Natops

Well Dysautonomia, POTS, SFN, etc… these are all symptoms. What’s causing them (the underlying cause) is most probably a disease. We all probably have different causes/disease that are producing these similar symptoms (POTS, etc). Symptoms can have diagnosed codes and be treated. Just getting doctors to confirm our symptoms is challenging enough…Unfortunately for many people, finding out what the root cause is even harder and in many cases unattainable. Fortunately we have places like this site and Facebook to connect with each other and share information.

Your last post offered more knowledge then 20 neurologist over the last 4 years combined have ever offered me. I just take 600mg calcium supplement (carbonate) daily. Don't notice any help from it. Your lactic acid explanation is very interesting. My muscles constantly feel like I just did a major work out a few hours ago and that stiffness and pain is starting to kick in.... except in my case I didn't work out and they always feel like that. Interestingly the only relief to my muscle pain is going to the gym and doing a light weight lifting. Unfortunately I can't do much because I have POTS and exercise intolerance....but for about one hour after a light workout on the weigh machines my muscles feel almost normal for about an hour. Then the pain really hits me. Resting...waking up in the morning... is the worst. Hot baths and massage are the only relief but that is just for a few minutes. Do you think I should try the citrate calcium? Disclaimer - I am not a scientist... and I did not do well in school.

Pyruvic Acid = 0.1 Range – 0.3 – 0.7 MG/DL Lactic Acid = 0.7 Range – 0.5 – 2.2 MMOL/L Pyruvic Acid = 0.1 Range 0.3 – 0.7 mg/dl Lactic Acid = 7.9 Range 4.5 – 19.8 mg/dl Pyruvic Acid = 0.6 mg/dl Range 0.7-1.4 mg/dL I also have an autoimmune channelopathy which is causing all my problems (N-type Calcium Channel Antibody) Do you think this low pyruvic is what is causing our muscles to ache? Maybe I should try a Mitochondria Supplement. I am in so much chronic pain

I have low pyruvate level .01 but normal lactic. I have chronic burning/stiffness in my legs, feet, hands, arms - POTS and overall chronic fatigue. Pyruvate has been tested 3 times - all three times .01. Multiple doctors have said they don't think its significant. My question is - then why are you testing for it?

I just want to make clear that I am not giving you medical advise… as I don’t think that’s allowed on this forum…. Nevertheless (based upon my experience) I can make some observations based upon what you wrote and tell you what I would do if I had the same symptoms….Well, its completely possible that your symptoms could be due to an autoimmune condition. Lots of people here suffer from autoimmune disease. Your stomach sounds like Gastric Dismobility. Pain and tremors in your muscles, blured vision, migranes… there are autoimmune diseases that attack peoples ion channels that cause similar symptoms that your describe. Some notable ones that sound similar to this is potassium channel antibodies and calcium channel antibodies. Theres also many other receptor antibodies out there that can cause neurological dysfunction. If I suffered from those symptoms that would certainly be something I would discuss with a doctor as a possible cause.

You would think...I looked into it. There currently are no clinical trails in autoimmune antibodies and channelopathies at NIH Bethesda. If you ever see one.... let me know.

Thxs Katie. I've seen him before. What I have was beyond his capabilities and understanding.

Hi. If anyone knows any neurologist in the Maryland, DC, or Va area that specialize in autoimmune channelopaties, I would appreciate it. Jason

This is a great find !!!!

Ive suffered from chronic leg/feet muscle pain aches for 4 years. Its horrible. Its autoimmune in nature from a rare antibody (calcium channel antibody)

I've been that low before - I felt horrible!

Can't tell you how much I appreciate you posting this. This is what I suffer from. Calcium channel antibody that reduces my neurotransmitters. I'm going to study this very well. Thank you so much

You have got a referral.... but has Mayo accepted you? I know of people who had a negative experience. I was there two years ago (Rochester). After your initial consultation - you go back out to the waiting room and wait for your schedule. Your schedule list where and when all your test will be conducted. It is not unheard of…in fact it’s probably the norm… that your test could be spread out over a week in a half. No kidding. You could have your blood test on Monday… tilt table on Wednesday… sweat test on Thursday… and your follow up with the doctor next Tuesday. So be prepared to live out of the local hotels for a while. Who knows you could get lucky and all your consultation and test are done with in a day or two – I wouldn’t bank on that though. So they do give you the option to go sit stand by for a certain test or doctors appointment. That is no guarantee that you will be seen. I got lucky with a few standby tests. Not trying to sound like a negative nanny – I’m just relaying the realities of a Rochester Mayo visit. So it’s like you buy a one way ticket there cause you don’t know or can predict when you will leave.

I think many cases of POTS + neuropathy can be attributed to autoimmune diseases. Thats my case. There are others that have MCAS - you would have to check with them on if that causes neuropathy pain.

How long have you been on Hydroxychloroquine (Plaquenil)? Any side effects? Do you notice any reduction in pain or inflammation (that is if you suffer from any)?

