Anyone here ever see an endocrinologist?

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Anyone here ever see an endocrinologist?

Postby amy_twitch on June 18th, 2004, 12:57 pm

With all of us getting the same 'benign' diagnosis from so many different neuros....I'm just wondering if we're all barking up the wrong tree.

-Yes, this thing could possibly be linked to anxiety/stress.

-Anxiety/stress changes different hormone levels in our bodies.

-ALSO, our bodies can produce hormonal changes that cause anxiety/stress symptoms. (meaning the anxiety can have a biological origin in the first place.

-Think of this as the 'which came first, the chicken or the egg?' scenario. Did we have stress first which threw off our bodies' hormonal chemistry, or did our bodily chemistry get thrown off first, causing our anxiety? I'm guessing it's a vicious combination of the two--regardless of what happened first.

-By hormonal, I don't just mean sex hormones that cause moodiness in us females....rather, all the hormones produced by the adrenal glands in the body.

My primary care doc wants me to see a third neuro (to drill this BFS into my head once and for all)....but after being here on this board for a week now, I firmly do NOT think I ever need to see another neuro.

All of you, do me a favor, and type in "thyroid twitch" on your web browsers. There's some really interesting info. Also look up information on the parathyroid glands. I'm starting to believe that hormonal changes are a HUGE piece to this puzzle...especially since so many women get this BFS in our thirties, after having children. We just seem to be prime candidates for hormone fluctuations. Men are not excluded, but the hormonal basis lends more evidence as to why women seem to suffer more frequently.

Look up some information on Chronic Fatigue Syndrom and Fibromyalgia too....I think BFS could be another subset of these types of syndromes that have no 'miraculous blood test' that states: "this is exactly what you have, and this is exactly WHY you have it". We may never know....

I am going to talk to my regular doctor about foregoing the third neurologis and ask to be referred to an endocrinologist instead. These doctors, I believe, take much more time in evaluating hormone levels in the blood. Just because my PCP ran one simple TSH test to check my thyroid does NOT necessarily mean that my thyroid is perfectly fine....plus my PCP has never ran tests to check my other adrenal gland function. All hormones in our bodies fluctuate--so one test isn't always an accurate predictor of what's really going on.

Simply, the more I read about endocrinology, the more I think it's worth looking into....fatigue, palpitations, muscle twitching/spasms, etc etc....all the symptoms are there with adrenal problems. Some cases of hormonal imbalance are very cut-and-dry....and others may be more subtle.

Sorry for this long post, I am just truly getting to a place where I don't think we need keep prodding our neuros to re-assure us we have BFS and nothing else. This is all they will do. They will never help us search for 'why' this is happening to us other than suggest stress/anxiety.

An endocrinologist might find some hormone imbalances that can be corrected....which might then stop wreaking havoc on our nervous system (or our muscles).

Do we all need to mentally work on anxiety? Yes, absolutely. Do we owe it to ourselves to see if there's a biological cause/effect to our anxiety (chicken-and-egg scenario above)? Yes, we do!

I personally think it's not too far fetched to seek help from an endocrinologist---they might find something no other doctor has, simply because it's the nature of their practice to delve a little deeper into various blood tests. If nothing abnormal is found, then like I said, this BFS is probably some variant of Chronic Fatigue or Fibromyalgia....those lovely diagnoses based on 'exclusion'.

If anyone here has ever seen an endocrinologist, please share your experience. For me, I think it's a worthwhile pursuit because I already have a positive ANA blood test, and the endo might dig deeper to see exactly what is causing the positive ANA (there are tests that can be done, but my PCP doesn't run them....have to see a rheumatologist or endocrinologist first....so that's what I want to do).

Thanks all! Keep smiling :D
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Postby garym on June 18th, 2004, 1:15 pm

Amy,

I think that you may be on the right track for some of the members on this board. I personally believe that there are probably several different causes of BFS. One thing I will say is that after my last emg, the dr. at Baylor College of Med. that did the exam asked if I had had my thyroid checked. Said also to have my metabolic functions checked ( I don't really know what that means exactly). I'm so tired of seeing drs. that I haven't followed up with an endocrinologist yet, but that may be my next step.

Keep us informed if you do see an endo.

Take care,

Gary
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Postby speg on June 18th, 2004, 2:32 pm

Amy,

My twiching started up a few months after a miscarriage. I'm also experiencing hair loss which can be indicative of a thyroid/hormonal imbalance. I do think there are many causes of BFS, and I plan to have my hormones and thyroid tested in August.

