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Old 07-25-2012, 10:46 AM   #121
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Re: Invisible illness, very sick.

I have some copies of the lab results. I will find them and post the results. My blood sugar levels are always normal (90's). I am not taking a potassium supplement since it comes back normal even when I am feeling really sick. I do drink lots of powerade because I am constantly dehydrated, dry mouth and eyes. I have also developed a geographic tongue and scalp sores. Everytime I am about to get very sick again the first smptom I get is the geographic tongue, the scalp sores and the joint pain. After all that I get muscle twitching all over, arrythmias, tachycardia, headaches, nausea, diarrhea, etc. I forgot, my thyroid was checked multiple times (basic checks) and everything came back normal.

 
Old 07-25-2012, 04:46 PM   #122
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Re: Invisible illness, very sick.

Mojo just an update on my adrenalin test.
My appointment isn't for two weeks but I had a really bad day today and called to find out something. Last week the tech and manager of Dept told me unofficially they were seeing something and he thought I would have answers soon.
Today my blood pressure did funky things again and I felt terrible so I decided to call. My doctor is awesome he called me back that day! He said something showing on both adrenalin glands and we have to do more tests. Said not sure till we do more blood work and Mri. I so hope I will have an answer. Today was awful like I had back in may and before. I have a four hour trip tomorrow and hope I am not like today. I don't want to miss my child's world series but also don't want to ruin everyones time if I have more episodes. Cross your fingers this is the beginning of an answer

 
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Old 07-26-2012, 12:44 PM   #123
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Re: Invisible illness, very sick.

Stressedtomax,

I am sorry to hear that you are feeling terrible but at least it looks like your doctors are making good progress. Hopefully the doctors can give you a diagnosis soon and you can start treatment and feel better. I had an appointment yesterday with my gastroenterologist. He told me that he believes that my stomach problems are part or caused by something else. He requested a copy of all my lab results from my PCM to see if they are missing something. He also said that he is going to order more 24hr urine collections because based on all my symptoms he is starting to believe that I have either a carcinoid tumor or some other king of functional tumor releasing adrenaline or some other hormone that is causing me to feel so sick. I am praying for him to see something the other doctors have not and come up with a diagnosis or at least determine if my problem is endocrine or autoinmune and refer me to a specialist. I had a great day yesterday, probably the best one I've had since november but today I am feeling a little sick again and it only gets worse at night. Hopefully it won't get worse. I have plans involving my two boys for the weekend!! Hope you feel better soon!!

 
Old 07-26-2012, 11:45 PM   #124
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Re: Invisible illness, very sick.

MOJO did you ever find out a diagnoses?

 
Old 07-27-2012, 07:06 AM   #125
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Re: Invisible illness, very sick.

Caryn64,

Unfortunately I have not been diagnosed yet. My doctor said that I have symptoms similar to those of a functional tumor so I guess we are goingto start to look for that. I'll keep you posted.

 
Old 07-27-2012, 12:54 PM   #126
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Re: Invisible illness, very sick.

Mojo thanks I hope u get answers soon also. I think it is some adrenalin thing or tumor also. It seems like my female cycle makes it worse. I think this makes sense all those hormones adding to it all. So far I have made all my child's games just not looking or feeling great. Yesterday a storm swept thru while there was opening ceremonies. Everyone had to take cover and we were all seperated. Chaos. If ever there was a time to have heart failure that was it. We are all ok but was it scarey.
I have bad mornings instead of nights.. let us know when u have answers. Hope u have a good weekendwith ur kids also

 
Old 07-27-2012, 01:43 PM   #127
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Re: Invisible illness, very sick.

Does barometric pressure has any effect on your symptoms? Low barometric pressure and cold make me feel worse.

 
Old 07-27-2012, 02:42 PM   #128
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Re: Invisible illness, very sick.

Not really sure. I do think I feel better if its a nice day and I am able to walk a bit. Of course on a really bad day I cant walk. For awhile they thought I had a hyper version of pots but want to rule out sdrenals first. If this was a doctors relative it wouldn't take a year or more to figure things out.
People don't understand. I had s few people tell just have a drink. If I did that I think I would end up in hospital. I wish I could but then I wish I could just enjoy walking

 
Old 07-27-2012, 05:37 PM   #129
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Re: Invisible illness, very sick.

I know exactly what you mean. But hey, if you can rule the adrenals out that is a very important step. The adrenals, including a tumor, can really hurt you. I do push myself a little and walk and swim a lot even if I don't feel too good. I can tell if bad weather is coming our way because all my symptoms get significantly worse.

 
Old 07-28-2012, 06:29 AM   #130
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Re: Invisible illness, very sick.

I am feeling really. Bad this morning. Blood pressure high whenever I get up. I can walk but having the usual pain below sternum and the neck and left side of face pain. Pain very worse with any. Bending movement. Also have nausea and pain just above my left hip bone. My eyes are blood shot and left eye just burst s blood vessel. This happened earlier in week also. I am scared this is getting bad again. And I am three hours away from home in a hotel room. Feel like I am going to puke

 
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Old 07-28-2012, 07:43 AM   #131
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Re: Invisible illness, very sick.

Stressedtomax, you need to go to the ER if you are feeling that sick. I get that neck, sternum and hip pain that you mentioned. The neck pain is the one that I hate the most. I hope you feel better soon.

