Help! I feel exhausted, achy, brain fog, and clumsy but my tests keep coming back normal! 18 y/o female

I had an MRI no contrast of the brain and it came back normal. I had an ANA, creatinine, TSH, T4, and Ra blood tests. They all came back normal!!

I'm yawning all the time and need naps throughout the day, my hair is falling out all the time, I keep dropping things, I can't handle written or verbal instructions, I keep making grammatical, stylistic, or vocabulary mistakes and can't spot them. It's so hard to read or write. I used to sing a lot (classical style), and my range got all the way to the G above High C. I was getting really good!! Now, I can't even practice! My range has shrunk, my voice sounds like a kitchen garbage disposal system.

I'd make mistakes when I talk, like mixing up words, forgetting words, not saying what I mean, etc.. I can't understand what people are telling me if they're talking in long sentences. Literally, I'm sometimes stuck with only being able to understand one-part instructions. I have a 145 IQ, straight A student, 1450/1600 SAT score.

While I took my SAT, I lost the ability to read instructions; I made mistakes like writing 33.3 on the math grid-in instead of 3.33 or .333, I didn't understand what the math questions were asking about!

When I got home from the SAT test, I peed my pants and got pee all over my shoes, the floor, and my socks. I'm confused much of the time when I have these flares, but then I'll be perfect for a few days.

My legal guardian and psychiatrist keep saying "Oh, it's stress!" But this has been going on since before June of 2016! It's NOT stress, but it could be triggered by stress!

I get muscle pains and joint pains. The joint pains switch from joint to joint. For example, one day it's my knees, then it's my right hip joint, then my knuckles, then my finger joints, then my elbows... My biceps/triceps feel like they're burning sometimes to the point when I can't even wash my own hair and my legs burn to the point where I feel like I can't stand up.

What's wrong with me!? I was going to apply to a conservatory during my freshman year of college, take lots of literature and history courses, and go hiking or bicycling! Now.... I honestly debated whether I should apply to colleges!

My genetic test says I have a 1.25x higher risk of developing Lupus or Scleroderma(?) I think that's what the second disease is.

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  • Might be worth having a pernicious anemia test. I feel your frustration, I have same symptoms but no results yet have diagnosed anything. Don't give up 😊

  • Hi RobinsonF. Sorry you're having such a time of it. Obviously, we can only help based on our experiences...

    Did they run the full panel of auto antibody tests or only what you listed? Usually, a connective tissue disease will show up in your tests, but some are seronegative. Otherwise, your doctor may want to consider Fibromyalgia. I have a combination of FMS and MCTD and it can be difficult to determine which is which.

    If you have any cutaneous symptoms, a biopsy may help shed some light. Finally, it is worth noting that some people experience a preclinical period where they get all the symptoms but nothing shows up in their blood work. I went through more than a decade of this - it always put it down to anemia and a Vit D deficiency, until a positive ANA and Chromatin result last year. In fact, it only became unarguably clear when I responded to a Plaquenil trial.

    I do hope you get some answers and relief soon.

  • They only did what was listed. Can they still diagnose you if nothing shows up on the blood work? My CBC was done recently and it was normal too. I take Vitamin D3 tablets daily.

  • It would be very irresponsible to diagnose without further testing.

    Glad to read you are scheduled to see a rheumatologist. I would imagine they will request ESR, anti-smith, dsDNA, SSA/SSB, RNP, ACL and centromere antibodies (read up :) ) at a minimum; those cover the majority of conditions.

    An ultrasound to look for inflammation in your joints, and a throat culture, because of your voice, may be good ideas too.

    Take a list of symptoms - you'd be surprised at how much info can evaporate, even on a good day. And don't be afraid to ask questions and make suggestions. I think one thing we have in common on here is we've all had to fight our corner at some point.

    Okay, I guess that's enough for now. Keep your chin up!

  • Hi. Sorry to hear you are having such problems. Hopefully a thorough rheumatologist can run more tests and give you a diagnosis.

    We know our bodies and we "feel" when something is wrong and not just stress, so please don't stop until you get diagnosis and treatment.

    Unfortunately your symptoms are common to a number of diseases, that is why they need to find something abnormal in your blood to give you a diagnosis.

    For example: fatigue and coarse voice happens to us with hypothyroidism (also in Hashimoto's) but your T4 and TSH levels are normal .... fatigue due to anemia would show in CBC but yours is normal.

    That burnig in your muscles is a symptom for multiple sclerosis or antophispholid syndrome, a cause could be nerve inflammation ... MS is diagnosed using MRI with contrast, APS with bloodwork. I'm not sure if it happens in lupus, I have lupus but don't feel that, maybe others would tell?

    I'm sure a rheumatologist would run more tests to check if you have inflammation (C reactive protein, ESR) or more antibody tests other than ANA.

