Natops

Wow. I have been sick for 3 years... but have only developed chest pain since last November 2013. I had a chest CT scan - it came back negative. I had no ideal that others had the exact same kind of pain.

Anytime I am sick with a virus or cold - my symptoms are way worse... I'm betting my antibody count goes up as well because my immune system is on overdrive.

Your right Lmom. Just because you have these antibodies doesn't mean you have encephalitis ... I certainly don't think I have encephalitis... But from the research I done ... Many encephalitis patients share the same antibody (calcium channel n-type) I have ... Which is kind of scary.

Wow! That first link was so informative. Thank you for posting and sharing! All I do all day is study about paraneoplastic antibodies (because I have one). Thank you so much.

I have the antibody. I sent you a PM.

That’s my primary symptom. Bi-lateral - Leg cramps/pain in my feet, calves, and hamstrings. It’s part of my autoimmune channelopathy. 3 years…. And doctors really haven’t been able to help with any relief from the pain. Exercise helps a little but as soon as I rest the pain is back.

Hello. Have any of you tested positive for Nicotinic acetylcholine receptor antibodies? If so, what disease do you think you have or been dx with? What are your symptoms? Going through my old test Ive been tested for Acetylcholine Receptor Binding (three times) and AChR Ganglionic Neuronal AB (twice). All the times they have come back negative. Im going to check with my neurologist to see if these are the same or different then the Nicotinic Achr AB. I get confused on these different test !

I have POTS and paraneoplastic syndrome. You can PM me.

I recall scanning through my insurance statement from when I went to Rochester Mayo Neurology – This one consultation… it lasted for about 3 minutes…. The doctor gave me some test results… told me he didn’t know what to make of it… wrote me a script for some medicine…. That consultation - $700.

After a year and half of seeing almost 20 different doctors to find out what was wrong with me (unexplained body ache, fatigue and tachycardia)…. Dr Chemali found out what (paraneoplastic channelopathy) was wrong with me on my 2nd visit. I highly recommend him. I am very grateful to him. There’s nothing he can do for me… like many of us… but he has given me piece of mind that at least I know what is causing my illness. As mentioned above - He is a no none sense kind of guy. I always felt kind of rushed every time I saw him. My impression is – I think he is just very busy. Haha. But I am very happy I saw him. I found out about him on this forum.

I was just at Mayo Neurology MN last September. I was there to see a specialist about the specific antibody I have. Since I was there…. They wanted me to do the tilt table ...….which I did not mind. They said I did not demonstrate any POTS… which was weird because when I got a copy of my results…. (which I don’t mind sharing with you) … it kind of looks like POTS to me. Supine – 116/78 105 1 min - 120/98 119 5 min - 114/70 129 10 min 108/80 133 I thought anything over 120bpm after 10 minutes was considered POTS.

Um… yeah… you definitely want to be completely out if you are getting an endoscopy. I remember in 2003 I started to partially wake up during the tail end of my endoscopy…. It was kind of like a nightmare. I can still remember that choking feeling….

My neurologist referred me to her.... but for some reason.... she was not able to see me ....so I saw Dr Pittock.

I am fortunate enough that they did detect an antibody highly associated with neuro- autoimmunity. It’s enough to get my foot in the door to see top notch autoimmune specialist and try the treatments.. Well. Just speculating here… but it probably has something to do with the justification for the insurance co. The three (broad) main treatments for autoimmune disease (that are the least invasive) are – IVIG, IV steroids, and Plasma Exchange. IVIG is very very very expensive… so you would be lucky to get a doctor to prescribe that without a detected auto antibody. IV steroids is relatively cheap so a doctor would be more likely to run a short trail run to see if there is any positive response. Plasma Exchange can be somewhat invasive with the likely hood they would have to surgically attach a port to your chest or put a catheter in your chest. I’m going to try plasma exchange soon… and they are hoping to go just through my arms. If anyone here has had plasma exchange please share your experience…. Or PM me

Are you able to travel and see a specialist... (i.e. Mayo, Univ of Rochester NY, Cleveland Clinic)?

