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    Old 12-27-2006, 11:51 AM   #1
    ventcrew
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    Unhappy Please help me find out what is wrong with me!!!!

    Hello everyone,

    I apologize for how long this is. I don't even know what my problem is Thought maybe you all could help me decide what to do next or what this sounds like

    Symptoms off and on since 2001
    Sweats, chills, flushing,
    Fatigue, tiredness, poor stamina
    Swollen glands in neck & collar bone
    Loss of Libido
    Chest pain and rib soreness
    Heart Palpitations, pulse skips
    Joint Pain (left knee sometimes can hardly walk but goes away on its own)
    Horrible stiffness and swelling of the back
    Muscle pain
    Headache (mostly in the occipital area) Head Pressure (constant but only sometimes horrible)
    Neck creaks, cracks, stiffness and horrible pain
    Tingling, numbness, burning, stabbing pain only ocassionally during the day but wakes me up (expecialy burning, numbness and tingling in head, face, ears & neck) akmost every night, along with rapid heartbeat and High BP
    Ocassional ear fullness and constant pulsating tinnitus (worse at night)
    Vertigo??? (when I am in bed I sometimes feel I am still moving)

    Numb hands while sleeping
    Confusion, difficulty in thinking, lack of concentration,forgetfulness, poor short term memory, poor attention, problem absorbing new information.
    Difficulty with speech, word block
    Mood swing, irritability
    Disturbed sleep, too little, fractionated and early awakening.
    Do not drink but feel like I have a hang over when I wake up.
    Rash only on right side of body that responds to nothing just time.Not Bulls Eye.

    Tests: MRI Brain w/contrast - Normal (ruled out MS or Brain Tumor and other stuff)
    MRI Cervical Spine w/contrast - Arthritis
    MRI Thoracic Spine w/contrast - Arthritis
    MRA Brain (arteries & blood vessels for pulsating tinnitus) - Normal
    EEG - Normal
    EMG - Carpal Tunnel both wrists (right pretty bad) I do not have a job that could have caused this.
    EKG, Thallium Stress, Echo cardiogram and Heart Catherization - normal Thank God.
    Two 24hr. urine to rule out Pheochromocytoma, and Systemic Mastocytosis
    Countless blood work which ruled out Rheumatoid Arthritis, Lupus, and countless other things.
    Eliza test was negative
    Thyroid ultrasound which shows multi nodular goiter, blood work okay and endocrinologists says it is fine my symptoms are from menopause and anxiety(I wanted to hit him)
    Cat Scan with dye of abdomen and pelvis - normal except small lesion on kidney doctors said was fine.
    Skin biopsies of rash - don't know just said dermatitis
    Normal female exams - all up to date and good
    Endoscopy and colonoscopy both with biopsy because of Barretts esophagus and a polyp - Normal (these are routine for me)
    Vitamin D was quite low so they put me on that
    Monocytes count was 13 should be 3-12 Doctor still said it is normal

    Seen the following Doctors: Family, Internal, Cardiologists, Allergists, Rheumatologists, Endocrinologists, Gastro, Gyno, Derma, Physiatrist (PMR doc) and 2 neurologists.

    I had Physical Therapy which helped me alot with neck and back stuff
    Meds I have been on Lyrica, Motrin, Skelaxin, Cymbalta and different sleeping pills. The only thing that helps a little is the Motrin. I even wake up when I am on the sleeping pills and I have tried 4 different kinds.

    I don't know how long I can go on with this head pressure, pulsating tinnitus, burning, numbness and lack of sleep (about 5 hrs. a night) The other symptoms come and go.

    Thank you all so much for your responses.