I've also read where dehydration and/or vitamin deficiencies can cause it. I also have popping joints which can also be indicative of dehydration and or deficiencies. (My x-rays were normal.)

Further, I just lost alot of weight on Atkins. Several folks here said their BFS began after Atkins . . . this could also explain my hair loss. And a PT told me that substantial weight loss can cause . . . TWITCHING SENSATIONS cause the muscles are contracting back to their original size after being stretched out.

So, there are many possibilities for me . . . including stress.

Peg
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To Amy

Postby SLL on June 18th, 2004, 4:49 pm

I agree...as you know I just posted that I went to a new neuro who for the first time mentioned metabolic imbalances and with one look saw a "benign" skin condition I have and felt they were linked. You are right - we keep going to neuros and they keep assuring us it is benign twitches...and that is what we get. Not much of a fix.

I was thinking the same thing, too. I am actually in the middle of a move to NYC and I have booked to go to another specialist there in about 6 weeks to start this investigation.

thanks!
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Postby amy_twitch on June 18th, 2004, 5:38 pm

Okay!!! It's nice to see that a couple different people here have had their neurologists suggest metabolic imbalances--and not assume anxiety is the root cause. (not that it doesn't play it's part).

I'm almost positive the endocrinologist is the right doctor for metabolic imbalance...as I believe this is dictated by the hormone producing glands (thyroid, parathyroid, adrenals etc).

By the way, who coined the term "benign fasiculation syndrome"....was it the neurologists?? This makes sense because they are only relating the condition to the nervous system. Could be that doctors who specialize in hormones and metabolic processes will find a different 'term' for what is going on with our bodies.

I hope more posts come in! Thanks to those of you who'e provided feedback thus far.

Amy
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Postby puggriffey on June 19th, 2004, 8:56 am

I don't want to pur water on this - I agree with the post that speculated that the underlying cause for this is going to vary greatly from person to person. Just want to provide some relevant first hand experience...

I went through the same thought process as yours not too long ago...I am a person who NEEDS to be able to land on a definitive, LOGICAL conclusion for things I can't understand or control (at least that's what my therapist used to tell me! : ) )

I went to a specialized endicrinolgist (I obviously don't have the same obsession over spelling), and we ran the full gambit of tests and examinations, up and down, backwards and forwards. Guess what - all normal. And PS, even though what you read on the net seems to spell out the EXACT symptoms we all experience and open up new doors of possible explanation to what we are feeling, imagine my disappointment when this highly specialized endocrinologist at the Mayo Center confirms to me that hormonal imbalances DO present with these symptoms, but they present in patterns and syndromes that are unique to that subset of problems (subtle as they may be), and that my condition was much more likely triggered by...you guessed it...aggressive lifestyle choices and extrnal stressors (I travel for work over half the year - 200 flights last year; poor sleep periods; newborn son; 70 hour work weeks; mom/dad separated, etc.) that are taxing the musculoskeletal balance and endurance capabilities. Plain and simple - black and white - right there on my report.

I was also given some closing feedback that was as immensely valuable to my recovery (knock on wood, so far so good!!) as finding this site was in the darkest days...I made a special trip up to Mayo to "put this thing to rest" for good (it is close to my parents' home in MN) and see the best docs I could find. They cautioned me on two fronts - one, there is a growing bed of physical, mental and physiological symptoms, caused by the growing stress in our environment and an increasing "wealth" of knowledge available to the lay person in health-related matters that cannot and will not attribute to any physical factor or definitive cause. Call it stress/anxiety, call it what you will - there are more 33 year olds in specialists' offices checking out "fatal" symptoms today than ever before by far...despite increasing barriers caused by health care rules/regs. Our symptoms ARE real, no question - but there are no easy or definitive answers coming, because no definitive tests or lab results can be performed to prove to us that we are simply overtaxing our bodies.

