My Story, Can this all be from BFS?

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My Story, Can this all be from BFS?

Postby justink1515 on May 21st, 2014, 6:28 pm

Hello, my name is Justin, I am a 28 year old male and I guess you can say my life altering symptoms first started a few months after my 27th birthday. I have always had really bad exercise intolerance ever since I was in middle school, which back then had seemed to improve the more I did it. This exercise intolerance just got worse over time causing me to quit basketball in high school, the running and looking for a ball made me lightheaded and nauseous. I was always hesitant to go full force to prevent this feeling, I turned to weight lifting in college which did not give me the same feeling but after college there were times I had to drop to one knee because of chest tightness and trouble breathing with heart palpitations. I eventually gave up weight lifting as well. I then experienced recurring chest tightness and sudden blocked nose when going out, and developed eye floaters. I went to the ER and had chest X-rays and EKGs which were both normal on a number of occasions.

June 20th 2013 - Two years after stopping going to the gym, I got hit with mild nauseousness, fatigue/‘weak’ jelly legs with a lump sensation on the left side of my neck and a 17 pound weight loss. I put quotes around weak because of the whole perceived versus real weakness argument. Anyways, I went to the doctor and he suspected a thyroid issue. I had all kinds of blood tests done and an ultrasound of my thyroid. Everything came back normal except for H.Pylori findings in blood and a small insignificant sized nodule on thyroid that was reported as a normal abnormality, size 6 mm. I took a breath test for H.Pyrlori and it came back negative but a GI doctor treated it with antibiotics just in case because it had never been treated. First thyroid results - TSH w/ reflex to FT4 Result 3.13 Normal Range 0.40-4.50, Normal. Second thyroid results - TSH Result 1.70 Normal Range 0.30-4.5. My CBC was all normal except for a minor elevated level of Albumin 5.4 which was considered insignificant.

I was referred to the same GI that gave me antibiotics for H.Pylori for an Endoscopy w/ biopsy. Celiac runs in my family but I was negative with no evidence of sprue, parasitic infestation or Whipple’s disease. I was diagnosed with chronic astral gastritis with focal activity. I also had active esophagitis which was moderately severe.
I also had further ultrasounds of bladder, prostrate, kidneys, gallbladder, bile ducts and liver, all normal. I also had no blood in stool verified with stool samples. By this point I am also having really strange digestive issues with no known cause. Very loose stools, sometimes together but loose together almost like its hairy. Yellow in color often but not always. (Sorry if this is too descriptive.)

I also saw an ear nose and throat doctor who was puzzled, I had recurring tonsil stones, throat irritation, and mild reflex laryngitis. Had blood work that showed past Epstein-Barr virus.

I was then referred to a neurologist, by this time i was experiencing trouble doing things I could do in the past such as twirling pencil (which has since got better). I also had twitching, fatigue in legs, burning pain in legs, burning pain down arms when I sneezed, a lot of weird sensations as if I was drunk standing with dim vision and in someone else's body. I had normal tests of my brain and neck via MRI as well as a normal EMG with what they told me was BFS (was very early on when symptoms were not nearly as bad as they are now.) There was no evidence of myopathy, polyneuropathy or polyradiculopathy. I was only poked a few times with needle, the shock part seemed thorough to me but the needle part did not hurt or seem thorough to me. My blood tests there were normal except for Low Testosterone.

I went to an Endocrinologist specialist for the Low Testosterone and he retested me early in the morning and said I was fine and that can happen late at night. He also said he believes I am sick by just looking at my hands and feet, they tend to be pale, with purple fingernails and ice cold to the touch. He told me I am sorry but you need to go to Mass General Hospital to a genius and that “Bad things happen to good people”.

