New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Kel84
New Member


Date Joined Aug 2010
Total Posts : 12
   Posted 9/24/2010 9:51 AM (GMT -6)   
Hi everyone,
 
I used to post on this forum several years ago, but fell out of touch after losing my health insurance policy and being unable until now (finally!) to obtain it and figure out my crazy health problems.  I have my first doctor appointment next week with my new insurance policy, so... yay!
 
To make a long history of health problems short, I'm going to say that I struggled with many, many, MANY symptoms for years.  I was misdiagnosed with CFS and Fibromyalgia before having them ruled out due to underlying conditions causing the symptoms.  Then I had an ANA test done which was positive at 1:320 with a homogeneous and speckled pattern, which remained consistently positive at this level.  An auto-immune disorder was suspected (I've got an aunt with 'borderline' lupus, and my grandfather is now being treated for lupus, and my mother is suspected as she has joint swelling, arthritis, and interstitial cystitis), but my doctors were at the time leaning more toward the neurological side, as I've got orthostatic hypotension (and was actually diagnosed with Neurally Mediated Syncope), but this stuff doesn't begin to explain ALL of my problems.  It seems that every system in my body is faulty, and my last doctor thought that the neurological problem was another symptom of an overall cause, rather than the cause itself.  She was leaning toward an auto-immune disorder.  But, I was dropped from my insurance policy as I went over the maximum age limit to remain on a parent's policy (22), and was unable to obtain insurance due to pre-existing conditions. 
 
I've got an appointment next week to begin this process all over again, which isn't a moment too soon.  My symptoms have been wild lately.  But my number one complaint right now, outside of the fatigue, is how dehydrated I am.  No matter what I do, I'm dehydrated.  My neurologist thought that maybe I wasn't drinking enough water, and then later thought maybe I was drinking TOO MUCH water and not getting enough electrolytes, so he put me on a high-sodium diet and had me switch from water to Gatorade.  This didn't help.  I've tried everything - eating a lot of sodium, eating little sodium, drinking 8 glasses of water, drinking 8 glasses of Gatorade, avoiding coffee, alcohol, soda, or anything else that causes you to be dehydrated... it doesn't matter what I do.  I can feel how dehydrated I am inside my body, which is a terrible feeling.  On top of this, my skin is incredibly dry (when I get out of the shower after shaving my legs, I run right for the lotion and Vaseline because the itching and burning caused by shaving is unbearable... I've tried every kind of shaving cream, razor, lotion, etc, and my skin is just too dry and sensitive), my nerves in my feet are next to dead (neurologist said this was most likely caused from dehydration, and also the same nerve fibers that cause my blood vessels to fail to act when standing, resulting in low blood pressure), my hair is dry and damaged and falls out in ENORMOUS clumps, I absolutely have to stay out of the sun or my face gets incredibly dry and the skin flakes off - even if I don't burn... every doctor I've ever gone to has noted that I appear dehydrated.  My fevers get dangerously high, and they say this is due to dehydration.  When I had a laparoscopy to diagnose endometriosis, they were so concerned about my being so dehydrated that they almost admitted me to the hospital for the night, and refused to let me leave until pumping me full of 3 bags of fluid and making me drink 3 bottles of water and some juice.  I pee a lot - everything I drink seems to just run straight through me without doing what it should.  The thirst is incredible.  I produce tears and saliva just fine, so it's not Sjogren's.  But, I am ALWAYS THIRSTY!  Always.  I always have to have ice cold water available.  I've become a gum addict to lessen the thirst feeling.  I also always had high protein in my urine, which they said is common when you're dehydrated.
 
This stuff isn't just an inconvenience.  Having to drink so much fluid and use the restroom after while I'm at work or in public... it's definitely interfering with my life.  If dehydration is the cause of my neurological symptoms, I have to wonder what is causing the dehydration? 
 
Has anyone experienced this?
 

Post Edited (Kel84) : 9/24/2010 9:59:40 AM (GMT-6)


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 9/29/2010 5:25 AM (GMT -6)   
Hi Kel. I'm sorry no one responded sooner. Your dehydration is so odd that probably no one knew anything about it. I'm sure with all your tests you were tested for diabetes, but I'd ask to be sure. It makes one thirsty and to pee.
 
Also I highly recommend you see a nephrologist (kidney doctor) because constant high protein is very abnormal and you could be really hurting your kidneys.
 
As for the dry skin, lots of us have it. First, you need to be in the water as little as possible. I recommend that you shave your legs while out of the shower (I know this sucks). Next always make sure the water is warm not hot. Try to find a bar of soap that you can tollerate. I got to a point that I could only wash the "important parts" cause any soap caused me to itch. Lastly, I found some relief taking warm baths with Aveno oatmeal bath.
 
It sounds like you're really miserable. I hope the docs figure this out and quickly! Love, Butterflake

jdrea
Regular Member


Date Joined Aug 2010
Total Posts : 124
   Posted 9/30/2010 7:47 AM (GMT -6)   
Kel, I don't know if you have an allergies but I know that if I get ahold of a bar of soap with any kind of coconut in it (most have some form of coconut) my skin gets so much worse and if I use it frequently then I scale up like a snake. May lotions also have coconut in them. I joke that peeing has become my new habit. After 11 months of knowing where the nearest bathroom is it is getting really old. I would have to agree with butterflake about seeing a kidney specialist just to make sure that your kidneys are ok. Diabetes can also cause horrible thirst. I think that you should have some allergy tests ran just to make sure you don't have any allergies that you don't know about. I am also allergic to yellow 5 and it is everywhere. It affects my skin as well. I hope that your dr can help you out. I know how frustrating it can be not having insurance and not being able to get it because of pre-existing issues. Next week will be my first trip to the rhuemy and I hope they can give me some answers. My ANA is also 1;320 at least it was last month it has been getting worse every month and my pattern is speckled too. The strange thing for me is that my SED rate is only 5. So who knows. I will be praying for you. Let us know how your dr visit goes and if he has any ideas about your dehydration.

