[QUOTE=Healthgirl;1115207][QUOTE=Diandra;1114973]Look into Lyme Disease as a possible cause. It is a poorly dx'ed and supported disease that for political and cost reasons is swept under the rug and there is MUCH controversy about it. The blood tests are terrible. Your dx has to be a "clinical" one, meaning the doc has to LISTEN to your symptoms and along with any supporting test data, make the dx that way. Also, when you get bit by a tick there are MANY illnesses you can get like Erlichia, Babesia, Tularemia and many docs NEVER look for them and people get treated for Lyme Disease but continue to suffer because they other illnesses go undetected and untreated. I wish you the best. I know how frustrating it is because doc today's want the most obvious dx, here's a script and out the door you go. You are smart to question your dx and treatment. I have learned, you have to become your own doctor and research all you can. All my best, Diandra

2 good resources...

dr Joseph burrascano treatment and guidelines for


Great book from Dr Richard Horowitz
His book is an excellent resource. I was dx'ed with Lyme Disease in 1990 after years of misdiagnose. I bought this book just last yr and learned a great deal.


Dr. Richard Horowitz’s recently published “Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease,” is #10 on the New York Times list of top-selling science books. Continue reading

Thank you Diandra,
I was actually treated for Lyme with one month of doxyclycline by an infectious disease dr. He decided to treat clinically even though my tests were negative (except for 2 igg strands). He said he feels that this is an inflammatory autoimmune process but gave me one month of antibiotics just in case. He said if it was lyme, I would feel significantly better, which I don't. I also know that for neurological lyme, that month of doxy might not even touch it, but I have no one else willing to treat in case it is. Looking back throughout the year I had many strange symptoms that I just explained away before this thing really took over. What a mess!
I read the Burrascano protocol, but haven't checked out that other book. I definitely will. Thanks!

Hi Healthgirl,
My Neurologist keeps telling me that my SFN symptoms are not an "autoimmune process" but yet she cant tell me why I have all these symptoms. My symptoms are similar to yours. I'm wondering if I tried an antibiotic if it would help.
I'm still on the 300 mgs Lyrica, which dont help. I plan on going off of it, but I've read W/D from Lyrica is bad!! That scares me. I left you my contact number, if you like, maybe we can help each other to try and figure this "thing" out. They tell me mine is Idiopathic.. Hope you feel better soon..
Marie

Your description of symptoms was exactly how my Autoimmune Autonomic Gangliopathy started....it took forever to diagnose. See a neuro, despite your elevated ANA. My ANA went thru the roof, but my ENA stayed negative. Back when mine started in 2004-5ish they didn't know as much about AAG as now. Rheumatologists generally don't due much unless that ENA is positive. It's possible that your elevated ANA is showing a connective tissue disease that goes with a neuropathy OR it could be that you have an autoimmune disease that is neurological, as AAG and AAG will cause everything you have mentioned and more. You can PM me for more info if you wish.

[QUOTE=Healthgirl;1114084]Any insight, personal stories, recommendations, would be appreciated.
I have been recently diagnosed with idiopathic small fiber neuropathy. A year ago I started having heart palpitations and strange buzzing surges that would happen in my upper torso to head just as I was about to fall asleep at night. The only other symptoms were orthostatic hypotension and foot and hand tingling and numbness from certain positions that would go away with moving around. I went and had my blood work done and everything checked out ok. Life was manageable so I just continued on. Over this summer I wasn't able to keep up with my interval strength training routine and was losing range of motion in my neck and shoulders. Shooting pains were happening from my shoulders to my hands randomly day and night. I thought it was due to my weight lifting so I decided to ease up on it and take some time off and switch to light aerobics. It continued to get worse but still wasn't that big of a deal until I woke up one morning in September and could not move my neck. My traps were in severe spasms. Since that day, my body has been ravaged. My arms and shoulders just hurt and fatigue from even folding a towel. Throughout the past four months I have been unable to much that requires my arms because of my neck and shoulders. I now have random shooting and pulsing pains everywhere and muscle twitches all over my body, buzzing feelings in my upper body and down left arm into hand. The low blood pressure has become worse. Some days are worse than others. Is there anyone out there with a similar story? I think the doctor is missing something and could care less what the cause is. I also have a high ANA and have been to a rheumatologist who doesn't know.

Hi Healthgirl,
My Neurologist keeps telling me that my SFN symptoms are not an "autoimmune process" but yet she cant tell me why I have all these symptoms. I'm curious what does an elevated ANA mean? Do you know or does anyone else know, if elevated ANA could explain any of your symptoms? My symptoms are similar to yours. I'm wondering if I tried an antibiotic if it would help.
I'm still on the 300 mgs Lyrica, which don't help. I plan on going off of it, but I've read W/D from Lyrica is bad!! That scares me. I left you my contact number, if you like, maybe we can help each other to try and figure this "thing" out. They tell me mine is Idiopathic.. Hope you feel better soon..
Marie

[QUOTE=cyclelops;1115963]Your description of symptoms was exactly how my Autoimmune Autonomic Gangliopathy started....it took forever to diagnose. See a neuro, despite your elevated ANA. My ANA went thru the roof, but my ENA stayed negative. Back when mine started in 2004-5ish they didn't know as much about AAG as now. Rheumatologists generally don't due much unless that ENA is positive. It's possible that your elevated ANA is showing a connective tissue disease that goes with a neuropathy OR it could be that you have an autoimmune disease that is neurological, as AAG and AAG will cause everything you have mentioned and more. You can PM me for more info if you wish.

Hi Cyclelops
How did they finally dx your AAG, why did it take so long? Do you have neuropathy, which kind? Could I have AAG and not know it, I wonder? I have Idiopathic SFN, after 3 years its still "unknown cause". All my bloodwork comes back "normal". Neuro-muscular doc tests my blood every 6mos -1 year.
If I had an elevated ANA , llike Healthgirl, wouldnt it show up? Sorry for all the questions. I'm still debilitated with painful sensations and have no answers. Even if they did find a cause, it probably wont be treatable. My question to self is , Aren't I better off not knowing if they cant "cure" it..?
Any comments or positive input (if possible) , would be great! Thanks!

--just so you'll all see them here, though we more often discuss this on the neuropathy part of Neurotalk--

1. There are certainly autoimmune origins of some small fiber neuropathies. Many of the anti-nuclear antibody conditions (i.e., lupus, Bechet's, polyartiritis, etc.) can have neuropathy, including small-fiber neuropathy, as a secondary effect. The Washington University Neuromuscular website has good summaries of these:

http://neuromuscular.wustl.edu/sensory-large+small.html

http://neuromuscular.wustl.edu/sensory-small.html

http://neuromuscular.wustl.edu/antibody/pnimax.html

2. If you are experiencing motor symptoms as well as sensory and autonomic ones, then by definition you have something beyond small-fiber involvement, and perhaps a more mixed type of fiber involvement. The small, unmyelinated fibers subsume the sensations of pain and temperature, and many autonomic functions; larger, myelinated fibers, include the sensory modalities of vibration, position, mechanical touch, and all motor functions, so motor symptoms imply some large fiber involvement.

HI Cyclelops,
Do you also have the neck and shoulder pain?