BFS a life changer - Need some advice

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BFS a life changer - Need some advice

Postby aseelan on April 3rd, 2014, 12:10 pm

Hi All,
I am 27 yr Male, I live in Indiana, Indianapolis.. (Indian Origin not the native Indian(as in from Country india)).. I have been lurking around this page for almost an year (wish i could remember the date this all started ).. First of all, i should be thankful to all your posts which has answered my questions over this year.
This could be long.. Sorry and thanks for your patience reading through this

It all started a year back when after a pole jumping event in chicago i irritated my ulnar nerve , the next day i start getting some shooting pain down in my chest.. I thought i was having a heart attack or something but later was diagnosed with GERD. Now all that was settling down after a week or two i started to get this nerve pain all over my body (when i was playing on my PS3) it felt like pins and needles but also like nerve pain.. For a week that was going on (again looked online and Mr genius google) came up with MS. I was freaking out and i also had severe pain in my shoulder from sleeping on that hand all night.. I went to a chiropactor and he said that i had a curved cervical which he showed an xray. I believed him and was on therapy traction and STIM i guess.. Later that pins and needles(or pricking thing went off) after that i got it again but this time it was more focal (about a couple weeks after) it was on my left pointing finger and right toe i went on for a couple of days and to my suprise after i had a loose bowel movement that afternoon it went away thats the first time i saw a nuerologist. He put me on Gabapentin the day i came from his office ,i started getting twitching and my right leg was feeling week. He then put me on Lorzone if i remember it correctly. then the twitching reduced in the mean time he ordered a cervical MRI and didnt find anything suspicious apart from a cavernous hemagioma and mild disc protusions. Now after a couple of months i started feeling some stiffness and tics like feeling and told the doctor about it and he told me to stop gabapentin and i stopped. I started getting the nerve pain/ pin or needles *beep* for sometime and it wore off but another thing started was my neck stiffness (I would really call in stiff but its like my neck muscles are pulling or tensed). I went and saw my nuero he said we will put botox ( my mom has cervical dystonia which she got at the age 62 now she is 65) so he ordered for botox and gave me ativan n the mean time. Ativan did loosen up my muscle but very bad side effects in just weeks I took myself off of it when i went to my hometown india for my brothers marriage and i had some very mood changing withdrawl symptoms.
Now from then i have seen like 4 other nueros in india and two in US and some lab tests of my own (there are somewebsites where u can order a lab test and there is a physician who approves it)
I had full spine MRI
Cervical and Thoracic was good no straightening or anything I think the chiropractor fooled me (but with my neck tension and stiffness i am debating if he was right) i had one MRI of my cervical alone and that didnt tell anything about my spine posture
In my Lumbar i have a L5 S1 fracture i have seen two ortho and they said like mild scoliosis which i might have had from birth
As things were happening. I started getting stiffness in my right leg, i contribute that to be because of my L5 S1 but my ortho thinks no he said may be mechanical stress even for my neck.
I also had a brian MRI done and it was normal
Ive had NCS in both my arms and it was normal (I never had an EMG because my nuero didnt think so since my reflex and physical examniation were fine)
I also had an EEG and it was normal
(As a matter of fact all the above scans and MRI were never from an doctor it was all SELF (its possible in India without a doctor referal).
I also had an endoscopy since i had bowel issue and i was told i had hiatus ehernia and also my GP here told i may have IBS as well because my muscles on the side of my stomach also used to feel stiff
I was convinced i had bfs (a recent nuero i saw didnt even want to put a name to my problems)
Now, i have stiffness or feel my muscles pulled or tensed near my right eyes and left cheek (its not visible when u look at it)

I dont want to take any medications I was on gaba again and flexril didnt seem to help after trying it for a week now i am off that as well. I live alone in the US (my family friends and relatives are all back in India). Nobody seems to believe that i have somethign they all dismiss saying its my mind. I have it and i can feel it , if it was normal why would i be even complaining about it. I feel that there is no one to believe me.

I have stiff or tensed neck muscle ,stiff face muscle kind of scattered, my jaw sometimes, stiff right leg and when i sit and my stomach muscles are rigid

In the mean time I also developed tremors first it was only my right hand.. Now its on both and actually all over by body now when i bend down or lift soemthing heavy minor shakes are fine but mine shake a bit more. When i bend down my whole legs tremble. especially after excercise in the gym its the worst.

