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Old 05-24-2011, 09:52 PM   #1
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Question Please help! Do you recognize these symptoms?

Please, can anyone help us? I’m looking for help for my sister … she’s so, so sick, but we just can’t seem to find someone who knows what’s wrong. She’s so tired of going to doctors, and too exhausted to keep looking hit and miss, one test after another coming up inconclusive.

She's normally a very energetic person, fun and full of life. It's so unlike her to be fatigued and apathetic. She’s going downhill steadily … I’m so scared that we’re running out of time. Do you recognize this combination of symptoms? Can you help us?

Here are her current symptoms:

General malaise, feels sick/lousy
Fainting episodes
Dizziness on standing
Sudden episodes (often after eating) of extreme exhaustion … unable to stay awake (blood pressure drop?)
Dark rings under eyes
Migraines (long-term)
Severe intolerance to cold
Cold hands/feet
Weight loss
Arm muscle pain
Muscle weakness
Legs feel “heavy” when walking
Insomnia
Depression
Easily fatigued
Hair loss
Blurred vision
Constipation (long-term)
Urinary retention
Cold sweats
Low blood pressure
Episodes of severe stomach pain after eating (comes and goes)
Light sensitivity (long-term)
Smell sensitivity (long-term)
Recent sore throat, precipitating worsened symptoms
Severe back pain unresponsive to treatment/meds (result of an accident and failed back surgery)

Her symptoms have been gradually worsening over the past year. If you recognize these symptoms or have suggestions, please respond. We desperately need to know what direction to look for help. Thank you so much!

 
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Old 05-24-2011, 10:29 PM   #2
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Re: Please help! Do you recognize these symptoms?

What has she been tested for so far?

 
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Old 05-25-2011, 03:45 AM   #3
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Re: Please help! Do you recognize these symptoms?

3hr GTT - "normal" (but she crashed immediately after drinking the sugar solution, felt awful, slept thru much of it)
Standard blood work - everything within acceptable limits
Negative sleep study for narcolepsy
Most recent TSH – 0.61

Not many other specific tests, because we haven't found a doctor who really seems to "get it" how sick she is. She can look ok in his office if he happens to see her on a good day. So they are just taking their time. I think she's going to end up in the ER or admitted to the hospital pretty soon. I'm so afraid that something worse will happen before we can get help. We just have very little idea what tests to insist on or which specialty to seek help from. I've done tons of research online, but so far I haven't found something that describes her condition.

 
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Old 05-28-2011, 05:51 AM   #4
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Re: Please help! Do you recognize these symptoms?

Has she had her adrenal glands tested? My mother in law was very sick, near death actually, before they finally diagnosed her in the hospital with Addisonians disease.

It's a disease that not many doctors or nurses see every day in their offices, so the symptoms can go on for a while and the diagnosis get missed. It's worth a try anyway to see if she has adrenal insufficiency.
I wish you all the best. don't give up trying.
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If your mind is not clouded with unnecessary things, NO season is too much for you"

 
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Old 06-01-2011, 03:43 PM   #5
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Re: Please help! Do you recognize these symptoms?

has she had her thyroid tested..she sounds like she is hypothyroid which can be severe like the symtoms you describe..autoimmune disease (hashies)...hope everything works out ok for her....

 
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Old 06-01-2011, 06:02 PM   #6
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Re: Please help! Do you recognize these symptoms?

with that many symptoms, it is more likely that several different things are going on..

Start with making a timeline. But definetly start keeping a very discriptive and srticulate journal

 
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Old 06-01-2011, 06:04 PM   #7
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Re: Please help! Do you recognize these symptoms?

Sorry for another post.. Figure out what goes with the back injury..

She seems to have some very similar symptoms of MS.

 
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Old 06-07-2011, 08:54 AM   #8
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Re: Please help! Do you recognize these symptoms?

QUOTE=SeekingHope;4762465]Please, can anyone help us? I’m looking for help for my sister … she’s so, so sick, but we just can’t seem to find someone who knows what’s wrong. She’s so tired of going to doctors, and too exhausted to keep looking hit and miss, one test after another coming up inconclusive.

She's normally a very energetic person, fun and full of life. It's so unlike her to be fatigued and apathetic. She’s going downhill steadily … I’m so scared that we’re running out of time. Do you recognize this combination of symptoms? Can you help us?

