Natops

I was dx with sfn through qswart. The muscles in my feet and leg are in chronic pain/burning. I have been dx with autoimmune disease (Lambert Eaton)

Some POTS can go hand in hand with other neurological problems. I have constant bilateral feet/leg (I think its small fiber neuropathy) pain due to my autoimmune/neurological disease.

I take Mestinon. It helps my symptoms (POTS and SFN) about 30%. I had to take low dose at first because it was making me drowsy. Eventually I got use to it. Need to take it with food or I feel queasy.

@Elizabeth. Have you been diagnosed yet? Your symptoms sound very much like Lambert Eaton Syndrome (LEMS) to me. – Dry Mouth/eyes. Severe muscle weakness. Droopy eyelids makes me think of Lambert Eaton Syndrome. If you haven’t already you might want to find a neurologist who could order the Mayo’c Clinic Paraneoplastic Panel. In the Panel is the Calcium Channel (P/Q and N-type) Antibody test (among other important antibody test). LEMS is 95% diagnosable with a positive P/Q AB. I have leg muscle pain/weakness along with POTS. I had positive N-type. While I don’t fit the text book definition of LEMS, its close enough for my doctor to pursue treating me as such to see if my condition improves. The medicine for LEMS is 3,4 DAP. Its only available in clinical trials. My doctor is trying to get me into one. In the meantime, he recently put me on mestinon…. And my pain and weakness has reduced by 40%

Midodrine helped me. No side effects. Helped rid me of my dizziness.

My chronic bilateral leg pain is my chief symptom diminishing my quality of life…. Sitting and sleeping in bed only exacerbates the pain. I sit all day too at a desk. It’s a burning pain in my feet, calves, hamstring and butt. Sometimes getting out of bed it feels like I am walking barefoot on marbles. For a year and half I tried to find the cause through an extensive medical workup….countless doctors.. Finally I had - QSWART which detected Small Fiber Neuropathy SFN. SFN most probably associated with the positive calcium channel AB that I have. I am desperately looking for some relief to my neuropathic pain.

Thank You issie for the bump. Thanks Rama for posting it. Very informative.

Thanks Everybody. @Arizonagirl - They had me on Octagam. I handled it well till the last day which then I had diarrhea, nausiation, pain and stiffness in the neck and a pretty bad headache. The benadryl IV help calm all that down. I drank pletty of fluids. I think the benadryl and tylenol is a must. I'll try it again next month.

My blood pressure was/has always been on the low side. It was normally around 100/60. Sometimes when I felt really bad my BP was down to 80/40. Now that hydrate a lot and take meds...my BP will be around 107/70

Dr. Chemali. He is with Sentera Health out of Norfolk Va.

I believe the paraneoplastic panel is standard for Mayo Pots patients. Not sure who else in the country runs it. I’m sure someone on this site probably knows. As far as SFN not showing up on my tissue biopsy’s but it showed up on QSART... my doctor did explain to me how that was possible… what exactly he told me…I can’t remember exactly. Sorry. Again, perhaps someone on this site might have some insight.

Success being defined as diagnosing my rare disease. I’m going to make a long story short: For a year and half I suffered from chronic bilateral leg pain/stiffness/weakness with fatigue/dizziness and tachycardia. I saw over a dozen doctors (even some from NIH and John Hopkins) who conducted a significant work up (countless blood work drawn, EMGs x 2, Spinal tap, MRIs from head to toe, leg skin biopsy for peripheral neuropathy, CT scan of abdomen and pelvis, X-ray (chest), ultrasound of the abdomen and an endoscopy) on me. They found nothing wrong. NOTHING! Then in May 2012 my tachycardia and dizziness left me bed ridden. My feet were turning blue. I sought the care of a cardiologist who believed I was suffering from POTS. Flusrocortisone, Midorine, compression stocks and lots of fluids got me back on me feet to just barely get by. So it was this website DINET that I saw a member post info on a doctor in her area that specializes in POTS. He was a neurologist. Well it was only 3-4 hours away from me so I made an appointment with him. It was probably one of the smartest decisions I have ever made and it possible will save my life. First off – he clinically diagnosed me with POTS in his autonomic lab. I failed the tilt table with 30+ bmp and it was discovered through the QSART that I have small fiber neuropathy. Most important – the cause. What no doctor even ran. The Mayo clinic’s paraneoplatic panel. It was discovered that I was positive for Calcium Channel N-type AB. 10x higher than normal range. Finally there was an answer. Calcium Channel N-type AB. Mostly associated with a disease called Lambert-Eaton Syndrome (LEMS). LEMS http://www.lems.com/overview - is a disorder of the neuromuscular junction. The neuromuscular junction is the site where nerve cells meet muscle cells and help activate the muscles. LEMS occurs when antibodies interfere with impulses between the nerve and muscle cells. It may be associated with other autoimmune diseases, or more commonly coincide with or precede a diagnosis of cancer such as small cell lung cancer. LEMS is an autoimmune disorder. This means that antibodies similar to those which normally help to fight infections have started to attack the body. In LEMS, these antibodies attack the ends of the nerves at muscles and stop them from releasing acetylcholine, a messenger that tells muscles what to do. About half of people have a cancer, the majority of whom have a "small cell" lung cancer (SCLC), which mainly happens in people who smoke. In this type of LEMS the antibodies start by attacking the cancer and then get "confused" and attack the nerves as well. This type usually starts when patients are over 50 years old. This form of LEMS is referred to as paraneoplastic LEMS In other people, there is no tumour and this type of LEMS usually starts after the age of 50 but it can start in children under the age of 10. Doctors are not sure why the antibodies start to attack the nerves in this type of LEMS. This form of LEMS is referred to as non-paraneoplastic LEMS So I was screened for cancer (PET/CT/X-ray/and MRI) with negative results. That’s not to say I won’t develop it later. I have to be screen every 6 months for the next few years. Right now we are approaching this as non-paraneoplatic LEMS. I just finished my first treatment of 5 days straight of IVIG. Initial findings… the pain/weakness in my legs has reduced by about 30-50%. I haven’t yet discussed with my doctors if and when I should stop taking my Flusrocortisone and Midorine concerning my POTS. Hopefully it’s not cancer. I probably will never be that healthy person that I use to be (running/athletic). I just want to be able to continue to work and take care of my family. I share my story in hopes to help those of you who are discouraged with not getting any answers for your medical problem. Many doctors just sent me on my way with nothing more than a “good luck”. One doctor actually told me he would not run a certain lab or try to find out what’s wrong if he knew he was unable to treat it. That blew my mind. I really fell into deep depression when one doctor wanted to just treat me with anti-depression medicine and “bio-feedback”. If your tests keep coming up negative…. Don’t give up. You have to find that right doctor and you have to do your own research. I do consider myself lucky. One thing leads to another. I am probably not at the end of uncovering my problems…. But at least I’m on the right track.

