Discussions By Condition: I cannot get a diagnosis.

anyone have any thoughts?

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: armorburro
  • June 18, 2007
  • 05:37 AM

Hi. I could use some input. I am having some symptoms that docs can't seem to figure out. I've been through this before a few years ago & don't want to do it again. Last time I got progressively sicker & ended up in the hospital so weak I couldn't walk. From my symptoms then, the er thought I had ms. hospital finally did mri (I had no insurance, so they were slow/not too inclined to look much). said not ms - no lesions. must be psychological, a conversion disorder; I should see a shrink. Oh & by the way there's a big tumor on your kidney, you should probably have that looked at but we're sure it's nothing. they put me out of the hospital (since there was 'nothing physically wrong with me.' 2 months later finally got kidney & adrenal gland removed - renal cell carcinoma. symptoms were 'most likely' paraneoplastic syndrome. Not that that saved my marriage, since my spouse now thought I was crazy & left me after almost 13 years & has spent the last 2 years trying to convine the court that I'm crazy & a danger to my kids. (Was stay-at-home Mom raising 2 beautiful kids, then suddenly put out & having to fight just to try to keep some time with them. Anyhow I know that's a lot of background. Just trying to say why I don't want to have to go through this sort of thing again, you know?
So, about 7 months ago I started feeling fatigue & arm weakness again. 2 things that had started with the paraneoplastic syndrome last time. so I wanted to jump on it in case it was RCC metastasis, but had to wait 3 months or so for new insurance to kick in. by then having more symptoms, but new dr seemed proactive, sent me to GI dr & neuro. cleared by both, though neuro says clearly something is wrong, but he's done all the testing he can & everything is good (MRI of brain & c-spine w & w/o contrast MS protocol & EMG/NCV - all completely normal) GI dr did upper endoscopy/colonoscopy including random duodenal biopsies - 'a few' internal hemorrhoids, but all normal. meanwhile, while waiting for results, symptoms continue to worsen.
Here are my symptoms:
fatigue, weakness, loss of strength- progressively worsening especially arms/hands, moving slow - everything seems to take twice as long as it should, intention/action tremor - mostly R hand but also other hand at times & sometimes postural(?) tremor of head, weight loss - about 46 lbs in about 6 months (putting me about 23 lbs below the lowest weight I could get to no matter what LA Weightloss did to me) though I'm still eating the same, difficult to fully extend fingers - in fact unable to extend ring & pinky finger of R hand unless I pull them with other hand or push them against something, people complain that they can't hear me - like I don't even have the strength to talk loud enough anymore, pain in back up under lowest ribs - sometimes also in front under lowest ribs or though& through in both places, sudden onset 'directional confusion' - not sure what to call it I drive a lot (EMT) & lately I suddenly seem to go the wrong way & even when I try to correct it I'll go the wrong way again & end up going even farther out of the way (I normally have very good directional sense & can get places even if I just know which way it is from where I start) my Paramedic has commented on it lately & is worried, also I nearly black out when I stand up or even if I turn suddenly - sometimes even when I'm just standing still...
I think that's all. I'm sorry this is so long. I just need some answers. and while I think my new dr is proactive, my work just had lay-offs, & so my insurance will stop after 30 days unless I get my shift back before then. I can't pay for drs w/o the insurance... Thanks for reading this far.:rolleyes:

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11 Replies:

