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Old 01-23-2013, 04:39 PM   #1
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Unhappy Unknown autoimmune, nonspecific symptoms? help please!

Hi, I'm an eighteen-year-old female with a history of minor sickliness. For most of my life, especially as a kid I was a sickly kid- got tired easily, dealt with headaches and insomnia, leg pains, got flus/colds very easily, but I was never diagnosed with anything. My family and I just figured I was a little weaker.

The last seven months of so, I worsened. First I couldn't sleep for very long, and then I started losing more hair, my nails were brittle, I developed itchy patches on my skin- upper thighs, underarms, neck, under the chin. i tried not to scratch but even without wearing anything in those areas it remained itchy. sometimes if I absently scratched it would turn into red-dotted areas- like pin-***** blood spots under the skin, or bleeding out.

I've been exhausted extremely so, to the point where walking to the bathroom made me dizzy. Sometimes I feel like I can't breathe- not in a panicky way, but in almost as if I have a thin sheet over my nose and can't get a lot of oxygen. Heat exacerbates my symptoms- especially the rashes (though even in the winter time they haven't gone away). I'll get hot and dizzy (a headache will come on) and feel like I can't breathe- or need cold air. I thought exhaustion/dizziness might be helped with regular meals, small snacks- fruits vegetables, nuts, and less processed food, but that hasn't helped. I just gained weight (but my thyroid is normal).

My aunt has lupus and I recently tested positive, speckled, with a 1:80 titer.

However, I don't have the common lupus rash, and besides slight joint pain (no inflammation or anything), my rheumatalogist(?) said these were nonspecific items. Every doctor I've seen mentions it might be stress, but I know when I'm stressed and I don't feel anxious or depressed at the moments these problems occur. Sure, a bad grade can ruin my day for a few hours, but I'm not feeling those problems regularly. And then they say "Well you might feel it, but you are it..." which upsets me more, because if nothing else I know what I'm a feeling at any given moment; I'm not a hide-emotions-and-bury-them person.

Anyways, I was just wondering if anyone else has experienced "nonspecific" symptoms and had an autoimmune, even without a lot of symptoms or the high degree? Any answers or opinions are appreciated!

Thanks,
Hazel

 
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Old 01-24-2013, 08:29 AM   #2
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Re: Unknown autoimmune, nonspecific symptoms? help please!

Just a thought, have you had your thyroid levels checked? Were any other autoimmune tests run? Were your vitamin levels checked? Ummm, and what about your SED rate, to check for inflammation?

 
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Old 01-24-2013, 08:53 AM   #3
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Re: Unknown autoimmune, nonspecific symptoms? help please!

Hazel, your symtpoms, in my opinion, are NOT nonspecific, and with a positive ANA at 1:80, I would look for another rheumatologist. You have hair loss, rashes, joint pain (an 18 year should not have any joint pain, whether severe or not), exhaustion, heat intolerance, etc, all of which are common symptoms in lupus. I would ask for a thorough workup looking for any other evidence of autoimmune markers, and get a skin biopsy from one of your rashes by a dermatologist, including immunofluorescent studies, as some diagnoses come from biopsies. Repeating the ANA would be helpful too, as levels can fluctuate. Your Dr seems to be dismissing your complaints. The sooner you get a diagnosis, the sooner you can be treated and feel better. Good luck.

 
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Old 01-24-2013, 08:58 AM   #4
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Re: Unknown autoimmune, nonspecific symptoms? help please!

Hazel, hi & welcome. I had problems that didn't fall into place for decades, then was diagnosed with lupus. But don't be overly alarmed, as you're YOU, and everyone's diagnosis is his/her own only. Anyway... you could familarize yourself with some basic info about autoimmunes, also review your "basics" and "all other".

ANA in autoimmunes. ANA can be positive simply due to a passing virus or infection, also due to familial tendency. I believe 1:80 is considered very low, so doesn't set off alarm bells where no "telling" symptoms are present.

Lupus. Fortunately it's not "inherited" per se. For the basics, you could read the "sticky posts" (permanent info posts) on the lupus board (diagnostic criteria, alternative criteria, symptoms/labs, skin, and reading resources).