Quick Summary about me – since May 2011 I have suffer from acute bilateral leg pain/burning with chronic fatigue. In April/May 2012 I experienced POTS like symptoms – tachycardia 30+ when standing, blood pooling in both feet, crippling dizziness. Fludrocortisone 0.1 mg a day, Midodrine, compression socks, and a gallon of Gatorade a day stabilized my POTS symptoms but I still suffer from bilateral leg burning and chronic fatigue. So I have had every blood test you can think of – all show normal, except one. I got the results in an email last week…. I don’t see the doctor about it till the end of the month. It said my Pyruvic Acid was 0 .1 out of range of 0.3-0.7 MG/DL Is that significant? Does anybody know anything about Pyruvic Acid blood test?

Nuun is a good

@Wendy - Im on Florinef as well. Could be that.

Thank You for posting.

I’ve had heavy sinus pressure (with no mucus) for just about the same time that I have been on midodrine. Anyone else experience this?

Last year (May 2011) I went from a healthy runner who ran 10 miles a week and went to the gym twice a week to feeling like I was 80 years old. It came on feeling like I had the flu (body ache without the fever or sneezing). I just had that achy body feeling. A few weeks later both my legs were always stiff (down my hamstring and calf to my feet) and numb like. No inflammation or swelling. Needless to say – I was under the umbrella of exercise intolerance. My legs would be extremely heavy after a short walk. To this day I am the same way. As the months have gone by my fatigue, body ache, and leg stiffness has gotten worse. Today both my feet and legs are very stiff and achy. It always feels the worst in the morning – especially when I get out of bed. To temporarily reduce my body ache and fatigue I will do some real light exercise (jumping jacks/squats/ arm rotations) for just a few minutes. This will reduce my aching from about a 7 to a 4. Around November 2011 the postural dizziness started to kick in and has progressively gotten worse since. An ENT says he noticed I have slight nystagmus. I’ve spent the last year visiting over a dozen doctors (primary care, neuro, rheum, endo). Tons of blood work done on me. EMGs x 2, Spinal tap, MRIs from head to toe, leg skin biopsy for perph neuro, CT scan of stomach, X-ray (chest), ultrasound of the abdomen and an endoscopy could not point the doctors even in the right direction to help find a diagnosis. The only think of great significant – at time of onset – my liver enzymes were very high for about a month. They then returned to normal (July 2011). Plus – my blood work shows I am somewhat anemic. In the last months (April/May 2012) I have developed some new concrete symptoms which I went to have checked with my local cardiologist. I went out and bought one of those fancy automatic blood pressure machines. Since I felt my worst in the morning getting out of bed, I started to take and record my blood pressure laying down in bed and then getting out of bed (after 3 mins). For 30 days I have done it. The typical average results were: Laying down 100/60 pulse 65 Stand up (3 min) 102/76 pulse 110 So on average my pulse would increase 30+ bpm upon standing. Another new significant symptom was my feet started to turn blue just from sitting or standing for a few minutes. I was laid up in bed with crippling fatigues and dizziness. My cardiologist did a full work up on me to rule out and physical cardiology problems (Echography, Stress test, Ultrasound of artery and heart). The cardiologist says he thinks I may have POTS based upon my 30+ bpm, blue feet, dizziness, and overwhelming fatigue. So no TTT or super high pulse. He started treating me first with Midorine (5mg) 3 x a day. I still felt pretty bad so he told me to double the dose – (5mg) 6 x a day. He put me on compression socks. The socks do help prevent my feet from turning blue. He told me to drink 4 litter of Gatorade a day. He then put me on flusrocortisone 0.1 mg a day. Those things stabilized my dizziness so I was able to work. I do feel slightly better. I’m not as dizzy. I just have to be careful not to over exert myself. He then added BB. I felt really bad from that and quickly got off. I’m not completely convinced that I have true POTS. The increase in my pulse (tachycardia) could be due to the pain I feel in my legs upon standing and not the postural. Does this sound like a neurological disorder to you? Any ideals on what this could be?

About 5 days ago I started Metoprolol and I felt absolutely horrible. I was laid up in bed. My cardiologist told me to stop it. I feel much better now. Whewwww, that was scary.