    Don't be afraid to ask your Dr to consider Autoimmune Disease and Connective Tissue Disorders and explain to you why he thinks is not this or that disease.

    "Please I need your help because I'm not having the same quality of life than before" is a good line :) feel free to use it or change it.

    Keep records or a journal of your symptoms, the pain scale is useful, my rheumy has me drawing every appointment.

    Best luck! We are here for you, you are not alone.

    Samantha

    wongbakerfaces.org/instruct...

  • Just the same happened to me. the blood work shows nothing; but I respond to hydroxychloroquine.

  • Did they do a sleep study?

  • The sleep study's scheduled for January 21st, and I see a rheumatologist on February 1st. I just wish I could do all of these things sooner ):

  • The wait for a Rhuemy is always bad but use the time wisely, make sure you do a symptom diary it will help you so much as they ask a million questions and I found it impossible to remember when things started, what time of day they are worse etc! X

  • You say your tsh and t4 were 'normal' - do you know the actual values?

  • No, but I've been seeing a pediatric endocrinologist for years for hypothyroidism

  • Are you able to obtain all your thyroid results from the doctors? You have the right to them under the Data Protection Act. When you do post them on the thyroid uk part of this forum and ask for opinion, alongside your symptoms.

    The ranges used (tsh, ft4, ft3) as 'normal' are just statistical values which resulted from testing a very small sample of the population, including people with thyroid conditions. They are just a representation of the distribution of results in the population, which was tested (not just 'healthy' people, either!). They should not be interpreted as meaning that one person is well whether the results are at the bottom or top of the ranges.

    It takes a long time to get diagnosed as doctors interpret blood results falling within the ranges as meaning 'healthy'. Hypothyroidism can lead to a range of symptoms as the thyroid hormone receptors are in every cell of the body. I have been hypo for over 20 years and for about 10 I've been convinced of it despite the tests coming back as normal. I waited a very long time to get diagnosed due to the blood testing ranges. I recognise quite a few of the symptoms you described, including the verbal reasoning, mixing up of words and not being able to express your thoughts, which I put down to the brain fog I've had.

  • Most of my tests have come back as normal - not all, but I have now found out I have a candida problem. This was found in my nail clippings, but I suspect it is in my body, too. There are many fungal and bacterial invaders that can cause havoc in our bodies, but the conventional system is very slow at testing for those other than the routine, I have found.

    I have suffered so many terrible symptoms like you describe from brain fog to joint pain, rashes to hair loss and I have been researching and helping myself for 16 years. At last an astute GP had tests for candida done.

  • Hi. Just wanted to mention that being overrun by yeast can also be a symptom of immunosuppression, as the body is unable to regulate flora levels...

  • How can this be managed or is it not possible? Perhaps that is why my diet is so strange!

  • If the underlying cause can't be found, then usually, the diet has to be manipulated. Some experts suggest cutting out food groups - no dairy for month, then no gluten, no red meat, no nightshade foods, etc. But you have to do each one long enough as it usually takes a couple of weeks to feel any differences.

    In my case, daily aloe vera juice helped to calm my system. Also found out about organic wheatgrass powder recently. It's supposed to be a superfood that helps draw toxins, so I'll be trying that.

  • I eat no gluten, red meat, no nightshades apart from the odd tomato and piece of potato now and again after reintroducing after years of exclusion. I do eat an egg now and again, too, because I get hungry and like to be active. I wonder if the toxins are coming out of the skin and nails as it can take years if very toxic I suspect.

  • I can relate to you in almost everything you've listed! I turned 20 recently and feel like I'm 90! Seeing the Rhuematologist was so far the best thing that's happened in the timeline of my healthcare. I've been sent away but numerous Dr's both during appointments and in hospital. Thankfully they finally found abnormalities in my tests and decided to refer me after fobbing me off for the best part of two years.

    I was referred only because I kept insisting that something was very wrong and I actually booked an appointment with my GP, sat down and said look I think I've got lupus these are my symptoms please test me for it.

    I was referred only because I had very raised antipholosiphid antiobdodies over the course of 4 months and low white blood cells

    Just from my first appointment with the Rhuemy she found a few things including possible blood clots and pleurisy which I'm having scans for.

    Please please please don't give up. Contrary to what everyone believes It's not about the actual diagnosis - naming it won't actually help you, it's about finding out what's going on and treating the symptoms so that you feel better!

    Sending lots of love x

  • I am on an off aNA negative; I think sometimes the blood markers just do not show, even when there is active disease.

  • I have been sero negative for nearly 30 years yet have very typical lupus with some added extras too. It's not usual but nor is it impossible. It takes longer to get a diagnosis & it's very important that you get the right diagnosis. There are many conditions that could give rise to your symptoms. I wish you the best of luck at your forthcoming appointments. Clare x

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