I took his advice and after a long waiting period I was accepted as a patient to MGH in their neurology department by a team. I was tested for chronic lyme using the normal methods as well as the western blot, all normal. I had another MRI of an area of the spine that was missed and that was normal as well with minor vertebrae findings ruled insignificant. I also had a tilt table test which came back with borderline POTS. I also had a skin biopsy which came back as borderline small fiber neuropathy 13% tile when 3 or 5% or less is needed for diagnosis. My symptoms are so bad now I am on medical leave from work. I also developed active tremor that are slowly becoming worse. I wake up with my arms, legs and shoulders feeling so fatigued and strange.

May 20, 2014 - Todays list of recurring / 24/7 symptoms - Fatigue, weakness in arms, hands and legs, occasional dull sense of touch, occasional nausea, diarrhea, early morning shoulder fatigue and tight forearms and paresthesias in fingers, cold hands and feet, body wide twitching, occasional burning sensation in forearms, knees and palms, occasional difficulty chewing and swallowing, dry mouth, eye floaters, enlarged optic nerve, loss of appetite, weight loss, exercise intolerance (nausea, tremors, chest reactions), occasional depersonalization (body does not move as well or as precise as it should), occasional pain under armpits, frequent lump sensation on left side of neck, twice shock sensation on left throat that sends numbness down left arm, infrequent shocks on top of feet and ankles, fast onset of blocked nose causing difficulty breathing, infrequent sternum pain, dry cough, face rash after emg that has let up. Waves of feeling sick, general malaise like the flu, accompanied by stiffness in the limbs. Have to think when I walk from the jelly like feeling in legs. Concentration and attention span reduced. I have also developed waking up with my ring and pinky fingers numb and curled over (ulnar nerve symptom) on both hands. Todays new symptom is a numb left pinky toe. Making more typing mistakes when on computer. I also think I have sleep apnea because I wake up gasping for air, my heart rate is also really low when I wake up from sleep below 60 bpm (bradycardia?), I also jolt sometimes when dozing off causing me to stay awake. Hair thinning, overall muscle shrinking, think from no longer working out, not noticeable clinically.

If you have read this far, I thank you so much, I know this is lengthy. My appointments are so far apart and there is nothing I can do but wait it seems. I am looking for a good support system and if anyone has any ideas of what this can be please help, I can provide more test results and also answer if I had something looked at yet. I also have anxiety from all of these symptoms, it has caused me to look up things like Parkinsons, ALS, MS, and other scary medical issues.

Thank you,

Justin
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Re: My Story, Can this all be from BFS?

Postby leaflea on May 21st, 2014, 6:48 pm

If a neuro said it is BFS and you have a clean EMG you are cleared of all the nasties. Hooray! It does sound like you have a lot going on - but much of it not clinically significant. The more labels or "near labels" you give yourself, the more likely you are to see yourself as ill. My advice would be to start looking at yourself as being HEALTHY - look at all the things you can do and all the NORMAL lab results etc. that you have. Does BFS cause all this, I don't think so. But, I think Epsein Barr can cause a whole bunch of stuff, primarily just not feeling well in general. Get lots of rest, eat really healthy, drink lots of water, and get some moderate excercise and tell yourself every day that you are healthy. I had the Epstien Barr virus and felt like crap and caught so many illnesses/spiked fevers for a few years. After having mono, I had green knuckles and under my eyes for a year. Those viruses are nasty, but not deadly.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: My Story, Can this all be from BFS?

Postby ShawnW on May 22nd, 2014, 12:02 pm

Sounds like you have a mixed picture of some legitimate complaints (just not for the bad stuff) and hyper-excitability. I would imagine that if you took care of the anxiety you would feel significantly better.
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Re: My Story, Can this all be from BFS?

Postby Dennis_dw on May 25th, 2014, 6:02 pm

Wow :o

I have a lot of the same symptoms, its like I've could have wrote them myself. I know It can be very hard I hope you find an answer soon!

The apnea's are terrible! I am still trying to figure out if these are apenea's or hypnic jerks, but I also wake back up 10 times before I can fall asleep. I also have a very low heart beat but it is pounding very hard. Maybe going to a sneep clinic would be a good idea?

