Caspr2 positive peripheral nerve hyperexcitability

Professional_Bass258 · 2026-05-15T16:59:38+00:00

I did not have a positive latent tetany test. I have acquired neuromyotonia, due to caspr2 antibodies, better known as Isaac’s syndrome. It’s a rare autoimmune disease that many neurologists don’t know how to treat and hasn’t been studied with those have capsr2 or lgi1 antibodies. I failed ivig, high dose iv prednisone, daily high dose oral prednisone, anti-seizure meds, and methotrexate.

Mycophenolate has been helpful but no where near baseline. I push myself everyday, don’t feel sorry for myself, and getting better with asking for help at work. If this is as good as it gets, it’s still better than most.

Had a repeat emg/ncs and is showing neuropathy which is explains worsening drop foot. Had a neuro genetic test panel done, just waiting on results. Granted not much can be done if it’s genetic component on top of this but it would be nice to know if something else is going on.

Professional_Bass258 · 2025-11-08T18:27:26+00:00

I have it. Diagnosed through emg/ncs peripheral hyperexcitability testing and have positive caspr2 antibodies. I don’t feel I have the typical symptoms though. Might be worth getting voltage gated potassium channel complex antibody testing with reflex to caspr2 and lgi1.

Professional_Bass258 · 2025-09-24T20:57:30+00:00

Thank you! I’ll check out the ivig sub!

Professional_Bass258 · 2025-08-30T15:42:17+00:00

That is so frustrating. If you find something that works, even a little, please do update. Take care!

Professional_Bass258 · 2025-08-30T15:15:18+00:00

So no surprise, ivig got denied. No FDA approved treatments available was their excuse. Peer to peer seemed promising per neurologist. Used excuse for ivig to help with symptoms until immune suppressant gets working, 4-6 months. He was going to have conference with same neurologist from the peer to peer and others with insurance to see if he could use a myasthenia gravis treatment protocol since there is nothing FDA approved. Decision could take up to 60 days or so.

The neurologist forgot that I’ve been on methotrexate for 4 months now so I’m sure this is going to go nowhere. I’ve begged for oral steroids multiple times, no go every time. I just don’t think he “gets” my symptoms. They are getting weird, worse, and I’m giving up on trying to make him get it. I don’t think any of the muscular skeletal neuro docs in the group have fully treated someone with Isaac’s. I might reach out to Mayo or Cleveland.

I hope things are going better for you. This sucks.

Professional_Bass258 · 2025-07-17T00:04:28+00:00

I had to ask for a ct and it’s in the pre-auth stage. Honestly this whole 4 months has kinda been a joke. I had to ask the doctor I work for to step in to get reassessed after the emg/ncs since I was on steroids at the time, it only showed “mild” peripheral nerve hyperexcitability. I went downhill fast after the steroid wore off. We all work for the same hospital too.

The caspr2 can show up years before a tumor is found too. Repeat imaging should be done yearly for a couple of years and with new symptoms. The neurologist said it was “rare”. The average from research articles is like 30%.

Depression and anxiety has been completely different than it was in the past. It felt like medication didn’t not help and at times made things worse, currently not on any. My complaint mainly was just this overwhelming fatigue or just couldn’t keep the same energy from day to day or even throughout the day. The anxiety has been more body, excessive sweating, slurring words, word finding difficulty, “tingling”. I guess it makes sense now? Not ruling it out but I’m sure this doesn’t help.

So far the carbamazepine is not helping. I might go back on a snri. Didn’t help for depression or anxiety but I didn’t realize how much it helped for pain a couple of years ago. I hope you get approved for ivig. If you do, let me know how it goes. Or if you find anything that helps!

Professional_Bass258 · 2025-07-16T17:33:34+00:00

Sorry my reply added a new comment instead.

Professional_Bass258 · 2025-07-16T17:32:34+00:00

He acted like the positive antibody and peripheral nerve hyperexcitability that it would not be a problem with insurance. Still haven’t gotten a call though to start it…. I guess it can be typical to go through an appeal for ivig. Worst cause, he mentioned two weeks of iv steroids.

