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Old 07-31-2012, 06:58 PM   #136
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Re: Invisible illness, very sick.

Correctusage,

I know exactly how you feel because I've been going through something very similar since November 2011. It is an awful feeling, not only the physical symptoms but also the way doctors look at us. Me, for the first time since November had a great weekend and felt 100% fine but last night all my symptoms came back and now I am feeling like crap. I have all the symptoms you have and some more but I've never had flushing. My gastro ordered a 24 hr urine test to specifically look for the chemicals that a carcinoid tumor releases and for some other stuff released by adrenal tumors. The only thing that makes me feel better when I am feeling sick is tylenol pm. I don't know what it is but tylenol pm makes a big difference but today I can't take any because I have to be medication free for the urine test that I am planning on starting to collect tomorrow morning. I always post an update after my medical appointments. My next one is on the 9th. I hope you feel better soon.

 
Old 07-31-2012, 07:11 PM   #137
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Re: Invisible illness, very sick.

To correctusage,
Please pursue with a rheumatologist a hunt for lupus, and ask for an order for a 24 hr urine for 5-HIAA, a good test for carcinoid syndrome. You may also want to explore gluten intolerance, dairy intolerance, as that can cause bad diarrhea. No one should have to live with these problems. I would go to DR looking as bad as you can-no makeup especially, so they can't think "you look good so you must not be sick".

 
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Old 07-31-2012, 07:21 PM   #138
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Re: Invisible illness, very sick.

Ladybud,

That 5-HIAA is one of the test my dr ordered. I am a little worried because a carcinoid tumor is something that I don't want to have. One problem that I have is that I don't look sick. I actually still look extremely athletic even though I don't do much exercising anymore and feel very sick most of the time.

 
Old 08-01-2012, 06:52 PM   #139
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Re: Invisible illness, very sick.

hi im a 23 year old male and was extremely fit went to the gym religiously doing heavy weights about a year ago and now im confined to my bedroom feeling ill everyday i cant eat i get dizzy and weak nausea sometimes and hot flush feelings oviously this is making my very anxious and depressed only thing that has turned up from doctors is high cortisollevels and low bp 99/69 my life is a wreck i cant go anywhere i just want to be a fit young guy again.

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Old 08-01-2012, 07:39 PM   #140
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Re: Invisible illness, very sick.

Stefan1989,

I wish I could help you. I've had high cortisol levels just like you but with a high blood pressure. My doctors have no clue of what is wrong with me. I usually feel very, very sick. The only thing that gives me some relief is Tylenol Pm and gatorade or powerade.

 
Old 08-06-2012, 03:03 AM   #141
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Re: Invisible illness, very sick.

Mojo,
Can you tell me what your ANA results were from your lupus test? Just curious, as some Drs ignore low level positive results.

 
Old 08-06-2012, 12:33 PM   #142
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Re: Invisible illness, very sick.

ladybud,

Will do as soon as I can find them!!!! I'll look at the ton of medical paperwork that I have at home tonight and let you know. Did I ever tell you that overcast, bad weather makes me more sick? I can already tell when bad weather is approaching by just the way I feel.

 
Old 08-06-2012, 01:05 PM   #143
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Re: Invisible illness, very sick.

I hear you. I could have a second career as a meteorologist. It is due to the effects of barometric pressure drops on the joint spaces and fluid. I can predict a storm or cold front 24 hrs. in advance with 99% accuracy.

 
Old 08-06-2012, 04:11 PM   #144
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Re: Invisible illness, very sick.

My ANA lab says:

ANA SCR...... Neg. <1:40 Titer

 
Old 08-09-2012, 01:45 PM   #145
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Re: Invisible illness, very sick.

Well, I saw my PCM today and she finally admitted that she doesn't know what is going on. The bad news is that she also said that she's not going to refer me to any other specialist since she doesn't have any evidence that there's something going on. She, once again blamed my symptoms on anxiety. I felt like punching her in the face. I told her that I am an adult and that I know my own body and that I am sick but once again she brought the anxiety thing again. My PCM is stupid and she obviously wasted her time and money on med school.

My only option and hope right now is my gastro doctor. He is still looking and he believes that there's something going on. I wish I could make an appointment with another doctor but my plan doesn't allow for that and the only other doctor they had in the area I fired her too so I ran out of doctors now.

I won't see my gastro for another month.