    Karen
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    Old 12-27-2006, 01:05 PM   #2
    aim4relief
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    Lightbulb Re: Please help me find out what is wrong with me!!!!


    i am not a doctor like i have mentioned on several occasions. sounds like a lot of things. but what i will say is i have 3./4 of those symptoms everyday especially the one of waking up with a hangover feeling which i have every morning of my life. sounds like you could have the famous fibromyalgia.but your best bet is see the doctor ten to one it's either fibro or cfs.
    keep us posted.
    love ya
    Trish

     
    Old 12-27-2006, 01:06 PM   #3
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    i am not a doctor like i have mentioned on several occasions. sounds like a lot of things. but what i will say is i have 3./4 of those symptoms everyday especially the one of waking up with a hangover feeling which i have every morning of my life. sounds like you could have the famous fibromyalgia.but your best bet is see the doctor ten to one it's either fibro or cfs.
    keep us posted.
    love ya
    Trish

     
    Old 12-27-2006, 01:17 PM   #4
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    Re: Please help me find out what is wrong with me!!!!

    I think it's your thyroid.....thyroid's can do a lot of wierd things. You already know you have a multi-nodular goiter.....he wants to just leave it there? My opinion is....remove it....is he treating you with anything for it? Find a different doctor, who is open to your concerns.

     
    Old 12-27-2006, 01:47 PM   #5
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    Re: Please help me find out what is wrong with me!!!!

    Yes, I'd probably investigate the thyroid some more too, getting a second opinon (or more) can be a good thing sometimes.

     
    Old 12-27-2006, 01:58 PM   #6
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    Re: Please help me find out what is wrong with me!!!!

    I would make sure that I had a FreeT3 thyroid test... Free T3 is the active part of the thyroid gland. You your doctor didn't do this he is an idiot. Also what were you other thyroid scores... Have you ever had an intracellular magnesium test... Has to be intracellular, not just normal serum test.?

     
    Old 12-27-2006, 07:06 PM   #7
    ventcrew
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    Re: Please help me find out what is wrong with me!!!!

    Hello to all,

    Thanks to all for replying so quick. No the Endocrin is not treating me at all. He said all my counts were fine they are as follows:

    TSH .64 (March 2006) normal .40 - 5.5
    T3 Total 133 (Aug 2006)) normal 60-181
    T4 (Thyroxine) Total 8.9 (Aug 2006) normal 4.5 - 12.5
    TSH 2.45 (Aug 2006) normal .40 - 5.50
    Thyroid Stim Immun 1.3 less than 1.3 not detected
    (March 2006) 1.3 - 1.5 indeterminate
    greater than 1.5 detected
    Thyroxine Binding Globulin 22.6 normal 14.0 - 31.0
    Total T4 12.5 High normal 4.6 -11.6 (March 2006)

    Those are all the Thyroid tests I had done. I also had the ultrasound but the endocrin said it is okay. I guess I should get a second opinion.

    I also think I will call my neurologists tomorrow because of the occipital headaches, head pressure and pulsating tinnitus.

    Any other ideas please let me know. Thanks again

    Karen

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    Old 12-27-2006, 07:38 PM   #8
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    Re: Please help me find out what is wrong with me!!!!

    I did not see a Free T3. This is the most important number of the thyroid. All you others can be in line, but if you thyroid is not converting your T4 to Free T3 then you can have a problem. I would insist that it be tested. My mother's numbers were all within limits, but when we finally found a doctor to test her Free T3 it was out of line. WIth treatment (armour thyroid) her free T3 is now within limits but her other numbers are out of line. However her symptoms have gone away. You doctor should be treating you symptoms, not your numbers. ALso the High end of TSH that you lab uses is not the correct upper limit...it was changed 2 years ago. ANd it is not true that different labs have different values as they would probably tell you. A gallon of gas in florida is the same quantity as a gallon of gas in new york. Also you need to have you magnesium checked. You probably need an entire intracellular nutrient panel done. spectracell in Houston can do this with blood taken at your locals doctors office. Most insurance will cover it.

     
    Old 12-27-2006, 08:08 PM   #9
    ventcrew
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    Re: Please help me find out what is wrong with me!!!!

    NHone,

    Thank yo so much for all your help. I will have my doctor check this. My family doctor will and if it is off I will find a new endocrin. I will also do the other things you mentioned. Again thanks for your help. Any idea about all of the head symptoms I am having?

    Thanks again

    Karen
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    Old 12-27-2006, 09:10 PM   #10
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    Re: Please help me find out what is wrong with me!!!!