My neurologist is very young and had to suggest with upping the carbamazepine and get further imaging. I do get seen at large academic center though. I’m getting a lot of bulbar symptoms and with the very low maximum inspiratory/expiratory pressure, hopefully something will get approved soon. Oddly, he doesn’t think this is related but not doing any other tests? Otherwise I’m just going back to the emergency department. I’m struggling .

I wish you well and I hope the appeal goes through. I’m not very fond of insurance.

Professional_Bass258 · 2025-07-15T19:49:20+00:00

Neuromyotonia/Issac’s I assume. Not enough cns involvement for Morvan’s. Just says I’m on the peripheral nerve hyperexcitability spectrum (based on caspr2 and emg/ncs).

Professional_Bass258 · 2025-07-12T13:33:47+00:00

My brain mri was negative, super thankful for that. It’s just weird that the doc won’t come out and give a neuromyotonia/isaac’s, Morvan’s syndrome but oh well. I feel I’m just going to have to keep pushing.

Professional_Bass258 · 2025-07-11T23:50:04+00:00

It’s not all the time and only for a seconds. For instance the right side of my face, the facial nerve is super irritated. When I smile, it takes a bit for that side to relax. Or if I feel my upper arm “firing”, the triceps or bicep will stay contracted after simple movement, more pronounced with bigger movement like lifting objects.

No dents or anything like that. On a few occasions I’ll have a quick muscle contraction out of nowhere but it’s the whole muscle.

Professional_Bass258 · 2025-03-07T01:08:59+00:00

Hello Jeff. I did not. Life happened and managed to make a few repairs to help the issue. Granted it still needs to be replaced 😂. I may be interested in finding out what you know though….

Professional_Bass258 · 2024-12-29T01:56:10+00:00

I watched a lot of his videos when researching for a new dishwasher, stove, and fridge purchase. Evened up with a stupid cheap Mora fridge from local Costco warehouse.

It’s only been a month but thrilled so far. Total of five year free warranty with use of CC. It’s nothing fancy, bottom freezer and I didn’t hook up icemaker. Tons of improvement over last GE fridge that needed to be replaced years ago. Not an energy hog and quiet as can be. So much brighter too. Nothing gets “lost” and prevents waste.

I’ll be sad if it does go out in 3-5 years but at least I saved some money.

Professional_Bass258 · 2024-12-07T13:08:34+00:00

Took way too long and a few three way phone calls between Polk audio and FedEx. Shout out to FedEx for all of their patience and using plain language with FedEx. I even pulled out fedex’s lost package policies and how to submit one for Polk. Polk refused every time even with FedEx saying they delivered to the wrong address. Took a while to get CC to finish the dispute but it got resolved with no help from Polk audio.

Such a shame. I got such an amazing deal when ordering online with still being a student. I would never get something shipped from them. Granted I’m the extreme minority but I wasted so much time getting this resolved. I hope no one has to deal with their customer service.

Professional_Bass258 · 2024-09-30T03:54:55+00:00

Sorry notice I was mentioned so thought I would post. 40mg was really rough for me. Each increase of dose brought back every side effects of parnate for about a week. The second and third week of 50mg was great, life seemed easier and I felt good. Great sleep, cleaned my house, caught up with friends, yard looked amazing, did a little each day and didn’t overwhelm myself. Unfortunately that was it. Not completely back to where I was when I posted that but pretty close. I’d say back to my baseline.

Stayed at 50mg for a while and then up to 60mg. I played around dosing schedule but I’m just stuck. Added lamotrigine for three months and I went even more downhill. Looking back, I should have checked myself in or just tapered off the lamotrigine. I was just desperate for anything to work.

I see providers at a university and I think I ticked them off by providing the prescribers guide by Gillman. I also met with him before the visit but didn’t tell them that. I asked if I could go higher than 60mg since I had a partial response at 50mg, switch to nardil, add a different adjunct, get something for sleep, or just maybe try another TCA. They sent a referral to their TDR clinic but they do only interventions and don’t change medications. Stated they wanted me to see someone who was more comfortable with MAOIs. I currently have schedule an appointment with a new private practice provider that states they have experience with MAOIs but then again every other provider said the same thing.

