its been 1 year

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its been 1 year

Postby aztwitchy on July 10th, 2013, 11:33 am

so i guess i'll make the obligatory its been 1 year post and I don't have ALS 8)

Its crazy to think but it has been a full year since things went wrong internally with me. I remember very clearly coming home one evening and suddenly feeling my hands and feet burning up...literally like they were on fire. I remember the horrible bee sting sensations hitting my body at random times in random spots. I remember the off and on headaches and horrible fatigue. I remember the bad back pains that just didn't seem to go away. I remember the horrible insomnia that began and has lingered. I remember my desperate trip to the ER after 3 days of no sleep and incessant nerve pains. These are bad memories and I'll be honest I wish I could say those experiences only made me stronger, but that's not the case so far.

I've seen probably 9 doctors and 3 chiropractors\wholisitic practitioners over the past year. Had tons of bloodwork, MRIs, EMGs, and any other tests you can think of. I've tried multiple medications, spent too much money, and in the end I still don't have a diagnosis. That's honestly the worst and most embarrasing aspect of this. I have even asked if this was anxiety and multiple doctors told me they didn't think so but it was definitely an aspect to this. I've asked about BFS and one neurologist doesn't believe in it and the other said "sure if that helps you". I have multiple level spine issues that I can't get an answer on if they are the cause or just another symptom. Its been a crazy frustrating experience.

Over the past year the only improvements I have seen were sharing experiences and ideas and theories with the people on this forum. Particularly BFSBurger. He has done research and shared ideas and theories and experimented with different things and shared that along the way. At times I'm sure its overwhelming or even annoying to some but for me I have benefited. Going to a gluten free diet, avoiding caffeine, chocolate, or other stimulants, ditching heavy excercise habits, sea salt baths, sleep habits, etc....all of these things have helped make things manageable and able to resume life. They haven't been cures for me but they have helped me get some semblance of normalcy back.

A year later here is where I am:

Things that are better:
Bee sting sensations happen very infrequently versus all day every day
no more headaches
fatigue is less
I don't worry as much about ALS, MS, or other dreadful conditions killing me off soon
migratory joint pain doesn't happen every day
burning hands and feet pretty much gone

Things I still struggle with:
Muscle twitching 24x7
Muscle spasms
skin issues (acne, rash type issues, etc)
anxiety
insomnia
numbness in hands and feet on occasions
Spinal issues\pain neck to bottom


I can honestly say its been the toughest year of my life...I am thankful though for many of you and for this forum.
"Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity." ~World Health Organization, 1948
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Re: its been 1 year

Postby SecretAgentMan on July 10th, 2013, 1:44 pm

aztwitchy,

I'm happy to hear the diet thing is making you feel better. I'm surprised the wholistic practitioners didin't address the diet thing with you. That was the first suggestion mine had for me. I guess it goes to show that every doctor is different, no matter what their philosophy. For some reason I feel compelled to suggest you looking into potentially going off nightshade veggetables, which are commonly inflammatory (surprisingly). Nightshades are potatoes, tomatos, bell peppers, hot peppers, eggplants, among a few others. Sweet potatoes/yams are not nightshades, so they can be a good substitute. This food may be beneficial for you to avoid to find additional releif. I hope your upward spiral of improvement continues!
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: its been 1 year

Postby aztwitchy on July 10th, 2013, 4:52 pm

SecretAgentMan wrote:aztwitchy,

I'm happy to hear the diet thing is making you feel better. I'm surprised the wholistic practitioners didin't address the diet thing with you. That was the first suggestion mine had for me. I guess it goes to show that every doctor is different, no matter what their philosophy. For some reason I feel compelled to suggest you looking into potentially going off nightshade veggetables, which are commonly inflammatory (surprisingly). Nightshades are potatoes, tomatos, bell peppers, hot peppers, eggplants, among a few others. Sweet potatoes/yams are not nightshades, so they can be a good substitute. This food may be beneficial for you to avoid to find additional releif. I hope your upward spiral of improvement continues!


The naturopath I am seeing now has suggested these and the changes you recommended. I am slowly adopting them. I love tomatoes so I do cheat and eat them now and again..

I am also going to try your accupuncture suggestion to see how it goes. its worth a try or two. I just hate that its so costly to make it a common treatment.
"Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity." ~World Health Organization, 1948
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Re: its been 1 year

Postby SecretAgentMan on July 10th, 2013, 9:08 pm

aztwitchy wrote:The naturopath I am seeing now has suggested these and the changes you recommended. I am slowly adopting them. I love tomatoes so I do cheat and eat them now and again..

