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Undiagnosed and unsure if it's all in my head
I've had peculiar symptoms for months starting October 31st. What started as eye droop, went to pins and needles (tingling) across my left arm and leg and then spread to the rest of my body. For weeks, I had issues when I first woke up from getting off the bed and generally had struggles with some day. Since my symptoms are acute, I believe when it goes away for a few weeks it's gone.
Since of my eye pain and fluid leaking out of one of my nostrils doctors had considered IIH/csf leak for sometime, but the lumbar puncture came back 19 (so practically normal). I had no papilla edema when tested by the eye doctor. Since, previously at the beginning of the journey doctor's have labeled it stress related and have mentioned me to being hyperfocused on my sensations, I am wondering if there is a possibility this is all in my head.
Of recently I have been dealing with weird stiffness in my right arm, going to my knees and legs. The pins and needles flared again after a two weeks or so with minimal sensation. I had tests for autoimmune, but everything came back normal. I have no idea what else to do at this point, I have a follow up with neurosurgery, but I don't know what else to do. As a younger individual, I feel dismissed by so many of my doctors and have been online for school for this semester due to this. Rheumatologist immediately said there was no way that anything autoimmune was going on a few days ago, so I went home immediately. I have had spine and brain MRIs (had chiari 11.75mm, but probably unrelated) and EMG, at this point I probably have nothing left to explain it atp.
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You have patient rights. Learn them and keep researching an asking questions. A condition has to be ruled out by specific means, not just by providers saying they don't think so.
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1 Reaction@raliza
I have been doing so to some extent, but haven't asked about MS or anything like that. Doesn't seem that possible given it didn't show up on mri. I have been told by 3 different doctors it's stress and it's getting to me. Sorry my previous response was to a different question.
@grass16 I wonder if Cleveland Clinic could/would help …?
I haven’t read previous comments as carefully as I’d like. But from what I did read, yikes! At age 17 It does sound mysterious. You had Lyme’s disease ruled out? One more thought, have you suffered serious trauma(s?) Most of us have by 17 but don’t recognize them as such. As you get ready to blast off to a new demanding phase of life, perhaps something needs to be resolved? Anxiety? Or have you been checked for early arthritis, seen an immunologist? (I get an eyelid flutter like a crazy cop in the Pink Panther movies when I’m under stress. And more…) Life sure does get weird & complicated as you grow. All best wishes to you.
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3 Reactions@rashida I live pretty far from there and doing follow-ups while in college might be a struggle. I'll ask to possibly reach out to them if my upcoming Duke appointment doesn't work,
@pegcmke
Never suffered any trauma at all shockingly. No to Lyme's disease, I have seem a rheumatologist, not an immunologist (they're similar right?). They checked me for rheumatoid arthritis with testing. I haven't had eye droop again since the initial stages and not really an anxious person, but my physical therapy does have me doing some yoga or something. I believe that it might of gotten somewhat triggered from stress and my symptoms are kind of coming on their own now. Thank you for the well wishes.
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1 Reaction@grass16 Not sure if you plan your conversations with your doctors but it might be a thing to try and prioritize your concerns and questions for upcoming appointments. Lots of good tips and suggestions on the Patient Revolution website - https://www.patientrevolution.org/tools
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1 Reaction@johnbishop
I do write down my symptoms over the days and bring it in to mention to them, but I can try to bring some concerns next time. I am planning on asking for another spine and brain mri with contrast as the previous comments mentioned.
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1 ReactionI'm so sorry you're going through this! I am dealing with some of your symptoms as well! It doesn't sound to me like it's all in your head. Keep pushing and keep searching until you find a doctor that will really listen to you and willing to keep looking!! I am praying for you! Don't give up!
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3 Reactions@raliza The doctors before my mom passed on (She was 76 and and in pain-after two weeks in the hospital ) was told by doctors that the stomach pains she was suffering from were in her head- sent her home--Fast forward 6 months , my Sister took her to the Mayo Clinic in Mn. There Doctors found a tumor growing out of her pancreas into her stomach and the bottom of her stomach was black because it was dead where the tumor penetrated it. They operated successfully but my mom didn't have the strength to pull through and ended up getting sepsis. This still eats at me.
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