Well – Ive been screened for cancer twice in the last year (MRI, PET, CT scan) – it has all come back negative so far

Hey Alex, thanks for that video. That was the best paraneo antibody presentation that I've seen.

My diagnosis from Mayo – “THE FOLLOWING ANTIBODIES WERE IDENTIFIED: CALCIUM CHANNEL BINDING ANTIBODY,N-TYPE.THIS PROFILE, IN THE PROPER CLINICAL CONTEXT,WOULD SUPPORT NEUROLOGICAL AUTOIMMUNITY. A PARANEOPLASTIC BASIS SHOULD BE CONSIDERED, ACCORDING TO AGE,SEX,AND OTHER RISK FACTORS. TEST RESULT REFERENCE INTERVAL”

Last year - I bought an inversion table to act kind of like my own home tilt table test. I would lay flat for 10 minutes – then my wife would tilt me up (head up) and my heart rate would go up. I know it was not the real deal but I just wanted to see my heart rate go up without moving. Actually - lying flat or leaning back towards your head reduces your heart rate dramatically. The more inclined you are upside down – the less your heart beats…. At least that was the case for me. I found relief from tachycardia by just tilting back a little on it.

Well on the paraneoplastic panel - there are two calcium channel AB that are tested for -P/Q and N-type. P/Q has a very strong association with a disease called Lambert Eaton As the Mayo Clinic paraneoplastic specialist told me last month - N-type is usually a tag along antibody that is found in various diseases with autonomic problems including Lambert Eaton. I don't have Lambert. The Mayo doctors aren't sure exactly what I have. They admit while they are probably the leading experts...there still not much they know about the N-type AB. My symptoms. I have chronic body ache. It feels like I have the flu with a high fever. But I don't have a fever. My feet and legs hurt especially. I'm weak. I have tachycardia. Thats about it. It's barely debilating. I have a desk job... So I can still work. I'm just miserable. I look fine though. You see there can be neurological problems that are associated with cancer. The paraneoplastic panel is a good indicator to identify if your neurological issues could be cancer or tumor related. I get screened for cancer every 6 months .... So far negative. Which has lead my doctors to believe my antibodies are autoimmune in nature. The calcium AB have a high association with small cell lung cancer. This disease is what neurologist call channelopaties Specifically ion channelopaties. The n-type is found in the central and pheriphial nervous system. I've been dx with POTS ans small fiber neuro.

I'm not sure why it was so high that day. Usually it is 75 laying down.

I've had it done twice. I'm positive for calcium channel N-type antibody both times

I wear one of those heart rate watches and believe while I have POTS … It is probably a mild case of POTS compared to the rest of you…. While on my MEDS … I don’t usually go over 130-140 when walking up some stairs or taking my kids to the park. I just went to Mayo Rochester (Neurology) last month regarding my autoimmune syndrome. While I’ve already been dx with POTS on a tilt table last year – Mayo still ran me through their tilt table test which I didn’t mind. They said my results were normal even though they do not look normal to me and what my understanding of the definition of POTS is. My understanding of the definition of POTS - The hallmark symptom of POTS is an increase in heart rate from the supine to upright position of more than 30 beats per minute or to a heart rate greater than 120 beats per minute within 10 minutes of head up tilt. My Results: Supine 1 Min 5 Min 10 Min Bp (mmHg) 116/78 120/98 114/70 108/80 Pulse 105 119 129 133 So while I did not get the 30+ bmp (I got 28), I definitely went over the 120 bpm. The doctor told me it was normal. I didn’t really push him on it because it’s not like I need a dx of POTS…. POTS is actually lower on my concern list compared to my other symptoms – PAIN and WEAKNESS. So, am I missing something?

Yep, I do. I messaged you.

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