Thyroid. I think you're right that thyroid can cause a lot of what you list. But I believe hypothyroidism can come on gradually, forcing many people to be tested repeatedly before the diagnosis can be made. (It took one of my friends 1.5 years.)

Dry skin. I think there are a lot of causes. Have you seen a dermatologist? (I used to battle this every winter & often needed steroid shots to make it stop. I now apply lotion post-shower, use soaps for sensitive skin & dye-free detergent, etc. And wool has always irritated my skin wildly.)

"Basics". By basics I mean basic bloodwork & urinalysis. Have you had these done recently, and did you get copies?

"All other". Mono, flu, Lyme... all sorts of things are possible, unfortunately.

Returning to your original question about "non-specific" problems. My problems were probably more indicative than I realized. Antibiotics gave me convulsions as a child. I reacted wildly to insect bites. A widespread bullous (weepy blistery) rash as a kid. At 13, a year of wicked pain, low-grade fever, elevated ESR, and depressed WBC. Over the years, more stuff (migraines, hair loss, anemia, GI misery, aberrant periods). Last symptoms, an episodic rash that was finally diagnosed by deep-punch biopsy as lupus-specific.

I hope this is more or less what you were after, that others add more, and that you post again soon. I'll say bye for now, with best wishes, Vee

 
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Old 01-25-2013, 11:05 PM   #5
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Re: Unknown autoimmune, nonspecific symptoms? help please!

Quote:
Originally Posted by luca689 View Post
Just a thought, have you had your thyroid levels checked? Were any other autoimmune tests run? Were your vitamin levels checked? Ummm, and what about your SED rate, to check for inflammation?
Thyroid was fine, and we're going to run some other tests for autoimmune and vitamin d levels. I don't know what the SED rate is?

Thank you in general for everyone who replied! I appreciate the feedback!

 
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Old 01-26-2013, 01:16 AM   #6
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Re: Unknown autoimmune, nonspecific symptoms? help please!

Sed rate is usually abbreviated "ESR" on your labs. It's a marker for inflammation. It's not specific to a single condition, meaning can elevate in a number of conditions.

Autoantibodies can rise & fall---including the very general ANA test---so timing of bloodwork can matter. In fact, many people have AI tests done repeatedly before getting useful findings. Also, if some condition is present but is mild, that can prolong the test phase.

Let us know how you're doing & how your upcoming tests turn out.
Good luck! Vee

 
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Old 01-26-2013, 10:35 PM   #7
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Re: Unknown autoimmune, nonspecific symptoms? help please!

Quote:
Originally Posted by hflores View Post
Hi, I'm an eighteen-year-old female with a history of minor sickliness. For most of my life, especially as a kid I was a sickly kid- got tired easily, dealt with headaches and insomnia, leg pains, got flus/colds very easily, but I was never diagnosed with anything. My family and I just figured I was a little weaker.

The last seven months of so, I worsened. First I couldn't sleep for very long, and then I started losing more hair, my nails were brittle, I developed itchy patches on my skin- upper thighs, underarms, neck, under the chin. i tried not to scratch but even without wearing anything in those areas it remained itchy. sometimes if I absently scratched it would turn into red-dotted areas- like pin-***** blood spots under the skin, or bleeding out.

I've been exhausted extremely so, to the point where walking to the bathroom made me dizzy. Sometimes I feel like I can't breathe- not in a panicky way, but in almost as if I have a thin sheet over my nose and can't get a lot of oxygen. Heat exacerbates my symptoms- especially the rashes (though even in the winter time they haven't gone away). I'll get hot and dizzy (a headache will come on) and feel like I can't breathe- or need cold air. I thought exhaustion/dizziness might be helped with regular meals, small snacks- fruits vegetables, nuts, and less processed food, but that hasn't helped. I just gained weight (but my thyroid is normal).

My aunt has lupus and I recently tested positive, speckled, with a 1:80 titer.

