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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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Have you had a neurology consultation.?They would be more medically attuned to pursuing your symptoms for follow up. Assuming you had
unproductive MRI , CT and PET results.?
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3 Reactions@seniormed
Yes, I have had a neurology consult. That's when I got the different autoimmune testing done, unfortunately it is very hard to find an appointment with my new neurologist, I have only been once. I had to replace my own neurologist after a terrible first appointment with him. Have not had any PET or CT, only one MRI done. I have been trying to ask to get another one done, but I have braces, so seeing issues such as CSF flow obstruction from the Chiari, etc is pretty much out of the options right now.
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2 ReactionsDid your MRI include contrast dye?
@grass16, Sorry you haven't gotten any answers after seeing so many different doctors. The Chiari malformation of 11.75 mm seems quite a bit above normal from what I've read. Did your doctors talk to you about the MRI findings and what they mean?
I don't know what your age or situation is but have you thought about seeking help at a teaching hospital or major health facility like Mayo Clinic that use a multidisciplinary team approach for diagnosing and treating patients?
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1 Reaction@johnbishop
Thank you for the response, I am 17, so about to go into college, but not old enough to be considered for adult doctors. One of my doctors did mention that I am not being seen that seriously by my pediatric doctors because I am about to graduate to adult. Mayo rejected me as a prospect patient due to pediatrics being full (probably didn't see my case serious enough either) and I have been following up with Duke, but it just does not seem to be going anywhere at all. I know it's only been a few months from my initial diagnosis, but honestly I just feel so many of my doctors are irritated by me (my duke Neurosurgeon is wonderful though). I got the MRI done in the emergency room and my old neurosurgeon said it's likely nothing, the emergency room doctor said it's likely nothing, so I am just lost at this point.
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2 Reactions@sandy8043
No, I did not.
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1 ReactionHave you researched Chiari on line from good medical websites? I would suggest Mayo Clinic, Cleveland Clinic or some other reliable source for the websites to check out and see if it tells you what kind of doctor you need. I know personally some doctors do not have a great bed-side manner so maybe get another opinion. Probably a neurologist.
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1 Reaction@grass16 Several years ago I had the. Pins and needles followed by numbness that started in my feet and traveled up to my face. My MRIs showed nothing until they repeated them with contrast dye. The lesions on my spinal cord lit up like bright white LED bulbs. I was diagnosed with Transverse Myelitis. Its an inflammation and demyelination of the spinal cord.
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4 Reactions@sandy8043
Thank you so much for the suggestion. I will definitely ask my doctors if they will considering running that for me. Are your symptoms chronic? Mine are more acute and kind of inconsistent in their presence, so unsure if it lines up with that. Were you also checked for MS?
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2 Reactions@janeilene
I have had a neurologist opinion, they also said it's unlikely to be chiari. My neurosurgeon said that as well. I have researched heavily on the topic, but I'm afraid if I go in asking if it's possible to be this or this, they'll think I am trying to self-diagnose myself. I am unfortunately a minor, so I don't have much say rn.
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