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Old 04-24-2013, 11:22 AM   #1
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No Dx - many, many negative tests

I've had a chronic issue all of my life which are progressive, but the last few years, I was having chronic flu-like symptoms such a blistering headache, chills, sweats, and muscle/joint pain. I've also had a host of psychiatric issues such as anxiety, memory, and cognitive problems. High blood pressure runs in my family, but it goes out of control whenever I'm having problems.

The only thing that worked for me is a very strict grain-free, plant based diet with moderated intake of seeds and nuts. Wheat, in particular, will really set me off. I've seen neurologists and rheumatologists and everything comes back negative.

I've gotten to the point where I've just given up on Doctors, but I really would like to come up with a diagnosis and potential treatment plan. The last bought was bad enough where I should have been on disability, but that's hard to do without a diagnosis. At 49, I'm a bit young to retire if I'm unable to work.

Any ideas? So far, my diet is holding except when I cheat.

 
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Old 04-25-2013, 12:55 AM   #2
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Wow. I'm in the same boat and have just about given up on doctors myself. Dozens of negative tests for me outside of hypothyroidism and secondary hypogonadism. Nothing has proven my repeated bouts of debilitating fatigue, dizziness, and mental fog are autoimmune. But.... I just happened to have some seasonal allergy issues around the same time as a fatigue bout. A doc gave me prednisone thinking it would help me breathe better. But it ended up resolving my fatigue issues completely. Does this assist in proving this is an autoimmune issue? Have you had any experience with immune suppressing drugs?

 
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Old 04-25-2013, 02:00 AM   #3
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Re: No Dx - many, many negative tests

First, I would get copies of all your test results from both specialists. Many Drs wil ignore what they consider borderline test results, when they are, in fact, abnormal, especially meaningful if combined with certain symptoms. They tell patients test results are fine, when they are not. So that can help you find clues, as abnormal labs are marked hi or low, or otherwise described. Autoimmune diseases seem to be associated with gluten intolerance in some people. Were you ever tested for celiac disease? You might want to visit the lupus board and read up on the sticky notes the criteria (symptoms) for diagnosis. 4-5% of lupus patients have negative ANAs, so it it possible to have it with normal test results. There are many other clues that can show up on blood and urine tests that are suggestive, like low white blood counts, or blood or protein in urine. You can post test results here if you have them for comment to get help with this. I would pursue a diagnosis, and perhaps seek a second rheum opinion, so you can get treated and feel better. Good luck-I hope you finally get some answers. The predicament you are experiencing is unfortunately very common. Response to Prednisone is sometimes used as a diagnostic tool when all other things fail to show anything. It doesn't give a specific diagnosis, but hints at autoimmune disease if Prednisone resolves the symptoms.

Last edited by ladybud; 04-25-2013 at 02:05 AM. Reason: added

 
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Old 04-27-2013, 02:46 AM   #4
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Re: No Dx - many, many negative tests

Hi and welcome. First, I fully agree with the other responses. Because of your citing wheat, Celiac came to my mind, too. BTW, I think Celiac can exist "standalone" or in conjunction with other conditions, and that it can hit at any stage of life.

Ladybug mentioned a rare presentation of lupus, which is the one I ended up being diagnosed with. I tried for years locally before I had the sense to ramp up to a metro teaching hospital. So that's another possibility, if you haven't tried it yet: because of the law of large numbers, teaching hospitals see conditions in all their infinite variety, incl. rare presentations.

Another thought. There is a "subset" of lupus called Drug-Induced Lupus Erythematosus, abbreviated DILE. As its name suggests, it's a form of lupus that's triggered by prescription drugs. Some very common drugs have been implicated, including heart & BP meds, cholesterol meds, anti-anxiety and antidepressants, etc. Symptoms are similar to those seen in systemic lupus (SLE) but tend NOT to include major organs (kidneys and the like). The treatment is simply to identify and discontinue the offending drug(s). In DILE, I think ANA is positive---and the ANA "subtypes" that are almost always positive are anti-single-stranded-DNA and anti-histone.