However, I don't have the common lupus rash, and besides slight joint pain (no inflammation or anything), my rheumatalogist(?) said these were nonspecific items. Every doctor I've seen mentions it might be stress, but I know when I'm stressed and I don't feel anxious or depressed at the moments these problems occur. Sure, a bad grade can ruin my day for a few hours, but I'm not feeling those problems regularly. And then they say "Well you might feel it, but you are it..." which upsets me more, because if nothing else I know what I'm a feeling at any given moment; I'm not a hide-emotions-and-bury-them person.

Anyways, I was just wondering if anyone else has experienced "nonspecific" symptoms and had an autoimmune, even without a lot of symptoms or the high degree? Any answers or opinions are appreciated!

Thanks,
Hazel
Answer would be yes. I was originally diagnosed with UCTD. Then Fibromyalgia. Now it may be MCTD but I don't have an official diagnosis. Cannot function without medication that treats autoimmune disease. Normal ESR, normal blood work except my vit levels. Very hard to get a doctor to take you serious when that stuff is normal. My ANA is high like 1:640, and I had antigens RNP.

A lot of muscle pain. Some joint pain. No swelling. No rashes. Severe fatigue that made me unable to function. Can't get rid of the fatigue. Sleeping problems. Headaches, back pain. Tingling all over. Can't go into everything.. I guess I have a mild form of it. But it just doesn't feel that way.

Don't ever let a doctor tell you it's just stress when your feeling that bad. I've been there, and I didn't appreciate it one bit. Best bet is to find a doctor that believes you when you say your sick, not one that is going to act like it's some kind of joke.

Last edited by neveragain444; 01-26-2013 at 10:38 PM.

 
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Old 01-27-2013, 05:32 PM   #8
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Re: Unknown autoimmune, nonspecific symptoms? help please!

I have had those symptoms you describe. I have Graves disease and the symptoms you describe are similar to what i experienced when i was hyperthyroid. But, i also have Mixed Connective Tissue Disease. I have not had those symptoms since my throid was destroyed with radiation. My thyroid tested fine for quite some time even with the symptoms before it showed out of normal range

 
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Old 02-01-2013, 11:19 PM   #9
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Re: Unknown autoimmune, nonspecific symptoms? help please!

I had more bloodwork done, and they did urine samples, for protein, glucose, and pretty much everything else I'm sure, which all came back negative, as well as the complacent c, and something silica? The only thing that came back "high" (37.5) was the Lupus Anticoagulant Sensitive APTT, BUT the Lupus Anticoagulant Index came back at .8, which is still normal, I think.

Does this mean I don't have Lupus? Or any autoimmune? Help!

 
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Old 02-02-2013, 03:39 PM   #10
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Re: Unknown autoimmune, nonspecific symptoms? help please!

The lupus anticoagulant test (you had the sensitive test which is good) is a test for antibodies in the blood that predispose people to blood clots. These antibodies are often found in people with lupus, but also in people without lupus. It is considered an autoimmune disorder. If you have had any previous episodes of blood clots or fetal loss, particularly second or third trimester, you would normally be put on anticoagulant therapy. If you have never had a blood clot, you may be advised to take baby aspirin each day for clot prevention. I would discuss these results with your Dr. and see what he/she recommends. This problem causes no symptoms other than blood clots, so the cause of your symptoms still needs to be determined.

 
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Old 02-12-2013, 02:50 PM   #11
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Re: Unknown autoimmune, nonspecific symptoms? help please!

I don't see my rheumatalogist until march so I've been trying to figure some of this stuff out by myself. Here's what was tested:

Urine Ketones Negative
Urine Leukocyte Esterase Negative
Urine Nitrate Negative
Complement C4 17.8 (Neg)
Urine Urobilinogen 0.2
Urine Bilirubin Negative
Urine Blood Negative
Lupus Anticoagulant Sensitive APTT 37.5 (high)
Urine Protein Negative
Urine Glucose (UA) Negative
Total Creatine Kinase 54 U/L (negative)
Lupus Anticoagulant Index 0.8
Complement C3 98.0 (negative)
Urine Specific Gravity 1.002 (low, range was: 1.003-1.030)
Normalized Silica Clot Time Ratio 0.78
Urine pH 7.5

The bold are the ones that didn't have a range next to them.

