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.

Hello and welcome to the NeuroTalk Support Groups.

I'm sorry you're in so much pain.

I see you've found the
PN forum

There is a lot of very helpful information and also a thread of useful websites in the "Sticky" posts at the top of that forum.

There's also the PN subforum

PN Tips, Resources, Supplements & Other Treatments

Welcome Healthgirl.

Hello and welcome, happy to see you have come to be with us, it a great place to be. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[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,
I'm sorry to hear your going through so much suffering. I was also dx with I-small fiber neuropathy. Your symptoms started a little different then mine, which started back in 3/2011. I was also active and ate healthy. Out of the blue I was getting pins and needles in both calves and burning under my feet. I also had tons of tests (bloodwork, MRIS-Brain & spine, EMG/NCS, more bloodwork) that all checked out good. My SFN was dx by a punch skin Biopsy done by a Neuro/muscular Neurologist. It has since progressed to my arms and hands, torso, scalp, face,mouth...I have it widespread. I had/have every symptom of sfn. (tingling, buzzing, stabbing, lancing, sensitive hands, burning feet, hot-spots all over my body, etc) My shooting pain is in my legs and feet. I also get the "surges of buzzing in my upper body" like you do. Its so bad I can hear it in my ears and head. ( I never had tinnitus before this happen to me)!
I do not have orthostatic hypotension, or any other autonomic symptoms, (except for occasional over-heated feelings when I feel the burning I get up and down my legs). How low does your blood pressure get? How did you get your sfn diagnosis? Did your Doctor/Neurologist send you for a Skin Biopsy? I feel for you. I know how debilitating the pain and symptoms of this dreaded disease can get. Are you taking any medication(s)? I take 350 mgs Lyrica, Tramadol for break-thru pain, (which don't help) and Klonopin for anxiety caused by the pain. I tried all the B Vitamins, supplements, nothing worked for me, but it doesn't mean they can't help you. My life has not been the same since this started. And yes, some days are much worse then others. I would like to talk to you privately about your tingling and buzzing if that's ok? The "surges of buzzing" and burning are my worst two problems now. I feel like my Doctor(s) are missing something and just don't care anymore. I'm still searching for a "cause". I still can not except Idiopathic! Take care..
Marie

[QUOTE=Marie33;1114271]HI Marie,
I am not taking anything regularly yet. When it gets unbearable I take pain and muscle spasm relief which helps calm it down some. I am determined to find a cause and get the proper treatment before I go on daily symptom drugs. Right now I prefer to feel what is going on until I can't take it. I have tried B's and many holistic treatments to no avail. I wish it was that simple for all of us. I am terrified of the possibility of being on daily meds that just cover up symptoms of something attacking me! If thats what I have to do, when the time comes I would though. I have a prescription for daily nortriptyline and tramadol which I have not tried yet. Does the tramadol help at all?
There is absolutely a cause for this and after having been through a few neurologists, 2 rheumatologists, and a few other doctors, I am trying to stay positive that I just haven't found the one that wants to "think"! I was even told by a columbia spine surgeon that I have to keep searching till I find the doctor who wants to figure this out and maybe treat me with immune suppressive drugs to stop this process. He said that the medical world is all about money. Time is money. Thought and effort require time so they are quick to push us out to fill up as many time slots as possible. Idiopathic is so easy for them to say. That is not a diagnosis. I already knew my nervous system was being wrecked. It was completely obvious. All this dr. did was punch biopsies and sent it to a lab after spending 5 minutes with me. Needless to say, she is not the doctor for me. She was nothing more than a technician. She said maybe a virus, maybe autoimmune.... try a rheumatologist.
The low blood pressure makes me dizzy a lot and I have to stand very slowly and sometimes get back down. It causes disorientation and agitation. Pretty miserable and hard to take when I was so high energy. I don't know what the numbers are but they told me it was from my autonomic nervous system. I am on a waiting list for the autonomic testing in Feb. to see how bad it is.
Have you tried a gluten free diet?
Ill try to pm you. Im just figuring out how to use this sight.

Some of your symptoms sound like they could be coming from thoracic outlet syndrome (TOS), which would mean there is nerve compression in the brachial plexus and/or your eighth cervical or first thoracic nerve, and/or vascular compression in your subclavian blood vessels. A lot of weightlifters have this problem, which is part of the reason your post caught my eye.

TOS can be very difficult to diagnose. Many doctors are unfamiliar with it, some do not "believe" in it, and there is no one scientific test to rule it in or out, usually. Your best bet would be to consult a top TOS specialist like Dr. Donahue at Mass General in Boston. If you go to the TOS forum and check out the Drs. and PTs listed in the sticky thread at the top - or do a forum search, for more current info - you will find other TOS docs who may be closer to you. (Sorry, I'd post the link up here for you if I knew how to do that… but I'm pretty remedial when it comes to computer stuff! )

There's a ton of info and links to medical literature on TOS, useful therapy modalities, etc. captured in the other sticky threads, if you want to do a little research - or just browse the threads in the TOS forum for a bit, see if anything resonates with you.

Hope you find the answers you are looking for and are on the mend soon!

Alison

Thank you SeaPines,
I definitely do think there is some type of deep injury that has developed from repetitive use. I noticed throughout the year that it kept getting harder to do exercises with my arms over head. They would fatigue and my hands would get weird. I would have to move in alternate ways during workouts as to alleviate the strange discomfort and dizziness that would come from certain arm positions. Also, it is so much worse in my left side. As this continued to get worse so did my numbness and problems in my legs and feet and my blood pressure upon standing and moving.
I have been in Columbia Presbyterian hospital and seen by their team of neoros and they just say it is some type of inflammatory autoimmune neurologic process and sent me on my way for followups and symptom meds.
Thanks for the info. I will definitely bring this up and read more about it to ask if its a possibility.

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

http://www.ilads.org/lyme/B_guidelines_12_17_08.pdf

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.

http://lymedisease.org/news/lyme_dis...-horowitz.html

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 → - See more at: http://lymedisease.org/news/tag/dr-r....myhntogH.dpuf

[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!