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Old 07-15-2008, 11:41 AM   #1
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macawi3 HB User
Undiagnosed and I'm getting worse, do you recognize my symptoms?

I am a 23 yr old female and for the past 2 1/2 years I've had a variety of symptoms. I've gone through multiple tests but still no diagnosis. I feel that perhaps the wrong tests are being done and my doctor is missing something. I am posting in hopes that someone might recognize my symptoms and be able to point me in the right direction.


Symptoms:
-chest pain- its like a tightening feeling that lasts for a few hours a few times a week.
-Extreme fatigue- Normal everyday activities are very hard for me
-Muscle spasms/cramps- I pull muscles very easily, even a small turn of my body strains my muscles
-Numbness/tingling in extremeties- this is also accompanied with my feet turning purple and my hands get red.
-Swelling of wrists and hands
-Ear pain, tinnitus, fullness and drainage- I have also noticed that I never have any earwax in my ears.
-Runny nose- this happens sporatically, my nose will just leak clear fluid for a minute or so and then it dries up. This happens about 3-4 times a week.
-Upper G.I. pain- this is localized to my upper right side. After eating I get pain everywhere in my abdomen and this is followed by a migraine headache.
-Fainting- This happens about 2 times a day, sometimes more.
-Vision changes- I see a few spots which are present all the time, its like there is something dangling in my eye. My eyes swell a lot and overall i find it hard to focus my eyes on things.
-memory loss- I forget what day it is, where I put things, I even forgot where I lived a few times.
-skin problems- This is a new symptom, I've started getting ingrown hairs everywhere that are very itchy. I've extracted many and in one hair follicle there are 4-5, hard white hair- like things in there, after extraction, yellow goo comes out that has black things in it. It's pretty gross but its the only thing that relieves the itching. I also get red spots all over my body a couples times a month, it lasts for a day or so then clears up.
-Hair loss- I have no bald patches but my hair is thinning, clumps of hair fall out in the shower and after I brush my hair.
-I don't know exactly how to explain this next symptom, it just started happening about 2 weeks ago.. everday I get this feeling in my whole body like something is moving throughout my body and causing extreme fatigue, I can actually feel something moving inside of me starting from my head making its way down to my toes. As soon as this happens I need to lay down. It is very wierd but I've noticed that getting in the bath is the only thing that relieves it. I lay in the bathtub with my whole body submerged in the water, only my mouth and my nose out of water.. I'm in there for about an hour or more. As soon as I get out I feel better for a few hours and then the feeling returns.
- Sleep problems- With all these debilitating symptoms, it is very hard for me to sleep at night. I wake up covered in sweat every morning and I have very vivid, surreal dreams. I get about 6-7 hours of sleep everynight.
- Weight loss- I have lost a total of 20 pounds in the last 2 years. My weight has fluctuated throughout this time. I'll put on a few pounds in the times I'm feeling a little better and when I go through the more serioius bouts of my illness I tend to loose the gained weight plus more.


Here are a list of the tests and the results, also specialists I've seen:

Tilt table test- Positive for vasovagal syncope, I was givin instructions on how to lessen the syncope. However nothing helped.
Cardiologist- wore a heart monitor for 30 days, sinus tachacardyia and arrythmia were found. Still awaiting follow up appointment.
EEG- Normal
MRI of brain- I had this done in 2006..small lesions found in subcortical white matter. Nothing was done after this.
Blood tests- thyroid was normal, glucose tolerence test- normal; in other blood tests I had low potassium a few times, low blood sugar a few times and low liver enzymes. D-dimer test for blood clots came back positive however, nothing was ever done about this.
Endocrinologist- Cortisol test done, it came back normal.
Dermatology- I was givin antibiotics for skin problems, however they are still present.
G.I.- I've had a colonoscopy, a little bleeding was found in colon, a biopsy was taken and it came back normal. I was givin meds for IBS and that is all that was done.
Multiple sclerosis specialist- doctor wasn't suspicious of M.S. after routine tests, so he didn't even look at my MRI.
Nuerology- The doctor did the routine tests (standing with my eyes closed, hyperventilating, reflex tests) and had me do another EEG, all together I've had 4 EEg's done and all have come back normal. I saw 2 nuerologists and neither looked at my MRI or suggested that I have another one done. With both doctors I saw them both for a total of 5 minutes. Each doctor seemed uninterested in my symptoms.
ENT- did hearing test, came back normal. Doctor said nothing is wrong.

I have taken my own measures to trying to get healthy, such as a healthier diet, homeopathic remedies, etc. I feel like I take very good care of myself and I wish it were that easy to blame my problems on an unhealthy lifestyle. I'm trying to find a new primary care physician because it seems that she has givin up on trying to figure out what is wrong with me and she doesn't take me seriously.
I really don't know what to do anymore, I'm a pretty optimistic person but I am getting more and more frustrated everyday that I cant have a normal life. I hope that someone recognizes my symptoms and can help me out. Any insight or guidance would be greatly appreciated.

 
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Old 07-15-2008, 11:51 AM   #2
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Re: Undiagnosed and I'm getting worse, do you recognize my symptoms?

Have you had thyroid bloodwork done? You have lots of symptoms common to low thyroid, and MDs often don't order enough tests for it or know how to interpret the ones they do order.