Do you take prescription drugs? If so, per above, DILE might be a possibility. Or you could simply be experiencing severe side effects that fall short of DILE. My SIL had such terrible muscle inflammation after starting a cholesterol med that she saw a rheumatologist, who promptly evaluated her, among other things, for lupus---both the SLE and DILE forms---and for myositis. He wasn't sure, so he prescribed a massive dose* of Prednisone that harmed her (stomach bleeding, ER, hospitalized). The ultimate solution was just to discontinue the cholesterol med.

* I think the dose when Prednisone is prescribed as a "steroid challenge" is usually much lower. Maybe someone here can provide the typical dose?

As for sweats & the like, could some symptoms be due to perimenopause? But that wouldn't mean NOTHING ELSE is going on. Lupus (for one) loves fluctuating hormones, so some women get a double-hit during perimenopause, meaning lupus flares plus menopause symptoms. Anyway, glad you found us & hope you post more soon. Sending warm wishes, Vee

 
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Old 04-29-2013, 08:40 AM   #5
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Re: No Dx - many, many negative tests

Thanks for the response. My working assumption is that I *do* have Lupus. I remember reading one self-portrayal of the cognitive and sleep issues and thought that I could have written it myself. The problem with a diagnosis is that with my grain-free vegan diet and near obsessive exercise schedule, that I present as a very robust 49 year old male. My protestations that something is wrong with me fall on deaf ears.

My allergies have subsided and I've shored up my diet again, so I'm doing well again.

I haven't tried any immune suppressants. So far, manipulating my diet appears to work remarkably well, but if I get another flair up that doesn't respond to my diet, than I plan to turn into a huge PITA until I get access to some of these drugs.

I'll read the stickies over on the Lupus board. Thanks again.

 
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Old 04-29-2013, 10:27 AM   #6
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Re: No Dx - many, many negative tests

Just to provide a little more info for you: Prednisone challenges as a diagnostic aid are usually in the 10-20mg/day range, enough to make a difference, without overdoing it and causing side effects on a short term basis. You can ask for that if you see a Dr again but do the labs first as Prednisone will suppress some of the lab elevations that would be helpful in getting an answer. Another thing or two to watch for: your response to sun exposure, which will typically cause rashes or downright flares of systemic symptoms, and foamy urine, which is a sign of protein in urine. Anytime you feel feverish, like after chills, take your temperature and document it. Many lupus patients run low grade fevers that get unnoticed without a thermometer. Not to scare you, but men tend to get worse disease with lupus than women, more organ involvement, etc. So any new or worsening symptoms should be checked out and taken seriously. During bad muscle ache times, it is good to get a CK muscle enzyme test run, without strenuous exercise for a couple of days prior. Lupus can cause a myositis, inflammation of muscle and breakdown, releasing CK and aldolase enzymes. You might even consider going to Mayo clinic if you decide to actively pursue this. Most cases can be diagnosed locally if you can find a thorough rheum who believes you. I would go armed with a list of symptoms and a list of how your quality of life, ability to work is affected to convince your Dr and get past your healthy appearance.

 
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Old 04-29-2013, 11:22 AM   #7
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Re: No Dx - many, many negative tests

You're right, I should work on list of symptoms and journal. I've been in such crisis mode the last few years that I really haven't had time to put together a coherent strategy. It took me about a year to work out my diet, and I've been improving my leaps and bounds. However, it may be time to "take stock" and strategize.

And, I agree that this is serious business with serious consequences. I'll look into Mayo and I just heard that I'll be working close to Ann Arbor MI (University Hospital) for the next two years.

