Wow. I have never had someone actually truly believe me and give me something I need right away. First off I should say my neurologist is convinced I have CIDP and my reactions from my spinal tap and blood patch 3 months could be a cause to my reaction
So I went yesterday to my neurologist to go over my muscle biopsy report along with my nerve pain from my blood patch. My muscle biopsy shows denervation a long with other tests supporting CIDP.
So, when I told my neurologist about my nerve pain he thinks it could be my body just reacting poorly to any sort of trauma. Not only that, but where I got my muscle biopsy is still a tiny bit swollen 6 weeks later which he thinks is also a reaction of my body being in overdrive. His clinic is connected to a infusion clinic. They work together. So, he told me he is sending in an emergency solumedrol 500mg infusion for right then and there at the apt so I got it then for an hour, then I'm going in today, and tomorrow for more infusions.
I should feel amazing about this but you know, pain messes with your mind and I am happy but it doesn't last long. Regardless, my neurologist truly believes me, didn't question it, and acted right away. I'm really hoping this helps because my nerve pain and low back pain can be unbearable
So he basically put me on the emergency arachnoiditis protocol.
I'm getting an MRI on Sunday to see what damage has been done to my lumbar spine from a blood patch. Long story short, got lumbar puncture, CSF leak, blood patch = lumbar electric shocks + muscles around lumbar cramping + from soles of feet to lumbar spine feeling like I'm being stung by bees + sensation of ants crawling all over legs + feeling of something swollen in my lower back.
Like, I know something is really wrong with my lumbar spine. The dude who did my blood patch royally fucked up because during it I got bad nerve pain and it hasn't gone away 2 1/2 months later, got worse. Nerve pain and spine stuff isn't anything to mess around with especially when it's combined. I want to know what's wrong but at the same time I don't. Because, if I find out what's wrong then I can learn whether it's treatable or not (I doubt this) along with getting a diagnoses and then I can learn how bad all my symptoms will progress + what else is to come.
My neurologist thinks I still have spinal fluid leaking, inflammation, and a mass forming in my spine. So in short, arachnoiditis. No bueno! It don't feel good. What upsets me the most about this is what if we can get my other pain figured out but now I'm left with permanent damage in my spine? I've gotten Prednisone twice for this and it's helped both times.
Do you think I can go to the store and upgrade or buy a new spine? Sounds good to me!
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I’m hoping this muscle biopsy will give me some answers. The emg I had showed muscle and nerve not working correctly in my thigh we haven’t found anything that can tell us why and what damage was done during my period of acute inflammation. Hopefully this can give us a hint as to what’s up.
When I woke up from the anesthesia I came to and I was fist bumping every nurse in the room 😂 They said I won the award for the funniest wake up of the week. For some reason I told a nurse that had nothing to do with my case that I loved her while she was leaving lmao
About 2 months ago was when I got my blood patch after my lumbar puncture a week and a half prior.
For a week after my BP I had bad nerve pain in my legs. I was on prednisone for a week after and it helped it subside until now.
So about 2 months after the blood patch my nerve pain in my legs has come back. It took a month and a half after my blood patch for my csf leak symptoms to finally go away.
It’s like I just can’t win. The nerve pain in my legs has come back with a vengeance. It’s the worst when I’m laying down. It’s like someone is trying to rip off my legs from my the soles of my feet to my low back. It’s like a bad stinging pain that you just want to stop because it’s so uncomfortable. Not only that, but it’ll feel like bugs are crawling all over my legs.
It started off small but then has got worse every single day to where I can’t even sit comfortably anymore without nerve pain. Only been a week since it came back and it’s hit hard. My lower back where I got my blood patch has also gotten sensitive and hurts.
Not only that, but just a few days ago I started to get headaches again while standing up. I was like ahh this has to just be a coincidence no way I’m leaking again. Well, it hasn’t stopped. I am also getting nauseas.
Nerve pain is the absolute worst because you know it can grow to absolutely ruin your life and there’s no stopping point for it. I don’t know what to do anymore. I’m obviously going to talk to my doctors but like Jesus Christ. I can’t deal with damage from my lumbar puncture and blood patch.
What I don’t understand is that gabapentin doesn’t help this nerve pain at all, but my Hydrocodone does. Gabapentin helps my other nerve pain but does zip for this. I don’t know why Hydrocodone would help this situation. Ahhhhhhh I just want to scream it’s never ending
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