Kel84
New Member


Date Joined Aug 2010
Total Posts : 12
   Posted 10/1/2010 3:58 PM (GMT -6)   
Thank you so much for your replies!

Well, I just hit the diagnosis jackpot. As it turns out, an old test I had done and thought came out NORMAL was anything but. It was one of the last tests I had done before losing my insurance, so I never got to talk to a doctor about it, but they had told me that they would send me a letter if there was something wrong, and I never received anything. I got ahold of the results, and didn't know what they meant. It was a cortisol/acth stimulation test, and, as it turns out, the results showed that I had Secondary Adrenal Insufficiency (which is like Addison's Disease, but the pituitary gland is malfunctioning, instead of the adrenal glands). This causes a good portion of my symptoms, including the dehydration! Woooooow, all these years, and I never knew! I knew that my cortisol level usually tested low (not dangerously low, but low enough to cause a few symptoms) but was told that it might not mean much, if anything. As it turns out, it means almost everything!

Theeeen, this afternoon I had an echocardiogram done on my heart and my arteries. First, they found mitral valve regurgitation and tricuspid valve, with the mitral valve being worse. Then, it showed that I had an insanely large number of premature atrial contractions, plus arrythmia and tachycardia issues (which I already knew). I have to see a cardiologist in regards to Mitral Valve Prolapse, and the PAC's, and I'll have to have a test where I wear one of those 24 hour testing things to monitor the PAC's.

And theeeeeeen, as it turns out, I've not only got a tortuosity in my right carotid artery, but also a giant kink that is causing 60% blockage, and it looks like I'm going to need surgery to put a stint in to open it up. Wow! I didn't even know that kind of stuff could happen to a 26 year old, but, I guess it's all possible.

Now I'm really on a roll with this stuff... they used to tell me it was all in my head, but obviously, I AM NOT CRAZY, AHHHHH!

The question remains, though... why on earth do I have ALL of these problems? I understand the cortisol issue causing my neurological symptoms and maybe even heart problems, but then some others seem completely unrelated to all of that (and, I'm guessing that the artery problem means that I just got REALLY unlucky and is unrelated). I know that Addison's Disease is sometimes classified as an auto-immune disorder and can cause a positive ANA, but I wonder about secondary adrenal insufficiency? I wonder if that cause all of my other systems to go haywire, or is the problem still in the auto-immune department, resulting in multiple system symptoms/disorders, and that the adrenal insufficiency is just another by-product?

Ahh, I'm so happy to have some positive test results (sad, right?!)!!! I'm actually getting somewhere!

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 10/1/2010 6:39 PM (GMT -6)   
I am so sorry that doctor didn't contact you. You might have to consider talking to a lawyer about your rights because it strikes me as malpractice but I am no expert. I am so sorry all this is wrong with you. I have no idea what kind of issues low cortisol levels causes but I would definately see an endochronologist to get help with the cortisol issues.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Vicodine when things get too bad, prednisone again, various vitamin/mineral supplements, cozar, duragesic patches
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

Kel84
New Member


Date Joined Aug 2010
Total Posts : 12
   Posted 10/1/2010 8:13 PM (GMT -6)   
The doctor thing... it was kind of weird the way it happened, but it was actually the Mayo Clinic in Jacksonville, Florida. When I got referred there, I had a 'coordinating doctor' who was a Rheumatologist. He referred me from there to every kind of specialist there was, and coordinated their results and pulled them into his own. The very last test I had done there, just two days before losing my insurance policy, was the ACTH stimulation test. I was actually supposed to go back to the Mayo again at a later date to coordinate more of the results, including that test, but unfortunately, I no longer had insurance, so I never went back. I've basically been sitting on these results ever since, and I thought they meant nothing. It looks like I'll be put on prednisone or hydrocortisone for it.

I'm so happy to know what's wrong with me and why I have these symptoms! But, I'm still confused as to why I have multiple disorders, along with a few other symptoms that aren't really explained by these. Am I just this unlucky or are they connected? I still have to wonder if my positive ANA means something, even if I don't have achy joints? I just want to get to the bottom of it all so I can understand why all of my systems are affected! But I guess they'll treat me for the disorders that have been found and see how I feel... I'm just tired of waiting!

jdrea
Regular Member


Date Joined Aug 2010
Total Posts : 124
   Posted 10/5/2010 12:24 PM (GMT -6)   
I hope that now that you know what is going on that you will be able to find some relieve. If you are to have surgery just know that you are being prayed for. I wish you all the luck and I am so happy for you as far as finding out what your mystery is.
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, June 20, 2018 3:55 AM (GMT -6)
There are a total of 2,973,728 posts in 326,344 threads.
View Active Threads


Who's Online
This forum has 161120 registered members. Please welcome our newest member, maybellpeltier.
352 Guest(s), 3 Registered Member(s) are currently online.  Details
maybellpeltier, Crazyick, halbert