 
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Old 04-29-2013, 03:33 PM   #8
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Re: No Dx - many, many negative tests

Hi. My 2nd (and permanent) rheumatologist had me fax in a lifetime medical history, in my own words. I kept it to a single page because doctors love brevity, by using sentence fragments, bulleted lists, etc. First section was early life, which I kept short. Next section, the more recent stuff, I grouped by symptom (rashes, headaches, pain/fatigue, GI, urinary, etc.), adding dates & brief descriptive info. It was a challenge reducing everything to one page but worth the effort.

I also faxed recent labs, biopsies, etc. He could see abnormal values, also what tests *hadn't* been run.

Believe it or not, Celiac really can cause some of the symptoms you cited. Have you read up on it? It can co-exist with other conditions...

I hope you keep pushing forward. Even if you don't get answers immediately (many of us don't), it would be a coup just to find a doctor who inspires confidence, someone you sense will get you answers. Good luck, Vee

 
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Old 04-29-2013, 05:12 PM   #9
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Re: No Dx - many, many negative tests

Quote:
Originally Posted by VeeJ View Post
Believe it or not, Celiac really can cause some of the symptoms you cited. Have you read up on it? It can co-exist with other conditions...
Apologies, I forgot to reply to your mention of Celiac. It's certainly possible. However, my understanding is that after I stop eating gluten foods for 6 months the test is no longer valid. As contact with wheat will drive my blood pressure and anxiety in to the stratosphere for several days, I'm not about to start eating it again. I also get tremors and vision problems when I come in contact which take weeks to go away.

There is a notion of a "leaky gut" which I've yet to across any documented proof, but basically what you eat is able to cross the blood boundary and sets off the immune system. I've avoided Pork and whey protein all my life because of what I know understand is an immune response. It's possible that undiagnosised cialic for 30+ years has damaged my GI which is triggering my current issues.

It's just a big fat maybe at this point. If you have more information, I'm interested.

Just some banal asides:

When I was 19, I had my first serious bought with GI trouble. They did an endoscope on both ends and took a biopsy. Diagnosis was that it was "very inflamed", but they didn't recommend anything further other than avoiding spicy foods.

I naturally avoided wheat all my life as I preferred rice dishes (which my mother hated, so it was an odd choice). My ex-wife had an obsession with putting bread crumbs into everything. Now that I think of it, she did have a wart on her nose and an evil cackle when took out the bread crumbs.

Okay, you're giving me hope to try again.

 
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Old 04-29-2013, 05:49 PM   #10
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Re: No Dx - many, many negative tests

Virtual, I had GI problems for over 20 years---'twas horrible---so I hear you. I think you're right about Celiac testing being essentially useless after being gluten-free for awhile. As for "leaky gut", I've only read what the straight-medical community says, which is, there is no proof; but if I see anything new & interesting, I'll certainly share.

Now that you're basically wheat-free, I'm not sure what problems remain? Whatever's left, you could also discuss, if you want to, with people on the Celiac board, if you're curious how others there feel after ditching wheat.

You definitely should try again. Only upside, nothing to lose.

Funny thought you had about those bread crumbs! Take good care, Vee

 
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Old 04-30-2013, 08:29 AM   #11
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Re: No Dx - many, many negative tests

Virtual, you mentioned you avoid whey protein, and many gluten intolerant people are also dairy intolerant. Since you are preferring to work with diet, have you tried eliminating all dairy products? The soy, rice and almond milks are good. Leaky gut syndrome tends to correct itself after allergenic foods are removed from diet, and 6 months of gluten free is often adequate if that is the only offending food. I like Vee's idea of a single page concise lifetime medical history summarizing the important points. Anything more than a page will get glossed over at best. Bullet points and brevity are key to getting it read. Keep us posted.

 
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Old 04-30-2013, 09:00 AM   #12
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Re: No Dx - many, many negative tests

Quote:
Originally Posted by ladybud View Post
Since you are preferring to work with diet, have you tried eliminating all dairy products?
Oh yes, I'm vegan for good reason. The last time I had cheese (good as it was), I felt like somebody beat me with a rubber hose as my muscles were so sore that I could hardly move. I occasionally have some shell-fish (mussels, oysters, etc.), but that's as non-vegan as I can go these days. It seems that foods that I didn't have as a child are best, and I also need to avoid foods with high silicate content (almonds).