If you have had any done, visit the Thyroid Disorders board. There are folks there who can help you interpret the results to see if the MDs are missing anything.

Edit to add... Oops, I see you had thyroid run. Still, run the results by the Thyroid board. I bet you didn't have enough of the right tests done.

Last edited by midwest1; 07-15-2008 at 11:53 AM.

 
Old 07-15-2008, 01:01 PM   #3
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babyluv45 HB User
Re: Undiagnosed and I'm getting worse, do you recognize my symptoms?

Have you ever had testing for any autoimmune diseases?

 
Old 07-15-2008, 03:02 PM   #4
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painaway HB User
Re: Undiagnosed and I'm getting worse, do you recognize my symptoms?

Girl, if I were you, I'd get your doctor to run a "vitamin deficiency anemia" test. It's just a simple blood test, but it is SO SO SO overlooked by doctors. Please read my thread to Willie on this board... [url]http://www.healthboards.com/boards/showthread.php?t=615254[/url]

It describes how vitamin deficiencies can mess you up horribly...especially if you're low on B6 or B12...even A and D can cause some strange things. It's such an easy test, and at least that can be ruled out. Please give it a try! I know of 2 people who had awful problems and their doctors had pretty much given up on them. In fact, there was a lady on "Diagnosis: Unknown" who was having fainting spells and fatigue, some other strange symptoms, and had gone from doctor to doctor. They had given up, when she saw one more specialist. This doc did a Vitamin Deficiency Anemia test, and they were astonished that one of her B vitamins (think it was B6, not sure) was drastically low! After a few shots, she was back to normal. Amazing. So, it's worth a shot to have the blood test. Do a little research on "vitamin deficiency anemia" and read about all the symptoms people have when various vitamins are terribly low. It's astounding.

I'll be praying for you! It will get better.

 
Old 07-17-2008, 11:38 AM   #5
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macawi3 HB User
Re: Undiagnosed and I'm getting worse, do you recognize my symptoms?

Quote:
Originally Posted by babyluv45 View Post
Have you ever had testing for any autoimmune diseases?
I went to an endicrinologist and they did a cortisol test, I know that tests my adrenal glands. That came back normal. That is the only test I know of that I had for any autoimmune diseases.

 
Old 07-17-2008, 11:43 AM   #6
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macawi3 HB User
Re: Undiagnosed and I'm getting worse, do you recognize my symptoms?

Quote:
Originally Posted by painaway View Post
Girl, if I were you, I'd get your doctor to run a "vitamin deficiency anemia" test. It's just a simple blood test, but it is SO SO SO overlooked by doctors. Please read my thread to Willie on this board... [url]http://www.healthboards.com/boards/showthread.php?t=615254[/url]

It describes how vitamin deficiencies can mess you up horribly...especially if you're low on B6 or B12...even A and D can cause some strange things. It's such an easy test, and at least that can be ruled out. Please give it a try! I know of 2 people who had awful problems and their doctors had pretty much given up on them. In fact, there was a lady on "Diagnosis: Unknown" who was having fainting spells and fatigue, some other strange symptoms, and had gone from doctor to doctor. They had given up, when she saw one more specialist. This doc did a Vitamin Deficiency Anemia test, and they were astonished that one of her B vitamins (think it was B6, not sure) was drastically low! After a few shots, she was back to normal. Amazing. So, it's worth a shot to have the blood test. Do a little research on "vitamin deficiency anemia" and read about all the symptoms people have when various vitamins are terribly low. It's astounding.

I'll be praying for you! It will get better.
Thanks for the info, I am going to bring this up to my doctor. I know I've been tested for anemia and that came back negative but I never had a test for a vitamin deficiency.

 
Old 07-29-2008, 10:59 AM   #7
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macawi3 HB User
Re: Undiagnosed and I'm getting worse, do you recognize my symptoms?

I have just started expierencing a new symptom. It began a week or so ago. Ive been getting severe hand cramps. My fingers feel very stiff, I feel like I need to keep my hand in a fist, I also get this stabbing pain in my palms. When I try to push my fingers back to a normal posistion it sends a shooting pain into my wrists and forearm.


 
Old 07-29-2008, 01:42 PM   #8
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Re: Undiagnosed and I'm getting worse, do you recognize my symptoms?

"small lesions found in subcortical white matter. Nothing was done after this."


Sounds like MS to me. Maybe you should see another -different- neurologist.

Last edited by AuntieLeela; 07-29-2008 at 01:42 PM.

 
Old 07-29-2008, 02:34 PM   #9
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bethsheba HB Userbethsheba HB Userbethsheba HB Userbethsheba HB Userbethsheba HB User
Re: Undiagnosed and I'm getting worse, do you recognize my symptoms?

macawi3,

Has anyone suggested you check out the lyme disease boards here? Given your symptoms and lack of diagnosis, Iwould encourage you to do some reading there....many symptoms of lyme "mimic" other disorders.

Bethsheba

 
Old 07-29-2008, 10:59 PM   #10
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macawi3 HB User
Re: Undiagnosed and I'm getting worse, do you recognize my symptoms?

Quote:
Originally Posted by AuntieLeela View Post
"small lesions found in subcortical white matter. Nothing was done after this."


Sounds like MS to me. Maybe you should see another -different- neurologist.
I've seen 2 neurologist and an MS specialist.. none of them thought anything was wrong with me. It's very frustrating.

 
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