Advice on how to get a proper diagnosis?

Posted by josephpalmq @josephpalmq, Jan 22, 2023

Hello everyone,

I am writing to ask for your help and advice in my current situation. I have been experiencing a range of symptoms for the past year and a half and I am desperately seeking answers and healing. I have already gone to multiple doctors and undergone a variety of tests, but so far, I have not been able to find a definitive diagnosis. I have a strong suspicion of what my condition might be, but I want to see if others can come to the same conclusion based on the majority of my symptoms.

Here is a list of my symptoms:

Mild aching in my back between my shoulders
Tightness in my neck
Intense tension in my head, particularly when laying on a pillow or wearing headphones
Cooling sensation moving through my eyes and forehead
Numbness in several spots on my face
Blurred vision
Spasming in my left eye
Fluid dripping down the back of my throat
Mild but consistent nausea and poor appetite
Extreme difficulty thinking, finding words, and communicating in general
Extreme fatigue, regardless of how much or how little sleep I get
I have had a CT scan, an MRI, and an X-ray done, as well as nerve testing, but nothing has been found. I even joined the military in hopes that my symptoms would fade through exercise and a disciplined daily routine, but after four months of training, my symptoms never improved and have even worsened.

I want to emphasize that this is an absolutely debilitating condition and is in no way manageable for me. I am at a point where I am struggling to keep my job and my family is suffering as well. I am willing to try anything and any advice on how to get myself the help I need is greatly appreciated.

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Good morning, those symptoms sound horrible and I hope that you can find answers. Let me if I may toss this out there for you to investigate. My wife, age 53 had a chronic condition known as Hemiplegic Migraine (HM). Migraine is a neurological disease & it is much much more than a pain in the head. Sometimes there is no headache. Plegic refers to paralysis, and in some, one side of their body or portions of it becomes numb, limp, and useless. From eye sight, hearing, ability to move limbs, various numb spots on the face, back, etc. There is even various levels of cognitive reduction....everything from running on 6 of 8 cylinders, to 100% aphasia. No one size fits all. A few resources: World Migraine Summit, Assoc of Migraine Disorders, or even on the HM Facebook sites. Routine PCP's & dad to say neurologists don't have a clue. Just take a look at these few resources to see if anything sticks. I pray you find a solution.


Good morning, and welcome to Connect @josephpalmq. I'm so sorry to read all that you are struggling with and having been in the same situation, do very much understand your concerns. You came to the right place. As far as your job goes, have you reached out to HR about FMLA - Family Medical Leave Act while you work through figuring out your health?

Family Medical Leave Act -

Having a plethora of symptoms with no real diagnosis stirs up a ton of emotion, on top of stress due to responsibilities, and fear and depression. I remember when all of my tests to determine cause fell flat and left me confused. Our physical, emotional and behavioral state snow balls which can lead to more symptoms and more debilitation. It's called the "cycle of pain" and you sound like you're in it, my friend.

We are not doctors here on Connect, but do share our personal experiences and knowledge. I'm hoping you receive feed back to your questions like @donnie0810 has done.

What I would like to offer you based on my experience which sounds similar to yours is, I was in a bad place for a few years not knowing what was wrong with me because doctors had no answers. They could not explain my situation and tests results did not line up with my symptoms. I was deconditioned and emotionally distraught, procedures and meds were no longer effective, and I had to stop working. Learning about CSS was my light bulb moment and I think looking into is worth your while.

Are you familiar with CSS? Will you please let me know your thoughts on it after researching? I have more info to offer if you think it lines up with what you are experiencing.

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