 
Old 08-13-2012, 03:24 PM   #146
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Re: Invisible illness, very sick.

@Mojo-
I'm sorry to hear your doctors have been of no help. I know how frustrating it is to be told its all in you head. I'm a cancer survivor and was told my symptoms of the cancer were all in my head too...until the biopsy proved otherwise. (NOT saying that I think you have cancer. I'm just saying that all kinds of illnesses get blamed on anxiety.)

So I had the hypoparathyroidism test done again and it came back normal. On the lower side but still normal. I can't honestly say I wasn't expecting that. I realize now that no one is going to be able to help me. The Gastroenterologist accused me of lying about one of the meds he gave me not working. I don't know what I would get out of making that up? People with a brain would think, "Hmm, if something that works for 99% of the population didn't work for her maybe there really IS something wrong with her?" Oh well. I asked my primary for an antidepressant to help me feel better mentally which I'm hoping will make it easier to cope with the physical symptoms. Or I'll at least have the mental strength to deal with them. I think emotionally I'm just wiped out. At least when I had cancer before they knew what it was and that it was one of the curable/treatable forms. Whatever is going on now is in some ways worse just because of the unknown aspect.


@Belle
I was wondering if you feel a 1:160 ANA Speckled pattern with mildly positive Antidsdna and chronically elevated sed rate (mid 30s) significant enough for some Rheumatologists? My ANA keeps fluctuating so the doctors just say it's a false positive. However, my Sed is always in the mid 30s and my creatinine levels are usually elevated as well. You mentioned that you know about Lupus so I figured I'd ask.

 
Old 08-13-2012, 04:57 PM   #147
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Re: Invisible illness, very sick.

Sillygal,

I guess we are going to be on the undiagnosed boat for a while. I truly believe that what we have is most likely an autoinmune disorder. I just decided that after I see my gastro again next month I will make an appointment to see my PCM again. I'm going to keep bugging her until she sends me to see another doctor for a second opinion or until I drive her crazy. You know, when I am feeling sick, even if I do a little bit of physical activity my hands swell up and she even had the guts to say that is all in my head (even when my fingers look like hot dogs!!) Anybody can o to med school now days and walk out of there with a diploma.

 
Old 08-30-2012, 12:18 PM   #148
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Re: Invisible illness, very sick.

Any updates from anybody? I'm still pretty much the same.

 
Old 08-30-2012, 12:49 PM   #149
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Re: Invisible illness, very sick.

I guess I am in the same boat as everyone one else. Had a MIBG scan for the adrenals and one of the techs thought it showed something. But the doctor said not definitive and ordered mri of adrenals. Then he said nothing was showing up. I was so upset I didn't think of the questions I should be asking. My only redeeming factor is I have had some doctors believe me. My old doctor kept saying anxiety and Gerd, but the past few do feel something is going on, they just don't know what.
The endocrinologist has ordered an MRI of my brain and we go over it next week. I asked for copy of MRI and peeked at it, nothing weird lighted up. The doctor said the next step would be to a referral to a university hospital to the secondary hypertension department. The cardiologist said she may refer me to automonic clinic. Of course, in the mean time I just wait and take bp medications that seem to not really working.
I have a couple days that I have felt ok when I am not doing too much. But then I have days where just getting out of bed causes bp to rise and multiple pains occurr. SO SCARY! Every morning I feel bad, even on a good day. The newest symptom is around my left eye. I have pain in my eye and below it, it is worse when I am on computer, reading, ,or sometimes just standing up! I am thinking my bp has damaged something, but I have to wait for our new insurance cards to do anything else.
I feel this is a multi system disorder, that affects, bp, nerves, digestion and god knows what else. I will shout it from the roof tops if they ever find the actual cause.
Oh, they have me taking mega doses of vitamin d and vvitamin b12 shots. I am sure that isn't the cause but I am willing to do about anything right now!
I am sure everyone here is sick of hearing people tell them they just need to relax, push through it, and try to be postiitve. UGHHHHH. I want my normal life back.

 
Old 08-30-2012, 01:50 PM   #150
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Re: Invisible illness, very sick.

I'm sorry to hear you are still feeling sick. In my opinion what we have is an autoinmune disorder. Today I have my neck nodes swollen, joint pain and a dry cough. My symptoms move around and they get worse with bad weather.

 
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