u/zee_yo

Lumbar puncture 3 months ago at this point
Symptoms started as feeling of pressure dropping from my head with a high pitch sound
Now my symptoms are: severe arm and leg heaviness and loss of sensation, I find opening my palms very challenging like they’re made of rubber
I used to take 1500 mg to 2000mg of acetazolamide, now 250 mg causes extreme brain burning that I can’t tolerate specifically at the base of my brain
Severe squeezing tight sensation in my spine from neck to sacrum that doesn’t stop and it’s very painful to sit because I’m aware of how full heavy and tight my spine is
Really hard to think and talk I feel like I have Parkinson’s, can’t even change trash bags without deep thinking
Extreme fatigue
Upper arms that crack I feel my humerus cracking and crunching when I turn my arms
Feel like gravity is pulling me to the ground
Pulsing sensation from head to left arm
Yes I had a blood patch 20 days ago which was 2 months post lp but I don’t think that did anything
Does anyone have these symptoms??

Ever since this started happening after a lumbar puncture 2 months ago, my arms and legs have been so heavy and slow, I’m not talking like oh I have the flu heaviness no, THEY feel FOREIGN LIKE THEYRE NOT MINE, I can barely lift my arms anymore, sometimes I forget my legs exist and even when I feel them they’re just not as felt as before when I was healthy.
This is talking a toll on my mental health. Please tell me I’m not alone.
All my imaging is clear but it’s just regular mri, I did a 2 month late blood patch with 9 ml but ofcourse that failed and I’ll force my neurosurgeon to do more.
I’m so scared yall.
The back pain, the stiff neck, the EXTREME COGNITIVE DECLINE
I’m so scared please tell me I’m not alone
Tell me you had a CSF leak from a lumbar puncture and it was fixed by a late blood patch months later and that you had cognitive symptoms that recovered, please do.
I cry everyday. I go see my neurosurgeon daily and cry endlessly and he has been nothing but patient and kind.
Yall this is affecting me.
The electric shocks all over my body, laying down and not being able to raise my legs cuz I can’t feel them.
This is too much I was healthy 2 months ago.
Please tell me you went through exactly this. Not similar but exactly.
I don’t see hope at all.
I just wanna smile again
Today I was crying screaming top of my lungs on the highway on the way back from the neurosurgeon, couldn’t even see the road just speeding with blurred eyes from tears and I didn’t care.
Please speak some patience into me.
Thank you.

The title speaks for itself.
Please please validate me and tell me someone has this symptom.
I can’t pick my arms up anymore they’re disturbingly heavy, sometimes or most times they’re too heavy they tug down on my shoulders and neck to the point they make a CLUNK sound when I try to raise them now.
Anyone?

Last year September I was diagnosed with idiopathic intracranial hypertension, based on only eye exam and symptoms, and I was put on acetazolamide until April of this year. I lost some of my vision, and my doctor was very pushy getting me to do a lumbar puncture I did and every week I have gotten worse.
It started with some weakness in my left hand, and then it became my entire arm up to my shoulder and then it included my left leg then my right leg and then my right arm fully so for two months I have been carrying bags of sand and lead instead of arms and leg they feel so heavy it’s unreal.
I also have twitching of the muscles in my thigh, and I also have pins and needles all over my body head to toe, but that has lessened. I also have severe neck and back pain and I just feel like my brain dropped from its original location. it’s not the same anymore.
I have tried warning my doctor about this one at first started happening, but he just said I have anxiety and brushed me off instead of enlightening me about a blood patch or something anyways these pass and since May which is the month, I have the lumber puncture I have been admitted so many times so many brain imaging so many spinal imaging I have had no puncture myelogram of the spine I have had imaging of the vessels of my brain of my neck. Everything comes fine, but I know I’m not fine. I know it. I feel so weak. My cognition is so horrible. My arms feel so heavy from the shoulder down. It’s so frustrating and I feel stupid driving has become difficult work has become difficult. I’ve taken so many sick Leaves.
I found a very kind surgeon and after basically nagging him for a month, he finally had me do a lumber, an epidural blood patch two or three days ago I’m not gonna lie. There was not much relief, but the only relief I had was my back pain has disappeared, but this only stayed for 24 hours and quickly came back. I wanted to meet him again and push for another epidural blood patch.
please tell me I’m not alone and please tell me there’s light at the end of the tunnel because laying all day is so depressing. I feel so depressed. I have become horrible at my job. I just feel so dysfunctional. I can’t shower. I can’t do anything else and I stutter now. Please tell me this will pass. Please tell me you’ve been through this and it passed with just blood patches because I can’t afford extensive things like CT myelograms and surgeries and stuff.