The second piece of caution was a good one for me to hear...lab work especially, but also examinations, diagnostics, evaluations, etc. all run a high risk of turning up false positives eventually, if we seek second, third, fourth and yes fifth opinions on things. When I had stomach pains way back, I simply couldn't accept a hasty IBS diagnosis (isn't that just pretty much the "stress/anxiety" diagnosis of the gastrointestinal world??!) when I was sure something more systemic MUST be causing this abnormal sensation/pain. Four specialists later finally turned up the answer I had been looking for - there ARE cases where pre-cancerous polyps can....yada, yada, yada. Botom line, several awful tests, weeks of panic, etc. turned up a big fat zero. Ten years later, I get those pains, then comes the bloating/cramps, then regurg., then...yup, you guessed it - CLASSIC IBS. Just ask the millions of people who turn up high ALT readings for the first time if the words "liver disease" ever crossed their minds at least once. I guess I fear that we run the risk of setting ourselves up for a whole new world of possible scary stuff if we keep digging for new explanations for our symptoms, once diagnosed.

Moral of story? Go check out your concerns until you get comfortable that you've explored what seems reasonable to you. I would never discourage that. However, go in with a realistic attitude that you may not get the answers you are seeking, because in the end, it may only be accpetance of a seemingly illogical, open-ended "stress/anxiety" diagnosis that will help many of the folks on here gain true "recovery" and piece of mind. Despite months of convincing myself that stress/anxiety was too easy and was not carefully studied enough, I have only made real progress in getting better (I had a twitch free day yesterday!!! Imagine THAT!) when I gave my brain/body a break and accepted the reality that I've lived a life of sending A+ voltage through a frame built to run on C batteries (an analogy my PT gave me once that crystalized this whole thing for me in a humorous and logical way I could understand!! Hoorah!)

Not every answer is always right for all or even most, but I hope it helps just hearing about it.

JG

PS: to my PT - I think I'm at LEAST a B- frame, no??!
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JG---great post...

Postby amy_twitch on June 20th, 2004, 12:54 am

JG (puggriffey),
Thanks so much for the post. It's good to hear your experience. I confess that while I'd love to find an answer for what's causing my 'bfs', I admit I won't be surprised if my endocrine pursuit results in a 'normal' diagnosis.

My main personal justification for wanting to look this direction is because of my postive ANA test. It could also turn out that I have two separate conditions, and fixing one may not do a darn thing to fix the other.

I like your approach to this condition and to life. I can tell you've been dealing with this beast for a while.

I also really like your PT's analogy. From reading this board, I can tell a LOT of us here are exactly the same way.

I notice that most posts on this board are knowledgable and very well written, indicating a lot of intelligent (and probably borderline perfectionist types) are among us. We are thinkers...and we probably think too deep for our own good, right???

Lots of us have kids....which is in-and-of-itself a huge life changing experience. I bet a lot of us not only worry about our kids, but also worry about ourselves more than ever....simply because we want to make sure we're around to raise and nurture them.

Interestingly, my neuro asked me point-blank: "Do you stay home with your kids?" (my reply: yes) and then she said: "Maybe you should consider going back to work....not because I think the kids are causing you stress, but because you need an outlet for your mind."

She could be right. I do crave time when I can utilize my mind. I went to college, and I worked for six years before I had my boys. I didn't start twitching until after my second child. So, basically, while I like to think I maintain good control, my life is a mix of joy and worry....with no mental outlet to keep my mind occupied for a stretch of time during the days. Of course, I'm not stating that raising kids is mindless (it's the most rewarding and most important job ever). There's just a big difference in lifestyle between working and staying home (trading executive meetings for Barney, you know??)

I do intend to stay home until my kids are all in school, but I don't doubt that the lifestyle change might have affected me.

Funny enough, I do the newspaper crossword every morning for some non-teletubby mind stimulation....and I don't think I ever twitch when I do it. (or I'm not noticing it). When I spend time talking with or going out with friends...hardly twitch. Read a good book at night...hardly any twitching. Keeping busy with my kids...hardly any. Sitting home for long periods and contemplating too much....twitch twitch twitch. Humm??? Pattern here?

JG, sounds like you're tackling a heck of a lifestyle with the job, travel, kids etc. That's a lot of pressure (mentally and physically)...and like your PT said...too much voltage going on. We all need outlets! Heck, if California has another power crisis, they could plug into this board.