    Quote:
    Originally Posted by ventcrew
    I also think I will call my neurologists tomorrow because of the occipital headaches, head pressure and pulsating tinnitus.
    well, this could be a lot of things potentially, however, you may want to see if it could be a sinus infection and/or middle ear infection. There are different kinds of sinus infections and when they are bad, they can be quite serious and in some cases even fatal. You may not even know you have a sinus infection sometimes until it starts to get bad and ear infections can sometimes be difficult to diagnois. This could potentially explain the head pressure and pulsating tinnitus. A cat scan can help see if this is the case as far as sinus infection and sometimes ear as well i've read. I think a lot of docs may still like to do just an xray, however I read that there was a study and only a little over half the time did the xray actually show that there was a sinus infection going on. I could be totally wrong on this all for your situation, but I just thought I'd throw it out there just in case, you could ask the doc what he thinks.

    Last edited by PearlDoves; 12-27-2006 at 09:10 PM.

     
    Old 12-27-2006, 11:13 PM   #11
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    Re: Please help me find out what is wrong with me!!!!

    You might want to search you head symptoms with vitamin depletions and also Dr. mildred seelig low magnesium. Forgot to say before, because of the nodules you have on you thyroid, the thyroid might also be cycling off and on. much like a compressor cutting off and on, when the thyroid should be on all the time. This would give you normal readings on the numbers your doctor tested despite have abnormal Free T3, the active thyroid hormone.

     
    Old 01-29-2007, 06:50 PM   #12
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    Re: Please help me find out what is wrong with me!!!!

    I have alot of the same symptons. Had alot of the same tests done. I actually had two sinus surgeries and still can't breathe. I still get horrible headaches. I lost a little sense of smell too. Before the first surgery the cat scan showed there was hardly any air on both sides. The second showed one side had closed with scar tissue. Both showed that it was bad over my eyes. But both doctors said they would not touch that because it was too close to the brain. So really I never got better. Everyday now my sinuses are killing me. It's horrible. I just had a brain MRI since I was diagnosed with Narcolepsy. I didn't realize it would show the sinuses on top. I guess we will see what it shows. I should have the results tomorrow. I am hoping the MRI is okay. I'm having horrible pain recovering from spinal fusion. I have 3 herniated discs in my neck. Just had an EMG and luckily it was okay. You don't realize how sinuses can make you feel really bad. Before my first sinus surgery I had a horrible cough. It was horrible. I couldn't talk. All was related to the sinuses.

     
    Old 02-01-2007, 05:34 AM   #13
    ventcrew
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    Re: Please help me find out what is wrong with me!!!!

    Hi All,

    Thank you all for responding. Hessie28 please post and let me know how you are doing and what you find out. I went to my ent yesterday and he ordered a cat scan of my sinuses and a cat scan with and with out contrast of my neck. I already had a normal brain MRI. I got a call from my endrocrin yesterday and he said they found that a nodule on my right lobe of my thyroid grew from a .4 cm to a 1.1 cm in 9 months and that I need to have it biopsied (ya think). He is the same doctor that just told me in February that there was nothing endocrine wrong with me that it was all menopause and anxiety. My thyroid levels were on some just a hair off. My ENT went up my nose and down my throat to check things out and said everything looks really good. So we will take it from there. Thanks all for responding.

    Ventcrew
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    Old 02-11-2007, 10:44 PM   #14
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    Re: Please help me find out what is wrong with me!!!!

