I was diagnosed with arachnoiditis in December and agree that many of the symptoms sound familiar. It’s definitely a depressing diagnosis but at least now I have answers.
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I fainted on Saturday.
I don’t have a history of fainting.
I got a sensation of pressure in my ears, like from an altitude change. Felt swimmy headed shortly thereafter and then I was gone. Thankfully I was with family and they caught me before I hit the floor. I came to quickly. Puked. Then felt normal after resting a bit. Weird.
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It was very good you were not alone. I hope you get answers and treatment soon. It is so frustrating to have a condition and not know what it is. Take care.
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Have you let your neuro know? This is worrisome enough that it’s worth a portal message or a phone call. Don’t wait until the next appt to share this new development, okay?
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If you aren’t already doing so, it might be helpful to write your symptoms down and how you are feeling on a daily basis so when you talk to your doctors so you don’t forget something and you have a timeline for them to go off of. Temperature and blood pressure might be good to record too.
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Thank you
I’m on it. I have an appointment with my PCP tomorrow, the immunologist Thursday and the neuro Friday. But I probably should call and let neuro know before then.
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I am keeping a log; dates and symptoms etc but it’s pretty basic so far. It’s a good idea to record details though.
I’ve been taking my temp pretty regularly since my dog’s Lyme symptom was fevers I guess I’m paranoid lol. It’s been normal so far but I’m on enough NSAIDs to cool a volcano lol.
Blood pressure always good; Mr LS is hot n heavy with the blood pressure machine.
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I hope they figure things out soon!
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Best of luck getting answers this week. Jingles!
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Well that’s a scary update. I saw on the news they now have listed nerve inflammation (? something with nerves) as a potential side effect of the J&J vaccine. Is that the one you received?
Guillian-Barre syndrome. 5 cases out of the million plus doses given, I think I heard. Most common cause of this rare syndrome is an infection, which then triggers an autoimmune response attacking the myelin sheath of nerves. Vaccines are a known cause as well. Distressing as the symptoms are, the patient generally recovers completely with only supportive treatment.
This has not been seen in people getting the mRNA vaccines, just the more conventional J&J.
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I was curious which vaccine the OP got, I remember she said her DH was J&J only, but wasn’t sure what she got.
Perhaps it might be about the same thing, but for the mRNA vaccines too? Can’t say yet!
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That is scary. So glad you weren’t driving a car!
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Moderna - It’s in her first post, listing timing of two shots relative to symptoms
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Thank you, I missed it! I wonder if this is something worth reporting to the “powers that be”, just in case? Who would you report it to?
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No I got the Moderna. The neurologist said he was seeing cases of spinal column inflammation as a vaccine reaction but he didn’t specify what vaccine. Also said it could be “long COVID” but that he thinks that’s less likely since I didn’t have COVID (as far as I know, I suppose I could have had an asymptomatic case)
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My neurologist says he has seen cases similar to mine as a vax reaction, but it seems like those cases must not be the GB syndrome as the number of cases doesn’t match
Yes very scary! I am so grateful I wasn’t driving or handling the horses or something!
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No clue. I wonder if the neurologist reports the cases he sees?