It's a good thing that I lived with vegetarians in college and love to cook.

You *****ed a nerve with 'preferring to work with diet'. It's not so much that I prefer to work with diet as I've tried everything from doctors to Eastern herbal medicine to reflexology. About 10 months ago, I was in so much pain and misery that if I had cancer I would have thrown the towel in and gratefully succumbed. It's just that diet, exercise, Yoga, and meditation appears to be the only thing that works.

I'm actually grateful for all of this as it's made me a better person. I often quipped that anxiety was my best friend as my other friends might leave me, but I know my anxiety never would. It's defined me and made me who I am.

I do suspect that either a immuno-suppressant or a steroid would work for me, and although I don't currently need them, it would be nice to know it's available if another flare occurred. As I'm in pretty rough emotional shape when I'm under duress, I should be prepared.

 
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Old 04-30-2013, 01:01 PM   #13
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Re: No Dx - many, many negative tests

So sorry, I know your preference would be to find out what is wrong and have an actual diagnosis to treat! I should have said it a different way. Have you taken non-steroidal antiinflammatories during your flares? I think naproxen works well and is OTC. You can get higher doses of it with a RX, but it works pretty well if taken on regular basis, twice a day, until flare subsides. Take with food to protect stomach.

 
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Old 04-30-2013, 01:12 PM   #14
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Re: No Dx - many, many negative tests

I know you've been tested before for autoimmune disease, but I believe you should be retested periodically, at least yearly and during a flare is most likely when something will show up. I had symptoms of lupus for 10 years, thought I had it all that time, but tests came back negative. Very frustrating as you well know. After 10 years, my ANA finally turned positive, as well as anti DS DNA, so I finally got confirmation. So I would keep testing with flares, and consider also getting a newer, more sensitive test called AVISE SLE, which you can order from the manufacturer and take to your Dr for an order, and take to lab. The test kit doesn't expire, so you can order it, keep it on hand, and use it when next flare comes around.

 
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Old 04-30-2013, 01:48 PM   #15
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Re: No Dx - many, many negative tests

Virtual, I just reread the whole thread. In an early post, you said that you saw in yourself certain aspects of lupus. Have you checked out the lupus board, esp. the "sticky post" (permanent info post) that contains the formal diagnostic criteria for SLE?

Also, if you take prescription drugs, looked into which meds have been implicated in DILE (drug-induced lupus)?

You didn't say which types of specialists you've seen, or how recently (and you surely don't have to). Having had GI problems for 20+ years, devastating at times, plus pain, fatigue, headaches, etc., I'd have thought I had a GI disease, despite a godawful number of invasive GI tests that found nothing. Mine Dx was lupus*. My sis, with a different set of GI problems, was Dx'ed with Hashimoto's. A good friend, also with GI problems, is still seeking answers. So I think if I were in your shoes, I'd study the lupus diagnostic criteria but not mentally rule out other "ologies" too soon, because so many symptoms can overlap.

Since you're vegan, do you take supplements like B-12, Iron, Calcium, Vitamin D, etc.? I know vegans, including one in my family, who became deficient in some things. My B-12 tanked when my lupus was on the rise, and I had neuro-like tingling, anxiety, sleeplessness despite being very fatigued, etc. A footnote on one of my lab reports stated that low B-12 and Folate deficiency can cause "unexplained neuropsychiatric or hematologic problems". Bye, Vee

* I should list all my misdiagnoses, but that would run on forever. One actually struck me as possible---Lyme---but multiple tests were negative. Are you in a Lyme belt? I don't even think you have to be, these days, to be exposed. Anyway, hope you can make something happen!

Last edited by VeeJ; 04-30-2013 at 02:30 PM. Reason: typo

 
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