UNDIAGNOSED

Posted , 5 users are following.

Please somebody try to help me figure this out.  I will take any opinion and I am desperate for answers considering doctors have absolutely no clue what is going on.

2 ½ years ago I started with a rash all over my arms, torso, and legs, doctors thought it was eczema and sent me away with cream that did not work.  2 months later it started going away on its own. I then started with a sore throat on the right side that wouldn’t go away.  Although doctors did not understand it they put me on antibiotics to try and see if that would help.  I then started with sinus infections one after another despite antibiotics.  About 2 months after that I started to feel a little better and I just finished all my antibiotics and was returning to normal.  I decided I was well enough to go out and have lunch with a friend.  We were talking, and everything seemed fine until I felt 2 pops on the right side of my head.  I immediately started getting double vision along with numbness of the arms and I began to feel like I was going to pass out.  I excused myself and left and as soon as I got home I thought that I just needed a nap.  2 ½ years later and I’m still a mess and nobody can figure this out. 

My symptoms right after the incident:

Blurry vision

Immense head pressure that seemed to migrate

Light and sound sensitivity

Fatigue (all the time)

Anxiety (the anxiety crept in because I couldn’t understand what was wrong and why my body was not getting better)

Air hunger (almost mechanical breathing)

Lightheadedness

Dizziness upon standing (or just all the time)

Numbness of my hands, mouth

Jaw pain

Constant yawning

White tongue

Disassociation (symptoms always made me feel like I was viewing the world form the outside instead of living in the moment like everything else)

Brain fog

 

 

My symptoms now:

Brain fog

Dizziness

Lightheadedness

High anxiety (I am now to the point that I fear that they will never figure it out and I will be this way forever)

Blurriness

Light and sound sensitivity

Periods of breathlessness

White tongue

Disassociation (symptoms always made me feel like I was viewing the world form the outside instead of living in the moment like everything else)

 

I have been to every doctor you can imagine:

Cardiologist

Eye doctor

General

Neurologist

psychologist

And I’m sure a few more

Test preformed:

Every blood test you could imagine including a Lyme test (4 times) negative

Mri

Cat scans

Thyroid

Abnormal test:

Platelet count has been on the high side of the scale since this started and my wbc. 

Platelet count: 411

Wbc: 10 (this came down it was usually at a 12)

 

I have been on a quest to figure this out because I am a mom and I can’t live this way forever.  I need to be at my best and I feel that as soon as a doctor can not figure it out they just pass me off and I understand that but what I don’t understand how I can have so many symptoms and have no answers.

These symptoms are everyday apart from the air hunger which almost seems mechanical at times.  My vitamin d is always low for instance I’m at a 25 right now and that’s good for me because I have trouble getting it any higher.

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  • Posted

    I’m sorry to hear what’s you’re going through. Have you had your IgG levels tested? Repeated infections sound like it may be linked to some kind of immune deficiency. I found out that I have hypogammaglobulinemia, which is a low IgG level, and was shockingly to blame for all of my neurological and infectious issues. 

    The other question is, all of your current symptoms sound neurological. What kind of a neuro workup have you had?

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  • Posted

    So numbness and tingling could be anxiety - when mine is panic related, it shows up as a strong tingling in my hands, feet, and mouth. I also had this regularly when I first got sick, and nobody could seem to identify the cause. I ended up having nerve damage all over my body, but I could tell the difference between the anxiety and the nerve damage, because when I took a hot bath, all of the anxiety symptoms would stop for a while. So if you can find a way to calm your system for a little while and stop being scared (easier said than done, I know), it may be easier to identify what is anxiety from the illness, and what is the illness itself. 

    Our IgG, IgM, and IgA are our antibody levels, and show how capable our bodies are of fighting infection. If you have deficiency in one or more of these areas, it could be an immune system explanation for why you keep getting infections, and even for some of you’re other symptoms. Our immune systems control so much of our bodies. My immune deficiency was triggered after a stomach virus. There are lots of viruses that could have caused your rash and neurological symptoms, as well as leaving you open to other infections. Have you seen an infectious disease doctor about viral processes or your repeat infections?

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  • Posted

    A lot of your symptoms could be either an iron deficiency anemia and or a B12 deficiency anemia. Those are easy simple blood tests that your doctor should have done but you did not mention that he did. I'm assuming that you no longer have the rash but I would see an ENT anyway. He might be able to come up with a reason for the popping you experience and the light and Sound Sensitivity that you're feeling. One big reason why I'm thinking iron deficiency anemia is because you've talked about having problems getting enough oxygen. Without enough iron which supplies your blood with oxygen your going to feel like you can't get enough oxygen. I think if you Google both of these deficiencies you'll see how many of your symptoms match either one or both of those. And I strongly suggest you see an ENT right away.

    I want to address your white tongue that you've mentioned that you have. Did your doctor mentioned that it may very well be thrush? Unless you take steroids such as prednisone or use a steroid inhaler you're not nearly as likely to get thrush but it can't happen. And once again it's an easy treatment with some medication you take to kill the thrush. BTW thrush is the same fungus as a yeast infection and as athlete's foot. So if you have had a problem with yeast infections in the past then it's likely that you may have thrush. That is if you're a girl of course. LOL

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