If I scored negative on all these tests that means I don't have lupus right? Confused.

 
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Old 02-13-2013, 05:19 AM   #12
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Re: Unknown autoimmune, nonspecific symptoms? help please!

Hi. I'm just a patient, of course, but I suspect these tests don't "absolutely" rule out lupus or antiphospholipid syndrome, but that's ONLY a dumb guess on my part, based on at least one value (APTT) appearing to be elevated. While that single elevation may not be enough to diagnose anything yet, it may point to the need for future retesting... What I'd want my doctor to state very clearly: what should happen next (like follow-ups).

Frustrating, yes... but, alas, being in limbo is common in the world of autoimmunity. Most important thing is not to lose faith: please keep trying & stay on top of any new or worsening symptoms. And let us know what happens next & how you're doing, OK? Sending hugs, Vee

 
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Old 02-13-2013, 09:35 AM   #13
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Re: Unknown autoimmune, nonspecific symptoms? help please!

Hazel, the elevated lupus anticoagulant plus positive ANA are two of the criteria on the list of 11 for a diagnosis of lupus. One generally needs 4 out of 11 (or more) to meet the criteria for a diagnosis. You can review the sticky notes on the lupus board to find the others. I wish your Dr would have repeated the ANA, as they do fluctuate over time. He also could have ordered sed rate, CRP, anti-DS-Dna and several others, but I'm sure the rheum will do that. Hang in there- I think you will have some answers soon.

 
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Old 04-06-2013, 10:07 AM   #14
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Re: Unknown autoimmune, nonspecific symptoms? help please!

Hi. There are many of us that are undifferentiated. Frustrating yes because dr's. don't quite know how to treat us. It is not all in your head. My dr. Explained that they are still learning about these autoimmune issues. He said picture a chart red at one end green at the other. Green being massive flare and likely bad blood tests. With undifferentiated even from moment to moment you can fluctuate. I have antiphospholipid antibody syndrome which comes with raynauds and livido reticularis. Fibromyalgia almost everyone with autoimmune disease seems to get by default at some point in their disease, it just all gets lumped in. The thing with undifferentiated is, it is specific to how your body reacts to the attack from your own immune system. There may be no one else that presents symptoms the same way. Mine move around my body, one day my knee doesn't work, next it's the other leg etc. I always load up on lotion after shower and before bed...always. I limit showers to twice a week. I always use biotene, and eye drops. Good luck.

 
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Old 04-08-2013, 07:43 AM   #15
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Re: Unknown autoimmune, nonspecific symptoms? help please!

I think the fibromyalgia diagnoses being handed out so quickly are clouding up the issues of having an autoimmune disease. Fibro is a syndrome, not a disease in that, while it may make you feel awful, it will not kill you or destroy organs, although as more research is done, that may change.I don't mean to minimize what the suffering of afflicted patients but I do think many Dr's don't recognize that pain is often part of autoimmune diseases and tend to just ignore that. Part of it also lies in us patients ourselves as we want a reason why we feel so crappy and a medicine to make it go away so Dr's tell us what we want to hear rather than "well, it sucks to be you because there isn't much we can do except treat the symptoms as they come". I don't think anyone wants to hear that last statement so Dr's do the best they can to make their patients feel better. Undifferentiated autoimmune disease has it's own diagnostic criteria as well and can be treated. I also can affirm that for certain AI diseases, ANA levels do NOT appear to be indicative of a flare, such as systemic scleroderma. In other cases, such as with lupus, it can. In yet other cases, such as seronegative lupus and whatnot, labs may not show much of anything, unless something very specific is looked for and that is not in the usual range of autoimmune tests done. It makes Dr's jobs even harder when, as you say Craftymama, that symptoms do change from day to day, and many of them are naturally part of the aging process, such as dry eye, or mimic something else. I thought that lupus was called the great imitator. It is a wonder that anyone wants to go into rheumatology at all, but I am very thankful that they do. Just as a disclosure, I don't have lupus or fibro, but rather limited systemic sclero, APS, secondary Sjogren's plus a few other things, so I am only a patient and an opinionated one at that, lol. Maybe someone else can add their two cents, too!

 
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