  • Which adrenal gland was removed (left or right)? Is this in the general area that you are feeling discomfort? What you are describing is symptomatic of Addison's disease (a hormonal insufficiency originating from the adrenal gland). This is not especially common, but is probably much more likely if you have only one adrenal gland. The feeling faint on standing is highly relevant and should be mentioned to your doctor. What blood tests have been carried out and do you have the results?
    Anonymous 42789 Replies Flag this Response
  • Left kidney & adrenal gland removed. yes same area where I have pain.Yes adrenal insufficiency was one of my first thoughts, right behind recurring paraneoplastic syndrome from a metastasis of the RCC - since my first noticeable symptoms were the same now as when I was so sick from the cancer. dr was also concerned about recurring cancer (a symptom I hadn't had before - rectal bleeding - added to concern, maybe it'd spread to colon.) so to GI doc for scoping (clear) & to neuro to check out metastasis vs. what other thoughts he might have (MS & some sort of neuropathy for sure.) again I've been cleared for all those now.I told my dr when I first saw her about the nearly blacking out when I stand or turn suddenly & sometimes for no apparent reason. I did not, however, have the tremor issues yet when I saw her. (Oh, by the way, I forgot one weird 'symptom' in my rambling last night. I'm normally a very hard stick when it comes to getting blood or an IV, but for the last month or so the veins in my hands have been very dilated - you could probably hit any vein blindfolded from across the room.)As far as blood work: standard comprehensive metabolic panel w/EGFR - all within range. acetylcholine receptor binding antibody, receptor blocking antibody, & receptor modulating antibody (all to test for myasthenia gravis) - all normal. Sed rate couldn't be performed due to not having a sufficient sample. (They had a hard time getting enough blood because it kept clotting up too fast.) CBC - all normal. ANA screen - negative again (was done twice when I was sick before & was always negative.) TSH w/reflex to FT4 - normal. urinalysis also normal. when I was sick before I had all the bloodtests they could think of - for lyme, rheumatoid arthritis, lupus, 'cancer' (yeah, they actually said 'well, at least we know you don't have cancer!' also for many parasites & such (I've been to quite a few foreign countries - but not since 1993) and for various STDs including HIV & I'm sure I'm forgetting several other things. Again, all normal. My bloodwork was never not normal last time either, no matter how sick I became.
    Anonymous 42789 Replies Flag this Response
  • secondary Addison's. Is you skin changing color?
    rad-skw 1605 Replies Flag this Response
  • Have you been tested for myasthenia gravis? There's a simple antibody blood test that can diagnose this disease. If that shows nothing, there are other tests available, but I believe about 85% of the people with MG have a positive anitibody test result.
    Anonymous 42789 Replies Flag this Response
  • no, skin isn't really changing color. i'm tanning more than i usually do (which has happened before - it seems in certain random years my skin actually decides to tan) - but only on the exposed skin. I have a nice farmer's tan where my uniform doesn't cover.myasthenia gravis testing discussed in my second post.by the way, just for the info - i'm 35.
    armorburro 3 Replies Flag this Response
  • There might be two things here. The pain in your side/ back might be due to the kidney removal. Some of the nerves might have been damaged and if so, you might just have to put up with it. It is possible also that they did some damage to some other organs when they removed it (e.g. spleen), so make sure this is addressed by the doctor. One of the symptom's of Addison's Disease is a low blood pressure on standing (note: not just when standing suddenly). This is easy to have checked. It sound like you might be suffering from this.
    Anonymous 42789 Replies Flag this Response
  • Thanks for the replies by the way. The pain is the same pain I had before they took my kidney out. It's never really gone away. They actually finally did a CT at one point because I kept saying it hadn't changed. CTs have always been normal. Dr finally said it must be scar tissue from the surgery, though he couldn't see anything that would indicate that on the CTs. He also had no response when I asked then how come it's the same pain I had before I had any surgery? Yes, I work in the medical field & I try to be an informed patient, so I know the symptoms of Addison's. Not to put down your reply or anything. I do thank you - and anybody else - for the replies. Adrenal issues are high on my list of suspects, like I said before. Dr has not yet felt inclined to do any testing for it, so I thought I'd ask out here to see what thoughts others had. Maybe see if that would help me try to figure out why she hasn't gone there. And yes, I get dizzy when standing, not just suddenly - although that obviously isn't any fun - but also at times just when turning around or even just standing still. Thanks again
    armorburro 3 Replies Flag this Response
  • No doubt about it. You are having adrenal insufficiency. Take your blood pressure while sitting and then again while standing. If it drops when you stand then you have adrenal problems. If you do know alot about it, then you shouldnt be waiting to do testing. It is a real threat to your life!
    Anonymous 42789 Replies Flag this Response
  • Yes, I'm very aware that Addisonian crisis, if adrenal issues get that far, can potentially be fatal, but it's not that I'm waiting to do testing. I can't force my dr to do the testing & she apparently has other ideas. I know there's an at home cortisol testing kit, but that requires $$. I already had NO $ due to my ex sticking me with heavy debt, the courts deciding for some completely unfathomable reason that I should be the one to pay child support, and her dragging on our custody case to try to run me out of $ so she'll win by default. NOW I just got unexpectedly & quite suddenly (18 hours notice) laid off my job. There is nothing to buy the kit with. I can't even make the copays to see my dr...I already know that I have orthostatic blood pressure issues - one of the reasons I suspect adrenal problems. My dr has been informed of this from the get-go, yet as I said, she apparently felt more strongly that I could possibly be having recurring paraneoplastic syndrome from a metasasis of the RCC or possibly did have MS after all. Thus the neuro work up. Since he cleared me, now she's sending me to a rheumatologist (appt. 7-19)I have no death wish. I've survived way too much already, for which I praise God every day. I'm trying to do everything I can to cut this off at the pass & get a diagnosis so I don't have to end up like I did with the RCC. Unfortunately, drs seem to have minds of their own & frankly I think since I'm only an EMT I can't possibly grasp the complexities involved in diagnosing & so dismiss my thoughts out of hand. Sorry if I offended any docs out there; I'm just putting forth my personal experience. And it doesn't help that I got that previous "it's all in your head" diagnosis. Even though they can clearly see that in fact it was in my left kidney & not my head, I think it puts the shadow of doubt into drs minds that I'm imagining my symptoms or something.
    armorburro 3 Replies Flag this Response
  • chronic fatigue syndrome damages adrenal glands. I was diagnosed a few weeks ago and my doc just did MRI of my adrenals. He is knowledgeable in the realm of CFS and knows how much stress is put on the adrenals. I had been ill for years before I was correctly diagnosed.Find a Bioset or NAET docotr locally. This is the treatment that will help you. Also, take a multivitamin everyday and boost your immune system.Your diet plays a big part. Be conciuos of what you eat/drink.Best to you.MC
    Anonymous 42789 Replies Flag this Response
  • What about "stiffman syndrome" ?
    Anonymous 42789 Replies
    • September 5, 2007
    • 03:43 PM
    • 0
    Flag this Response
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