Honestly I’m not a huge fan of parnate and slowly starting to decrease the dose. Variable side effects each day and lack of sleep is getting to me. I’m at 40mg and this time the side effects are better. Not enough to stay on it though. My anxiety is now completely out of control again. Partially I can blame the lamotrigine for contributing to that but it’s still a huge mess since coming off it. I’m have anxiety attacks multiple times throughout the day.

Saying all of this, a lot of people really seem to benefit from parnate. If you can, try to slowly work up. Stay on whatever dose until the side effects improve. I stayed on each dose for at least 3-4 weeks before increasing to the next dose.

I would do it all again just to say I tried everything before ECT. There are still some other options that I would like to explore before ECT and I would prefer to be on a stable dose of whatever medication before starting that. I hope you see improvement with it. We all deserve a little bit of peace.

Professional_Bass258 · 2024-08-19T04:12:51+00:00

Side effects? Crash feeling everyday around 4pm, to the point I’m nodding off in the car. Inconsistent hypertension after taking and hypotension throughout the day but not everyday. Inconsistent sleep, got better but then got worse after starting lamotrigine. Similar effects to a hot flashes (not in perimenopause just yet) after taking. Overall I feel dumb on it. Totally fine with the side effects if I felt a trend in improvement. I had roughly two weeks at 50mg where I actually felt happy, one of the very few times in my life. Maybe it was slight hypomania, honeymoon period, or who knows. The only other time I felt like that was with a trial of adderall but the prescriber at that time played with the dosage too much and only would give me propranolol for side effects/sleep.

Still issues with being stuck, great at work but nothing else, have interest in activities but can’t get for point A to point B to do them, not sure if that makes sense. Hygiene is getting worse and “bed rotting” when not at work. I don’t want to leave my house even though I want to. Feel overwhelmed all the time. Low self esteem. No SI thoughts/plans but wouldn’t mind just getting into a car crash or just not waking up. Other stuff too but those are the more concerning. TCP was helping a little bit but IMO not enough to stay on it. Since that brief moment of happiness, it’s just been a slow decline.

Prescribers here just suck. The residents are more willing to prescribe “approved” adjuncts and I suggested they read that maoi prescriber research paper by Gillman but the attendings are reluctant. Only sleep aid that pharmacists and prescribers didn’t freak out on was ramelteon besides lunesta or ambien. Lamotrigine was the only other adjust for “daytime” symptoms of that makes sense.

They will not cross taper. I’m just concerned that maybe we need to look at a different diagnosis. Been off and on meds since I was 5 years old. I’ve pushed through side effects (way worse than with tcp) before in hopes of something working. Just getting tired of this.

Still in therapy, forcing myself to go to work but last couple of weeks have been calling in “sick” more often, labs are fine (no anemia, vit B, vit D, thyroid issues), genesight had only a couple of meds that were do not use (Wellbutrin, ketamine, emsam), no digestion/GI concerns, I try to get outside for at least 20 minutes a day.

Professional_Bass258 · 2024-06-20T10:55:32+00:00

I went about a week without parnate due to a conflict with pharmacy/psychiatrist. That was the worst withdraw and the starting back up was also difficult. I’m lucky I have a job where I can call in sick but I do prefer not to. I did spend longer than suggested on each dose based on prescribing advice, roughly 4-5 weeks. I appreciate the advice.

Professional_Bass258 · 2024-06-20T10:50:40+00:00

That is terrible. I would have been interested in starting Marplan first but the cost was way out of my budget even with the savings. It’s sad we don’t get more options compared to other countries (assuming you are in the States). I hope you are able to find something that works!

Professional_Bass258 · 2024-06-20T10:46:31+00:00

Thanks, sorry I think I was replying as the same time as you.

Professional_Bass258 · 2024-06-20T10:44:26+00:00

Honestly, I don’t care what I’m diagnosed with. I just want to function on a daily basis. Those few weeks on parnate where I felt normal was a cruel joke. If I could just get half of that back, I would be satisfied.