    You could have lyme disease. You should suggest that to your doctor quickly, the sooner the better. I know you've been to many doctors, just not the right one. No one has picked up on it and I can't believe it. I can't believe your neurologist didn't pick up on it. Try going to an Infectious Disease Specialist, and tell them all your symptoms, kind of like what you wrote on your message board, and dates if you can When it started, how long it lasted. Or you could also try an Internist. You should really be treated as quickly as possible. You can do a little research online if you want but don't rely on the internet for good information, there isn't that much, there is but its hard to find. You would benefit more from a book. I just recently bought a book last week. "Coping with Lyme Disease, A Practical Guide to Dealing With Diagnosis and Treatment" By Denise Lang with Kenneth Liegner, MD. Its an outstanding book with great and education information. I learned so much and its the first book I've actually finished in years, in less than a week. Most doctors don't know that much about lyme disease, although its getting out there and doctors aren't ignoring it so much. I think you were from Michigan ( I can't remember, I think thats what it said when I looked), also that's not really a popular state to have lyme disease but actually all 50 states have had cases of Lyme. Mostly coastal states, but its made its way around the whole Unites States. There is a lot about Lyme Disease in that book that would clear up a lot of your problems. Its so weird that I came across your post tonight because I wasn't even looking for anything like that, and coincidentally I just finished reading that book because I think I have Lyme disease and that's why I got the book. Your doctor will order you a blood test but it might come up negative, it might not. The Lyme spirochete has the ability to shield itself and hide. So when you do get a blood test specifically for lyme, it may turn up negative, but that doesn't mean you don't have it. Most Lyme cases are and need to be diagnosed clinically, for the simple fact that blood tests are not reliable. Your doctor should know this, if they don't go along with or are submissive to that fact that you think you might have lyme disease and disgree or even dismiss it, than you need to find another doctor, (after the fact when you read the book, or even do a little research online and see that you have almost every symptom, and those are just general symptoms that are listed online. I think you will strongly agree with me that you may have lyme disease). AND you don't have to have a tick bite that you remember or a rash. A large percent of lyme victims DO NOT get the rash. I would strongly advise you to do some research and get that book, it such a great book and so informative and I know after you read it, your going to be shocked. The only true cure for lyme is antibiotics, in some cases with other treatments. Let me know if you already found out what was wrong with you before I posted and wrote all this stuff for nothing but that's ok. Let me know what happens and keep me posted. Im curious to know if I'm right and to see what really is wrong with you. Hope you figure it out and get better.

    Brenda

    Last edited by Fortitude; 02-11-2007 at 10:52 PM.

     
    Old 02-12-2007, 10:11 AM   #15
    ventcrew
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    Re: Please help me find out what is wrong with me!!!!

    Brenda,

    Thank you so much for responding. I seriously have considered lyme disease. I have been tested for it just by the one simple blood test and it came back negative. I did have 2 ticks on my back if July 2001. I never remember getting a bullseye rash but I do get rashes just on the right side of my body. I found the 2 ticks on my right upper thigh. I do not know if I had any more on me. I was up in the upper peninsula of michigan which in that county does have lyme. It is posted on the CDC map as so. I have gone on with other testing because I want to make sure I do not have a tumor or anything. The worst of my symptoms are positional (when I am sleeping) or when my body is asleep (maybe hormonal not just menopause,or endocrine). Since I last posted I have had an MRA of the brain, MRI of chest, cat scan of sinuses and neck and a thyroid ultrasound. They did find out that at least one of the nodules on my thyroid grew from a .4 cm to a 1.1 cm in 9 months. All the other tests came back pretty good Thank God. I have a spinal tap scheduled for this Thursday Feb. 15. They are checking alot of things (opening pressure, lyme, protein, etc. ) I also have a FNA biopsy on the 1.1 cm thyroid nodule of Feb 23. That is the last of my testing. My doctor wants me to go to Mayo, but depending on the results of the following tests
    I intend on making an appointment with a lyme literate doctor here in Michigan. We have 2 real good ones I am told and only about 1 - 3 hours away. Its funny but I had a submandibular gland infection a couple of weeks back and they put me on antibiotics, just 500 mg. of amoxicillin 4 times a day. I feel so much better on them. Its weird. I only have about 3 more days left. It really makes me wonder. I really appreciate your response. I will let you know what else I find out. If there is no answer with these tests I am definately pursuing lyme disease. I have been doing alot of research. I will also get the book you mentioned. I will even pay out of my pocket to get my blood tested from the Igenex Lab in California. I don't know if you know about that. Supposedly they are the best lab for lyme disease. Look them up on the web if you need more info or on the lyme disease boards here.

    You said you think you have lyme disease. Were you tested for it. What state do you live in. Are you being treated for it. What are your symptoms. How are you doing. I look forward to hearing from you. Thanks again.

    karen

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