What do i do? I dont have anybody who believes that i have all these and over that i dont know whats going to help me .. Doctors say try medcines but they dont seem to help.

All i take now is magnesium , calcium, Vitamin D and valerian root .. I am not sure if any of these actually help. I am wasting a lot of money trying to find what i have because the doctors and others seem to be disinterested. Can someone here help me out?

One thing which i recently found was, i got a sleep well mouth guard a while back ( I saw somewhere that it you are clenching your teeth in the night) you can have neck stiffness i tried that didnt work. Recently i just tried in during the day and to my suprise my stiffness in the neck or tension in neck as well as my stiffness in the leg is relaxed. I am not sure what that means.. Has anybody had relief this way.. Please help and advice me.. This forum has helped me make my decisions on supplements and stuff. I was excited to join this forum so that someone here will help me.

Tnx
Alan
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Re: BFS a life changer - Need some advice

Postby SecretAgentMan on April 3rd, 2014, 1:12 pm

Alan,

First of all, I can totally relate to your story. You want answers, not drugs to mask the symptoms. You know something happened that set all this craziness in motion. You want to know how to address it so that you can heal and live a normal life again. Since you are in Indianapolis you are less than 2 hours from Dayton, Ohio. I see a pair of holistic doctors in Dayton that may be able to help you do just that. They were instrumental in my recovery from BFS, which I no longer have today. If you want their info I can PM you. Good luck and I hope you feel better soon.
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: BFS a life changer - Need some advice

Postby aseelan on April 3rd, 2014, 1:38 pm

Thanks for your repsonse SecretAgentMan. Please PM me the details.. Will be more than happy to try something that has helped.
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Re: BFS a life changer - Need some advice

Postby aseelan on April 3rd, 2014, 2:49 pm

Any more advise or suggestions.. I would like to be n touch with ppl who understand me..

Thanks in advance!!!!!!!

ALSO, IS IBS ASSOCIATED WITH BFS??
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Re: BFS a life changer - Need some advice

Postby SecretAgentMan on April 3rd, 2014, 3:42 pm

aseelan wrote:Any more advise or suggestions.. I would like to be n touch with ppl who understand me..

Thanks in advance!!!!!!!

ALSO, IS IBS ASSOCIATED WITH BFS??


Sorry for chiming in again, but you struck another chord with me. I was diagnosed with IBS in 1998 (college). I developed BFS in 2010. The IBS would come and go, usually around finals it would flare up the worst. There was definitely a stress connection. When my BFS started my IBS was flaring up again. I was unemployed at the time and my wife and I were expecting our first child. Talk about stress! Anyway, when I found doctors that were actually helping me with my BFS I had to make some dietary and lifestyle changes along with the treatment I was receiving. The IBS went away and never came back, even before I overcame the BFS stuff. The two were related in my case.
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: BFS a life changer - Need some advice

Postby Steph on April 29th, 2014, 2:36 pm

I also have the IBS/BFS connection and it followed nearly the same presentation pattern as SAM's. I first started having problems with IBS in 2001. My IBS would flare up during stressful events (my symptoms seemed to be triggered by both emotional and physical stress). My IBS attacks included accute, intense pain in the upper right quadrant of my abdomen that was often preceded by a stressful event and would last for hours and sometimes even a few days. My GP considered gall bladder issues, but all of the tests, including hida scan, came back negative. My twitching presented this past August during a time of extreme emotional stress. In the 9 months since, my BFS symptoms have waxed and waned based on my overall mental/physical stress levels.

A couple of weeks ago, I unexpectedly lost a member of my extended family in a tragic accident. As we were gathered the night before the funeral, my IBS symptoms came back in full force. I realized then that the excruciating abdominal pain was also present the night of my brother's funeral. And during most of the other stressful events of my life throughout the past 13 years. I am convinced that for some of us, these symptoms are a result of somatization of stress. The stress trigger can be both physical (illness, extreme conditioning- IBS flare ups have occured form me during marathon training after long, hard runs) and emotional.
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Re: BFS a life changer - Need some advice

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