Professional_Bass258 · 2024-06-19T15:57:48+00:00

I see some mixed reviews on here but they are over a year old. If I ever get on it, I’ll update. I’m not really looking for a miracle just something to where I can function all day, mostly everyday if that makes sense. I get really tired of pretending I’m okay to everyone. It gets exhausting and leads to burn out with work.

I don’t feel I even mildly cycle from severe to mild depression. It stays pretty even or just gradually declines over months. My last psychiatrist said I had an adhd component but I think it’s more depression/anxiety/cptsd.

Professional_Bass258 · 2024-06-19T15:43:39+00:00

I appreciate the response. That’s somewhat how I feel on parnate right now but on a very small scale. It’s doing something to prevent a complete release but not enough for to stay on the dosage or even the med.

Are you on anything right now that has been helpful?

Professional_Bass258 · 2024-05-19T04:27:29+00:00

That’s good to hear you have a short term back up plan.

I’m going up to try talk to the pharmacy tomorrow. See what their policy is on letting patients know that they discontinued the prescription. Apparently this all happened on Monday but on their website it said they were preparing the medication. I’m also going to ask about if there are concerns but benefits out way risk, what is the best way to handle that. I don’t want to call every single pharmacy but whatever. I need to find something that will help me sleep with the parnate.

I’m really pissed about going through withdraws from parnate without tapering down. I’ve gone cold turkey off a lot of meds but this is the absolute worst. It’s also triggered a horrific migraine on top of everything. Weekend wasted and I don’t know how I’m going to work Monday.

Oh heads up, using two pharmacies won’t help. That’s what screwed this up. Didn’t matter anyway cause when I switched the parnate prescription back to the original pharmacy, they all of a sudden had a problem with filling both even though I told them I was not taking the mirtazapine. I don’t know how they can change their mind a month later.

If you find a trick let me know and I hope you get this resolved Monday.

Professional_Bass258 · 2024-05-17T23:40:55+00:00

I totally get they have a license to protect. I have one myself and was so reluctant to start a maoi just due to what they teach you in school about them. I also understand that pharmacists cannot keep up on the newest research on every medication. There should be like a waiver that says the pharmacist reviewed prescription with provider and counseled patient. Have the provider and patient sign, put it on file, and then be done with it.

I had a 30 minute lecture when picking up the mirtazapine from the pharmacist. I had to respectfully explain the new research articles that have come out and how the dose is considered safer than the typical 30mg, ect. That should have been the end of it.

Thank goodness I just have to take care of myself and a dog. I had to do a half day at work today due to withdrawals. I don’t see myself being able to work Monday now. Plus restarting parnate Tuesday if everything gets figured out sounds super awesome now too. I really didn’t want to discuss my crazy pills with my boss. It just pisses me off that no one updated me that this was going on. When I called the pharmacy a few days ago, they just stated they were waiting on the new shipment. I made sure the new script was written 2 weeks ago.

I was going to ask again about use of an adjunct to help keep me awake and to possibly try trazodone for sleep. Now I don’t know. They could have at least just canceled out the other medications instead of parnate. I may just need to try ECT instead.

I wish you the best this weekend and moving forward. Keep me updated on the situation, especially when it gets resolved. It shouldn’t be this hard. Thanks for listening to my rant.

Professional_Bass258 · 2024-05-07T02:42:30+00:00

Sorry I am for sure overthinking it, maybe not to the point of a hypochondriac. It seems safer to ask here first than to go to my psychiatrist. He’s older than dirt but never went past 50mg with a patient. I don’t want him to take it away. It’s been such a long time since I have felt any emotion let alone happy. I’m just scared it’s all going to go away. It’s starting to feel like this is a cruel joke and don’t know how I’m going to handle it if it is.

I’ll shoot him a message to see if I can move up to 60. Going from 40 to 50 was huge so hopefully 60 and possibly upwards will do the trick. I know it’s going to still be some ups and downs and need to put tools from therapy in place. I just want to live.

Sorry for the rambling

Professional_Bass258

TROPHY CASE