Discussions By Condition: I cannot get a diagnosis.

Starting to feel helpless!

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: mommy2paisley
  • November 2, 2008
  • 10:41 PM

I started having headaches in 2000, when I was 20 years old. I was first told they were sinus headaches, and treated them with those type of meds. I went to the chiropractor, etc., which seemed to help a bit, but not much. They've gotten progressively worse over the years. About a year ago, I was diagnosed with cluster headaches, then migraines.

A few months ago, the headaches got to be intolerable. They start at my cheeks, under my eyes, they go up my head, down my neck, behind my ears, down the middle of my back. My doctor gave me muscle relaxers, pain relievers, nothing worked. He gave me an injection in my neck, didn't work. X-rays of my neck were normal. He sent me to physical therapy, that just made me worse. After two visits of PT, I started having numbness up and down my arms, then my fingers all started contracting together. I could pull them apart with the other hand, but couldn't pull them apart on their own, if that makes sense. He sent me for a nerve conduction study and EMG, which was normal. He did an MRI of my neck, which was normal. He gave me a medrol dose pak which seemed to help a few weeks, then I was back to hurting a gain. The headaches NEVER went away, just the neck/back pain was tolerable those few weeks. Then my upper lip started to go numb and contract, same sensation as my fingers and my friend said it looked like I was making a funny face. My face felt tingly, and I could feel my eyes twitching, but that wasn't visible in the mirror, or to anyone looking at me. I went to the doctor, and told him the pain was getting worse, and went over the new symptoms, and he sent me for a brain MRI last Thursday that I haven't gotten the results back for.

I'm also having a really hard time thinking of things when I'm talking. My mind just goes blank, and I can't come up with the words I'm wanting to say. I am doing this with my work, too.

My upper muscles, arms, back, shoulders, all feel so weakened, and my head hurts soooo bad. I just feel like I'm going to lose it! I am a court reporter, and this is making it VERY hard for me to do my work! The last deposition I took, I felt like I couldn't figure out what I was doing! It was like I couldn't remember HOW to do things! I'm terrified of WHAT is wrong with me OR that they're not going to be able to find anything since everything else has come back normal, and that I'm just going to have to deal with this pain FOREVER!!!!!!!!!!

What can I do? I'm starting to feel scared and helpless! I'm hurting all the time, my work is suffering, my housework is always not done, so my husband always has to do way more than his share, or it's just a total disaster in our house, which makes us all stressed out, my poor daugther doesn't get her mommy's attention like she deserves, and I just feel like I will go crazy if I have to continue this cycle of waking up hurting, hurting through the day, and going to bed hurting one.more.day.

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7 Replies:

  • Anyone have anything similar????
    mommy2paisley 3 Replies
    • November 4, 2008
    • 02:48 PM
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  • Get checked for celiac disease. Your numbness/tingling, headaches and fatigue may be related: http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/ Also, have you had your sinuses looked at? You may have a sinus infection or even a tooth problem.
    aquila 1263 Replies
    • November 4, 2008
    • 05:07 PM
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  • Do you know if you grind your teeth in your sleep?
    Felsen 510 Replies
    • November 4, 2008
    • 10:27 PM
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  • No, I don't believe I do. I've asked and no one believes I do that's been around me when I'm sleeping. Doctor called, MRI of brain was normal. Lip contracting has been going on ALL day today. Mom noticed it while I was talking to her this afternoon. She said it made me look like I have no teeth. I wasn't aware it was noticable to people if I was talking. I thought as long as I smiled, didn't let my face look "still" that no one would notice. Now I'm going to be so self-conscious when I'm at work and can feel it happening because I'll know that I'm looking like a freak!:o
    mommy2paisley 3 Replies
    • November 4, 2008
    • 10:34 PM
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  • Wow. This sounds so similar to my story: headaches my whole life, migraines with vomiting at age 19, worsening at age thirty and I am now disabled...all sounds like me except for the lip pinching and fingers contracting. Instead my eyes and lips twitch. And it's a massive slew of symptoms. I tried every drug, every doctor, even botox. No luck. Now they are saying I have an autoimmune disorder which would account for my headaches and other symptoms (vasculitis.) Prednisone has helped quite a bit...finally a little bit of relief. They are doing a vascular workup to pinpoint the problem. If you've already seen a neurologist and it hasn't helped (like me,) perhaps you should try a rheumatologist (like me.) A rheumatologist will look for an autoimmune disorder (the immune system attacks the body.) They should check your SED rate and look for evidence of inflammation. There are a number of autoimmune disorders which could account for your symptoms and they often occur together. Scleroderma comes to mind when you refer to your fingers. It causes fingers to curl due to tightening of the connective tissue. Good luck and don't give up. Be persistant and you will find the answers.
    IamWHO 5 Replies
    • November 5, 2008
    • 02:43 AM
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  • The MRI should come with a result
    Anonymous 42789 Replies
    • November 5, 2008
    • 02:56 PM
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  • hmmm I would personally be looking at the spine itself... My Mom had similar symptoms and she currently has spinal stenosis which started off looking like osteo-pina of the spinal column it started off at the base of her skull beyond that they have been unable to do much else... I have her taking a specially patented form of vitamin that has a 85 - 97% rate of being fully absorbed and her spinal column has been getting stronger but not quickly enough because they did not catch it until she had multiple fractures in her spinal column
    Christina2008 10 Replies
    • November 6, 2008
    • 03:32 PM
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