
25 years feeling worse every year on Synthroid & 13 months feel good on Armour Thyroid.

 
Old 09-20-2007, 11:18 AM   #3
Newbie
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Join Date: Dec 2006
Location: AZ
Posts: 5
LC 31 HB User
Re: HELP PLEASE! Two years, no answers.

Thank you so much for your reply,
Yes, I usually have very heavy periods, but this month it has just been very, very light. Almost as if I did not have a period at all. I am not on the pill and I am not pregnant. So I don't know what to make of that.
I have a few records with me, I am working on obtaining all of them. I will get them all in order in come back with lab results along with whatever else I received.
Again, thank you for taking time to respond to me.

 
Old 09-20-2007, 05:26 PM   #4
Senior Veteran
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Join Date: Sep 2006
Location: US
Posts: 863
butrfligirl28 HB Userbutrfligirl28 HB User
Re: HELP PLEASE! Two years, no answers.

I would highly recommend you see a rheumatologist. They are the specialists that diagnose when other doctors cannot. I have fibromyalgia, which has some of the symptoms you exhibit. I went for years without a diagnosis and finally saw a rheumy who figured it out right away. Also, I have had difficulty with anti-depressants like you. However, I tried Cymbalta and it has helped with my body pain, and anxiety and depression that happens when you have a chronic illness. I am not clinically depressed, but anyone who suffers like this from day to day, needs some help.

I hope some of this helps you and you get a diagnosis soon. You are not alone in this. I know sometimes it can feel that way. You know something is wrong. Keep searching and you will find a doctor that can figure out what is wrong. Good Luck!

Amanda

 
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