Doctors don't know what I have, my symptoms keep getting worse, what should I do?

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I'm a 20 year old woman. I have been sick for a month now. I am looking for help here because I don't see the end of this. I know internet is not the place to get diagnosed, but I have seen every doctor and health professional and no one seems to understand what's wrong with me.

It all started a month ago when I suddenly felt like I was about to faint. Except that I did not actually faint, just this constant feeling of pre-fainting, for about 5 hours. Head spinning, body feeling weird and shaky, disgusted by food, overwhelmed by every sound,... Very weird really.

Since then, I feel like this almost every day.

My left side started feeling really weird, like weak, tingling in my fingers and leg.

Then my left leg started to hurt, for about two weeks, and it recently has spread to my right leg. All the muscles in my legs are stiff and tight. Constantly. My legs are aching and feel really sore. It hurts to walk, because of this stiffness. And it keeps getting worse and worse. Walking long distances became very hard for me, as well as climbing up stairs. It feels like my legs are getting weaker, they're shaking when I try to bend them, squatting has become almost impossible.

When the muscles in my legs are at rest, they are twitching. A lot. And I also have this pre-cramp feeling, very uncomfortable.

So my legs keep getting worse and worse, and I very often feel like fainting. When it happens, it lasts for almost the entire day, and I am then incapable of eating.

I also feel like it has become more difficult for my to articulate properly, and I am over salivating.

Everything is getting harder, and I feel incredibly tired, more everyday. So tired that talking or moving requires a very big effort.

My legs are hurting and twitching so much that I'm having trouble sleeping.

I have done every test you can possibly imagine. My doctor conducted full blood tests, and they were completely normal. No lack of vitamins or iron, no infection, no nothing. Lyme disease has also been ruled out.

Since my head was spinning the doctors thought of benign positional vertigo, but no, they ruled it out after a test.

I went to the neurologist. MRI: normal. Evoked motor and sensitive potentials: normal. Lumbar puncture: normal. No inflammatory disease, no Multiple Sclerosis.

The symptoms in my legs (muscle twitching, stiffness,...) looked like ALS (Amyotrophic Lateral Sclerosis) so I got an EMG (electromyogram) in my left leg, which was clean, normal. The neurologist said he was convinced I did not have ALS, or any other neurological disease, but he had no idea what was causing my symptoms.

At this point, I have no idea who to go to. All the doctors ruled out every disease they could think of. They just told me they didn't know, basically. I'm just waiting to get better, but I keep getting worse.

I can't even go to university anymore. Every day, my legs are stiffer, my mouth feels weirder, my words sound more slurred, my energy is lower, my muscles are twitching harder, my head is spinning stronger, and I feel like fainting.

What can I do? Do you have any idea what could cause my symptoms? Or what kind of doctor I should see? I really need help, I am weaker every day... And at 20, I just stopped my life, entirely.

Please help me...

Thank you in advance

0 likes, 11 replies

11 Replies

  • Posted

    That you’ve accomplished all you have in a month is remarkable. You’ve managed to get rid of most of the obvious diseases. And of course, ALS a diagnosis which everybody who has weak legs gets to consider and then thankfully almost all get to discard it. Its surprising how many diseases have ALS as a differential. I think you have entered the world of rare diseases.

    I have myasthenia gravis and it took 7 years to get a diagnosis. And while MG has similarities to your condition, I’m pretty sure you don’t have MG. However, one of things you mentioned caught my interest. You stated “All the doctors ruled out every disease they could think of.” This is basically what happened to me for 7 years. You are likely to have a rare disease for which most doctors have little to no experience, so they couldn’t think of them. It wasn’t until I ran into a doctor who used a flow chart with up to 150 diseases on it that I got a diagnosis. The chart started with the most common cause of your symptoms and then a test would be run, if a negative test result occurred, then you go to the next most common cause, etc., etc. That way you look at all possible diseases.

    My doctor told me about 40% of people did not get a diagnosis using this process, otherwise they were idiopathic (unknown disease). But they can often treat idiopathic, with the right doctor.