Bottom line, life balance is a tough cookie...especially for everyone on this board. We're all smart enough to know better, but we let anxiety get the best of us at times (I'd surmise this is the case for ALL of us, BFS or not). The crappy part about anxiety is that it's not so easy to recognize--and VERY easy to deny. You can have the same personality for thirty years...then suddenly one day you wake up twitching. What's that about?? I'm still coming to grips with the fact that I DO have a certain level of anxiety....and probably always had, since it runs heavily in my family. I just never knew it until it decided to manifest itself physically in my body. So far, I'm avoiding the SSRI's...tried em for a couple days and hated every second. Minimal xanax helps me out (and I'm talking half a pill only once a month--if that) if I feel an anxiety attack coming on. I'd like to stay free of medicines...another perfectionist trait eh? However, if they can come up with one that eliminates these twitches, without any addicitve qualities and NO SSRI-type side effects....I'm game for trying it out. I know I'm dreaming there!!

Anyway, keep the good posts coming. You're a very good voice of reason on this board!

Amy
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Postby garym on June 20th, 2004, 10:43 am

Amy,

Along those same lines, the last neuro I saw at the MDA/AlS clinic at Baylor College of med. said that patients with a high level of intelligence are the hardest to convince that they have bfs.

I couldn't figure out why I had such a hard time then :D !

Gary
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Postby puggriffey on June 20th, 2004, 8:40 pm

Amy-

Thanks for the kind post. That was really nice.

Your whole message, especially the last paragraph, was SO true and very much in tune with what I think too. You know, I really always equated "anxiety" with that knot in the pit of your stomach feeling and general uneasiness that I've experienced from time to time. So, if I don't feel that, and have no "dread", I'm relaxed right?

Now, with a little perspective and a look back, it's pretty easy to see that those sleepless nights working or taking care of infant children don't come free. Those adrenaline rushes to prep for a critical presentation or meet a big deadline DO engage the central nervous system. Constantly thinking two steps ahead of your next move, be it at home trying to be the best parent you can be, or at the office mutli-tasking like a fiend, means your brain is filled with sensory impulses, "noise" and triggered responses almost every minute of every day - constantly. This IS stress - even for those of us who feel better denying our weaknesses.

I did that intentionally, by the way. I now know stress/anxiety and mental fatigue AREN'T weaknesses at all. There are far too many of us who have fallen victim to thinking stress/anxiety are things we can control and giving in to it is a sign of mental weakness. Wrong. Every person every day encounters stress - more and more in huge doses. It's how we respond to it, recognize it, and train ourselves to KNOW OUR LIMITATIONS that separate out the B type personalities from the A's. I've lived 34 years convinced I have NO limitations, and the key to being a good husband, father, professional, etc. is "paying your dues", being strong during the rough times, and working hard to secure your family's future - financially, spiritually, etc. Now I'm paying for that go at all costs attitude, and I suspect many of my friends on this board are too. There's nothing wrong with us - in fact, when my neuro reminded me that the unlucky ones never have their bodies send even a signal until the A+ voltage causes something serious to go wrong, I really was startled "awake" - stop feeling down because your knee looks like Jell-O all the time, just accept what your body is trying to say! Now that I've accepted the twitches as a sort of friendly "reminder" and acknowledged that my body was trying to tell me something, I've been blessed with two straight twitch free days! (no, there's no miracle cure - just really becoming convinced that understanding the power of the mind and accepting the needs/messages of the body as it ages will put many of us in a much better place).

I was blessed - great doctors, good communication from and BETWEEN them throughout this experience, successful test results, supportive family, access to physical therapy, etc. I had it easy. I share still with this board because I believe just hearing a pattern of success and hope sometimes is all people really need to shake the "funk" and start building a foundation. I loved your post Amy because I hear/see a lot of that in your approach to this - and you're a lot less further along (timewise) than me. We all have days - I may have a doozy tomorrow, who knows? - where we feel anything but lucky with this stuff, but believe me, if these are the crosses we've been given to bear, we are truly, truly fortunate.

Smile when you take care of those kids tomorrow - and good luck on 7 across!!

JG
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Postby puggriffey on June 20th, 2004, 8:47 pm

"We are thinkers...and probably think too much for our own good, right???!"

No truer words ever spoken (and yes, I did stop to think if "truer" was really a word...BLECH!).

JG
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Hi all

Postby amy_twitch on June 21st, 2004, 5:28 pm

This has been some fun conversation! Thanks for the great posts, and also thanks again for the awesome moral support! I've been twitching a little less the past few days (my recent hot-spot between my left thumb and forefinger is finally calming down). Hope another one doesn't pop up soon...but if it does, I'll be able to handle it, no problem.

Amy
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Hi all

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