I am also going to try your accupuncture suggestion to see how it goes. its worth a try or two. I just hate that its so costly to make it a common treatment.


I remember the first alternative medicine doc appointment I had. The first thing he suggested after reading my forms that I filled out was for me to get off of gluten and dairy. At the time I was very non-receptive to this. I could not fathom how on Earth my diet would have anything to do with neurological symptoms. I actually left the appointment thinking the guy was a quack. His dietary comments may not have been well received by me, but they planted a seed. At thee time I did not know why I had good days and bad days. I wasn't watching my diet at all or even considering it as a factor. I believe it was that night my wife and I decided to get a Dewey's Pizza. It was a gluten and dairy *beep*. Well, I ended up having a particularly bad night that night. I think I woke up with a night sweat and a panic attack that night. I was getting brain fog really bad at that time too. The next day I decided I was going to give the diet a shot. Much to my surprise I began to experience relief more and more as each day passed and things cleared out of my system. I still had twitches all over, but the stuff that was really scaring me went away.

I struggled to give up the foods that I enjoyed eating so much, especially since it made it so difficult to eat out anymore, but the relief I was experiencing I decided was worth it. I mean, I was scared to death that I wasn't going to be around to raise my new baby girl and watch her grow up. I was about as terrified as people on this forum get. It was bad for me. When I would slip up or worse yet cheat in my diet I would recognize the twitching would come on stronger to let me know my body was still reacting to whatever it was that I ate. Eventually I decided cheating wasn't worth it. That just left the slip ups. They got fewer and fewer as I learned the pitfalls of the diet.

I ended up switching alternative medicine docs because I really wasn't terribly happy with the guy I was seeing at first. He put me on the right path, so I owe him a huge debt of gratitude, but he was not a very good chiropractor. When he did adjustments on me I always felt worse. He was also a far drive for me. I did more searching and found a doctor much closer to me and decided to give her a try. I liked their practice much better and they offered the acupuncture/acupressure which the first guy did not. This is where I started to learn about what types of things are possible in working with the subtle energy system of the body. What really threw me for a loop was the allergy elimination techniques.

I really doubted that this stuff worked because if it did, why would it not be front page news? Allergies are a HUGE problem in our society so you'd expect the demand to be super high. What I found though was much more perplexing. I found that it DID indeed work but when I would tell people about it nobody believed me, and for the exact same reasons that I doubted it to be true. Everyone thinks that if it were true it would be all over the place, but it's not. There really isn't any money in acupuncture/acupressure techniques because you can't patent them like the drug companies do with allergy pills. It's a multi-trillion dollar industry. Is that part of the reason why? All I know is that I never hesitate to let someone who might be able to benefit from it know that it is at least an option. Even if they don't believe me, at least I tried to raise their awareness. So, all these learned food sensitivities and allergies are NOT permanent. Before you go eliminating them though, you have to eliminate them and get rid of the inflammation preventing healing from taking place. Cheating and slip ups just prolong the healing, so let that be a motive to stick to it.

Regarding acupuncture/acupressure, the doctors I've found in St. Louis and now in Dayton, OH both were very reasonably priced. In fact, both charged $50 a visit, which is pretty cheap bang for the buck in healthcare standards. My co-pay for insurance to see a specialist is $35, so even if it was covered in my plan it would be just over the co-pay. If you're in a higher cost of living area you might have a hard time finding someone as cheap, but try shopping around. The most important thing though is finding someone who knows what they are doing and who has the skill set to help you. I've had 3 docs now and all of them have done things completely different from one another. Some I liked better than others. My current doc is my favorite. He has a knack for reading your energy system like a book. He doesn't even have to ask me what is bothering me. He goes through his little energy scan routine at the beginning of an appointment and right away starts working on the problem areas. At first it used to amaze me, but now that I know the science behind it I'm still impressed but the magic is gone. :)
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: its been 1 year

Postby BFSBurger on July 10th, 2013, 9:23 pm

aztwitchy wrote:the only improvements I have seen were sharing experiences and ideas and theories with the people on this forum. Particularly BFSBurger. He has done research and shared ideas and theories and experimented with different things and shared that along the way. At times I'm sure its overwhelming or even annoying to some but for me I have benefited. Going to a gluten free diet, avoiding caffeine, chocolate, or other stimulants, ditching heavy excercise habits, sea salt baths, sleep habits, etc....all of these things have helped make things manageable and able to resume life.

Pretty sure nobody is annoyed and everyone loves me! LOL !... #denial

glad i could help. It's been a two way street. You've helped me too.

-Burger-
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: its been 1 year

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