 
Old 07-28-2012, 08:10 AM   #132
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Re: Invisible illness, very sick.

I am trying to wait and see if it gets better. When I lay down my bp goes down and I feel a little better.
Er doesn't usually do anything. If it gets worse I will. Went to bathroom blood p 134/101 which isn't too bad but felt terrible laid down. 124/78. Now it is down to 111/69. I took my blood p medicine two hours ago. Hurts to lie on left side. Just want to go back home. I know it will get worse if I try to do anything

 
Old 07-28-2012, 09:23 AM   #133
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Re: Invisible illness, very sick.

Decided to try again and walk. First. It shot up from 114/72 pulse 106 to 150/101 pulse 106. I walked slowly and contours to check it went down to 127/92 pulse 97. But then I started to feel a little worse not sure if I made a bending motion or just walking and it started to go up again. So I will continue to monitor. My past experience with er is waiting hours and then maybe running a test and telling u if u can lie down at home and keep ur bld p down u can wait to see ur doctor. So if the pain and blood pressure get worse I will go otherwise I will try to get home to call my many doctors.

 
Old 07-31-2012, 04:46 PM   #134
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Re: Invisible illness, very sick.

First off: All of you who have been dealing with these horrid symptoms - You have my sympathies. Be strong!

I don't have anything helpful to add other than my story. I began having odd symptoms at the age of 27. I, too, was previously very active, good weight, in shape, ate clean. One day I woke up and something was different. I ate lunch that day and had almost immediate diarrhea afterwards, barely making it through the drive back to my office. I had no idea what happened, as I'd never experienced anything like that in my life. Unfortunately, that symptom has not gone away, three years later. It's constant.

In the following months, I developed excessive hair shedding, multiple floaters in my right eye, extreme fatigue, constant dehydration, dried out lips despite huge fluid intake, overall weakness, loss of motivation, night sweats, facial flushing at random times while watching tv or sitting at my desk, elevated body temperature, heart flutters and pounding heart that would wake my from my sleep, etc. etc. I am now a shell of what I was before. I stopped exercising because I'm too damned tired ALL. THE. TIME. I ended up quitting my job (that I enjoyed) because I couldn't handle running to the restroom several times a day, during meetings and off site events.

I became pale (except when I flush and turn bright lobster red. My hair is fragile and falls out a ton. Migraines that I'd had for one awful year when I was 13 and entering puberty returned and they're as horrible as ever.

I've been to 6 doctors in the past 2.5 years. Most disregarded all but one symptom - diarrhea. As soon as I mentioned that, doctors' faces light up and they exclaim "It must be IBS!" It's not.

So now I've run the full gamut of gastroenterology tests. All of them. Every single possible invasive and surface test. After all of it, I have no diagnosis other than an unexplained super fast transit which is causing the loose stools.

My other symptoms are untreated, unaddressed, and overall not cared about. Like many of you, doctors think I'm stupid and depressed and want attention and am making mountains out of molehills. It's embarrassing, it's degrading, and it's damned expensive pursuing these issues. I am at the end of my rope and I'm just about to turn 30. My life stopped when this crap started and if I'm depressed, it's only because I've lost all my dignity and self-respect for being so 'weak.'

The first thing that came to mind when I first began experiencing these symptoms is carcinoid syndrome. It took me 3 minutes to google my symptoms and come up with that, however if I mention it in a medical facility, you'd think I was saying a holiday unicorn poked me in the chest on a stopped highway and my symptoms began. Instead of testing for hormones the doctors push me off and say that's not even a possibility.

I LOOK pretty darned healthy, to be honest. I fear that is part of the problem. I haven't lost weight from this, in fact I've gained about 8 pounds. However, I FEEL like crap on a daily basis and it has affected my life a ton.

I feel such sadness for anyone whose symptoms are worse than mine, because I have no clue how you can handle it. You're braver than I.

 
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Old 07-31-2012, 05:38 PM   #135
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Re: Invisible illness, very sick.

Many doctors just want an easy answer. If its not what they specialize in they just pass u on to another specialist. I made it home from my trip. As usual I was a little better that evening. The next morning I made to car and watched my daughters last game in a lawn chair next to car. Thank God it wasn't on s field wherein would have had to walk far. Slept most of the way home. As usual after this happens. I have a really hard time eating. Monday we were suppose to go up north camping. Monday morning felt extremely bad again. My family went without me. We had already paid for trip. I called my endocrinologist and he saw me today. He said both adrenals show up take. He doesn't know what to make of it. So now an mri of glands is next. Also a doppler of caratoid arteries. He said tumor there maybe. He said just doesn't know. Maybe barareflex failure (spelling?). At least he is trying.

But I am scared that I will not discover what is wrong until it is too late. Today I don't feel great but get this now my bo is extremely low. Sitting it was 95/50 and 91/49! So obviously blood pressure mess work when I am not spiking. Lol .
the doctor says go ahead and go up north to your family. Just keep doing what you are doing. My family wants me to. I sm just scared to be so far from hospitals not that they done much for me in past. Inbetween episodes I feel bad but the episodes can feel like I am in a life threatening crisis.sorry hard to type on kindle and dumb auto correct.

 
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