Here are her current symptoms:

General malaise, feels sick/lousy
Fainting episodes
Dizziness on standing
Sudden episodes (often after eating) of extreme exhaustion … unable to stay awake (blood pressure drop?)
Dark rings under eyes
Migraines (long-term)
Severe intolerance to cold
Cold hands/feet
Weight loss
Arm muscle pain
Muscle weakness
Legs feel “heavy” when walking
Insomnia
Depression
Easily fatigued
Hair loss
Blurred vision
Constipation (long-term)
Urinary retention
Cold sweats
Low blood pressure
Episodes of severe stomach pain after eating (comes and goes)
Light sensitivity (long-term)
Smell sensitivity (long-term)
Recent sore throat, precipitating worsened symptoms
Severe back pain unresponsive to treatment/meds (result of an accident and failed back surgery)

Her symptoms have been gradually worsening over the past year. If you recognize these symptoms or have suggestions, please respond. We desperately need to know what direction to look for help. Thank you so much![/QUOTE sounds sooo much like what happened to me except that I also had the symptom of mental unclarity....but that came at the later stages. I was diagnosed with Graves disease and was in a thyroid storm before anyone figured it out. Regular thyroid tests were run many times and always came back normal. I INSISTED through the fog that they test my endocrine system-in depth. Viola' sure, my free T4 was fine but free T3, TSI(autoimmune), and "thyroid Peroxide" were all through the roof. I lost 1/2 my body weight, in just months. I hope this may help her...don't stop pushing. BTW...what do you call the guy who graduated last in his class at medical school? Doctor. Whether or not this has anything to do with her but I also have had back surgery (3)...one was botched and left my left leg numb & dragging.

 
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Old 06-08-2011, 07:43 AM   #9
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Re: Please help! Do you recognize these symptoms?

Have her go to a GI doctor or allergist to see if she has the autoimmune disease celiac or food allergies! There are a lot of related diseases and problems that could be causing these symptoms. Me and my daughter have terrible allergies and celiac disease and she gets stomach aches all the time as well as me...we were just diagnosed so I'm gonna have to change our diet

 
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Old 06-23-2011, 11:13 AM   #10
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Re: Please help! Do you recognize these symptoms?

It sounds like it may well be a few different things but many of the symptoms could be MS and ME and FMS aswell as glandular.
Drs told me one thing and another and said it was all fine when I had a 24 hour urine test and the major long blood tests. I found out a little while ago (8 years on) that they suspected Cushings disease/syndrome and my cortisol levels were hgh enough but because it was bound cortisol and not free they said everything was fine.
What they say and what it means are very different things.
I was told my 'episodes' were low blood pressure/sugar, stress, mental illness and fake before a year ago when during an MRI my brain lit up like a Christmas tree and declared I have epilepsy.
Drs interpret things, they aren't gods. I agree that you have to go to as many as you need to to find one that is dedicated to finding what's wrong and open to any diagnosis however vague it may be. Some drs just shouldn't be in the job.
I really hope you find out soon it sounds like your sister is in a lot of pain and that must make you feel awful. Hugs from the Brits x

 
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Old 06-23-2011, 05:44 PM   #11
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Re: Please help! Do you recognize these symptoms?

Has she been tested for a Gluten allergy? I agree with Joyful12 above, Gluten/celiac disease can make you very very sick, def go see a GI. Good luck and keep us posted! Bella<3

 
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Old 07-27-2011, 12:13 AM   #12
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Re: Please help! Do you recognize these symptoms?

Sounds like a possible thyroid disorder. Have you been to a rheumatologist, possibly autoimmune??

 
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Old 07-27-2011, 07:20 AM   #13
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Re: Please help! Do you recognize these symptoms?

Thank you for all your input. We will be seeing both a GI and an endocrinologist within the next couple weeks. Really hoping that one of them will have some idea what's going on. It's so frustrating and discouraging to see specialist after specialist who acts like they have no clue what's wrong and have little interest in trying to find out.

 
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Old 07-27-2011, 09:57 AM   #14
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Re: Please help! Do you recognize these symptoms?

Also try gluten allergy

 
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Old 07-28-2011, 02:12 PM   #15
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Re: Please help! Do you recognize these symptoms?

Alot of these symptoms sound similar to Lupus symptoms. Lupus has so may different symptoms per person but, many similarities among the people that do get diagnosed. Unfortunately, it takes a VERY long time to get diagnosed with Lupus. She has alot of the symptoms that I have but, I've had no luck getting any help either. I've been to just about every kind of doctor and to no avail. I still feel like hell and am going down hill just as fast. My neurologist recommended I go into Tertiary care in Manhattan and have multiple doctors work on me at once in order to come to some sort of diagnosis. Maybe you should have her get a referral similar to that as well.

 
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