Undiagnosed and unsure if it's all in my head

Posted by grass16 @grass16, 6 days ago

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.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

Profile picture for Randy Shields @randallshields56

@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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Thank You ,was a long time ago but still bothers me , i make due- Ps Happy
Easter today and to everyone on your team.

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Profile picture for Randy Shields @randallshields56

@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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Thank You for the hug and Happy Easter.

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Update: Talked to duke today and they considered putting me on thaizolimide for the intermittent leaking. They said that the Contrast spine and brain mri was not necessary. They are looking to do a neck turn mri or smth regarding my spine C2 bone? Said my brain fluid probably fluctuates or something.

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Profile picture for grass16 @grass16

Update: Talked to duke today and they considered putting me on thaizolimide for the intermittent leaking. They said that the Contrast spine and brain mri was not necessary. They are looking to do a neck turn mri or smth regarding my spine C2 bone? Said my brain fluid probably fluctuates or something.

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@grass16 seems like a step forward … perhaps this will give an answer to your problem with stiffness in your arm and leg or lead to further investigation. If you get no satisfactory answers though, do consider going to either the Mayo Clinic (I believe there is one in Florida …?) or a Cleveland Clinic in either Georgia or Florida.

Hopefully you will find an answer at Duke and will not have to look farther … 🤞🏼🙏🏼

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