My cardiologist recognized it.... Dr. Chemali (Norfolk Va) diagnosed me.

This article has a lot of great information. Thank You for posting!

I've tried low dose prednisone and high dose IV steroids. Neither gave me any problems or benefit. I felt nothing from them.

As far as B12 testing… from what I have read – just getting your B12 levels isn’t accurate enough… to fully check to see if there is a B-12 deficiency doctors run: B12 serum level holotranscobalamin+ (holoTC) methylmalonic acid* (MMA) homocysteine* (HCY) + holotranscobalamin (holoTC) is a newer test that measures "metabolically active B12", now available commercially.

Well…. There’s a few of us on this forum that have N-type AB and we are all kind of bewildered and confused on dealing with what it means. Obviously I don’t know what to tell you about your “top of normal range”. Mine was considered high (2012) - 0.38 H nmol/L <=0.03 and (2013) 0.45 H nmol/L <=0.03. This is a paraneoplastic antibody. . N-type AB has a high association with cancer (Small Cell Lung Cancer) – so… I would think that would be worth rechecking. I found a medical journal from Mayo on the statistical frequency of paraneoplastic antibodies – as far as N-type goes: http://clincancerres.aacrjournals.org/content/early/2014/05/14/1078-0432.CCR-14-0652.full.pdf+html It discusses the likelihood of specific autoantibodies to coexist. What autoantibodies cluster in reality vs hypothesized by chance which is kind of confusing to me on how they formulated their hypothesized values. Of the 78,889 patients tested, 9,183 (12%) had one or more neural autoantibodies: 7,592 (83%) had only one, 1,316 (14% ) had two, 213 (2.3%) had three, 52 (0.57%) had four, 9 (0.1%) had five and 1 (0.01%) had six. These observed frequencies exceed the frequencies hypothesized if clustering of autoantibodies occurred only by chance: 1,316 patients were observed with 2 neural autoantibodies, compared with 365 expected by chance; 213 patients were observed with 3 neural autoantibodies, compared with 10 expected by chance ; 62 patients were observed four or more autoantibodies, compared with 0 expected by chance The bottom line that I gathered from it as far as N-type Antibody: Out of that 78,889 889 patients (1.13%) had N-type Antibody. Out of that 889 patients 233 of them also tested positive for P/Q. (the most frequent co-existing AB) Out of those 889 patients 74 of them tested positive for VGKC (Potassium) antibody (the second most frequent co-existing AB) Out of those 889 patients 64 of them tested positive for striational AB. (the third most) As the Mayo clinic experts told me…. They are the subject matter experts on this antibody and they have more questions than answers in discussing it with me. There’s much they don’t know. The specialist told me this antibody is known as a “tag along” antibody…. It’s usually found with other antibodies – as stated above P/q is the most common and that is primarily found in Lambert Eaton Disease. I can’t locate an additional antibody…. It seems (so far) I have just N-type alone. Dysautonomia is a symptom of paraneoplastic antibodies. What are your symptoms? I have muscular pain throughout my body and I have POTS. I also have weakness. I think the take away is the association with cancer. A positive hit on a para antibody is complete justification for a CT scan

The causal effects of many antibodies can be identified – I wonder what the researchers think is the cause of these (adrenergic receptor) antibodies. Second – what is their recommendation for treatment?

I have a paraneoplastic antibody. So sorry for you and your son. I hope he is not in any pain. I can tell by your post and comments he is in good hands with you.

“Autonomic failure can occur when this autoimmune process causes sufficient damage to the autonomic nervous system. Limited data are available regarding the immune attack on preganglionic neurons or central autonomic pathways. Typical pathological changes include lymphocytic infiltrates[10] and vascular cuffing …..autonomic postganglionic and myenteric neurons can occur with antineuronal antibodies. The best understood syndromes involving paraneoplastic autonomic dysfunction are paraneoplastic autoimmune autonomic gangliopathy (AAG), paraneoplastic sensory neuropathy, paraneoplastic encephalomyeloneuropathy, and Lambert-Eaton myasthenic syndrome….. In Lambert-Eaton myasthenic syndrome (LEMS), antibodies against P/Q type voltage-gated calcium channels (VGCC) are present. These antibodies lead to impaired presynaptic calcium release at the neuromuscular junction, resulting in predominantly proximal muscle weakness. These antibodies not only block the voltage-gated calcium channels at the neuromuscular junction but also block them at parasympathetic and sympathetic nerve terminals, thus creating autonomic insufficiency and autonomic symptoms” http://emedicine.medscape.com/article/1156808-overview#a0104

Well if you have type of neuropathy or neurological issues associated with your POTS they will probably run the paraneoplastic panel on you.

My muscles are in chronic stiffness / pain. My doctors call it myalgia. It's chronic - everyday - all day. Legs/ feet ache with trigger points, stiffness and pain. Best guess cause - it's the autoimmune channelopathy I suffer from. Mine is a calcium channel AB. The AB - has a high association with POTs.