    If you wish to investigate rare diseases further there are the NORD (National Organization of Rare Diseases), GARD (Genetic and Rare Disease Information Center), EURORDIS (Rare Diseases Europe) websites listing up to 7,000 diseases.

    I wish you luck, a doctor who can solve your problem, and a quick diagnosis.

  • Edited

    I think you need to find out if you have a magnesium deficiency. Some oral forms are easier to take than others (some can cause diarrhea) so do your research. Low magnesium can cause muscle cramps, etc. As the doctors appear to have ruled out serious diseases, why not get yourself a bottle of magnesium supplement and try it? it may help quite quickly, and even if it's not the cause it will do you no harm - it's an essential nutrient much like calcium, iron or vitamins. And a deficiency can be quite common.

    Take your magnesium separately from any other supplements or medications you may be on, perhaps with a little snack near bedtime.

    • Posted

      Magnesium can do harm if she has low bp. Magnesium naturally lowers blood pressure. Her lightheaded, dizzy, pre faint feeling sounds like very low blood pressure. If she has it, magnesium can make her bp dangerously low. But cramps do sound like magnesium deficiency.

    • Posted

      But wouldn't they have checked for Magnesium? I have very similar issues as sanjikah is having (plus many more) and magnesium was something they checked right off the bat.

    • Posted

      You do know this post is at least 7 months old?

    • Edited

      Yeah... Just also trying to find some answers since her symptoms are quite similar to mine and I'm just trying to figure out what the problem is...

  • Edited

    Have you measured your bp when you have that faint, head spinning feeling?

  • Posted

    Someone suggested trying magnesium, magnesium can cause pain and stiffness in the body.

    But first, make sure you don't have low blood pressure.....Magnesium naturally lowers blood pressure. Your head spinning, no appetite, pre faint feeling sounds like very low blood pressure. If you have it, magnesium can make your bp dangerously low and make your symptoms worse.

  • Edited

    What is your vitamin D level? This year my friend had similar weird symptoms. Main ones were feeling of fainting and head spinning. Couldn't eat. Slurred words. This lasted all day. All tests normal, doctors couldn't figure out what was wrong with her....turned out it was Vitamin d deficiency. She couldn't even move, weakness and faint/light headed feeling.....Doctors just didn't take it serious and ignored it because they didn't think Vitamin d can cause these symptoms. After high dose prescribed supplements, her symptoms went away. If you are going to supplement, make sure you take it with magnesium! without magnesium it's useless and doesn't absorb. And can make symptoms worse.

    She is feeling great now and is shocked vitamin D can cause such crazy symptoms. The docs still don't believe her and think it was something else.

    Especially the body/muscle pain you describe makes me think this is what you might have.

    Also, B12. Make sure it's over 500. Docs say that under 200 is deficient, but some people start having severe symptoms like yours under 500.

    Also, have you measured blood pressure? Is it low? When bp is low, symptoms like faint, dizziness, head spinning, no appetite happen. Look up addisons disease. Also orthostatic and postural hypotension. Positional orthostatic tachycardia too. Maybe this is what you have? Addison causes muscle/body pain too.

    But definitely find out your b12 and vitamin D level!

    Hope you find out what's wrong soon and things get better!

  • Edited

    I have very similar issues as you do. In the past 5-6 weeks my entire body has started to feel very weak with predominantly my left side feeling weak. I have muscle aches, feeling like I don't have as good muscle control, shaking easily when using my muscles, random pains, sore neck, noise sensitivity, brain fog, anxiety, dizziness (especially bad during exercise), muscle twitching, insomnia, feeling like my body is vibrating sometimes, having trouble with long walks/hikes because my legs feel stiff, fatigued and very low energy, and some other things as well.

    I've went to many doctors, a Neurologist, had my blood taken, CT Scan, MRI, etc. All tests were fine and they couldn't find anything wrong with me. My neurologist also said he was 100% certain that I don't have ALS nor sCJD or some other kind of dementia.

    It's comforting to know that I'm not the only one with these sorts of issues. Please do let me know if you end up finding out what your cause might be.

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