I also posted my story a few weeks back, I know it can be frustrating being

leaflea wrote:If a neuro said it is BFS and you have a clean EMG you are cleared of all the nasties. Hooray! It does sound like you have a lot going on - but much of it not clinically significant. The more labels or "near labels" you give yourself, the more likely you are to see yourself as ill. My advice would be to start looking at yourself as being HEALTHY - look at all the things you can do and all the NORMAL lab results etc. that you have. Does BFS cause all this, I don't think so. But, I think Epsein Barr can cause a whole bunch of stuff, primarily just not feeling well in general. Get lots of rest, eat really healthy, drink lots of water, and get some moderate excercise and tell yourself every day that you are healthy. I had the Epstien Barr virus and felt like crap and caught so many illnesses/spiked fevers for a few years. After having mono, I had green knuckles and under my eyes for a year. Those viruses are nasty, but not deadly.


Do they test for the epstein-barrvirus in normal blood tests? That looks like a real nasty virus, i can't imagine that they looked over that one every time. Who tests this? I am going to my old dokter tommorow because my new one is on vacation because i am unable to go to work because of may of the same symptoms Justin describs, I am going to ask if i was ever tested for this.

Greetings
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Re: My Story, Can this all be from BFS?

Postby leaflea on May 25th, 2014, 8:23 pm

I believe Epstein Barr is related to mononucleoisis. You may test positive for it if you ever had mono. It causes problems sometimes for years afterward. While it is active, you have symptoms of sore throat, enlarged glands, etc...But afterward, resistance is down and you get tired really easily and catch everything, kind of like chronic fatigue. I was in my early 20's and in the best shape of my life, but would frequently be bedridden with fever. Had had a nasty case of mono in my late teens.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: My Story, Can this all be from BFS?

Postby muppetdog on June 13th, 2014, 4:07 am

I think 98% of the world has EBV, so odds are pretty good you will test positive.
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Re: My Story, Can this all be from BFS?

Postby joshi on July 1st, 2014, 8:06 am

why here nobody ever thinks about myopathy? everybody is concerned about ALS while most of our symptoms match with metabolic myopaties, twitching included...
Stiffness, weakness, paresthesias, exercise intolerance, soreness, pain, fatigue, twitching, breathlessness...are all tipical symptoms of myopathy!!! they match perfectly... instead of being scared of ALS which nobody have in here i would be concerned about myopathy which cannot be ruled out by EMG or CPK LDH ... at least one should run a lactate test (anaerobic and aerobic) if not a biopsy.. obviously i'm referring to th people who have other symptoms other than twiching and have them for years...
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Re: My Story, Can this all be from BFS?

Postby Yuliasir on July 1st, 2014, 8:28 am

I think it is just becasue lactate test is relatively complicated, biopsy is painful (however some of fellows went through spinal tap deliberately!), and generally EMG is easier to do :) Methabolic myopathies are also not very frequent as far as I understand, an it seems like there is also no cure for them, however they would not kill...

Also fear is an important part of our life (I mean for those who have prominent OCD or GAD component). We need that, and why one should fear of realtively mild disorder?

(I am not so much sarcasting as it may appear. I am GAD sufferer since 6yo and I know what does it mean to live in a NEED for fear. Same as any other dependancy).
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Re: My Story, Can this all be from BFS?

Postby muppetdog on July 1st, 2014, 8:49 pm

I like the way Joshi is thinking. It would be something to rule out.
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Re: My Story, Can this all be from BFS?

Postby muppetdog on July 2nd, 2014, 1:00 pm

A Diagnostic Algorithm for Metabolic Myopathies

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2872126/

A pretty good overview.

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Re: My Story, Can this all be from BFS?

Postby mary_cali80 on July 27th, 2014, 9:40 pm

You sound like me, three years ago. Even the dang 2 fingered claw hand that I convinced everyone I really had, even down to the strange grip when I picked up a cup, including my neuro...although diagnostically, this was not so.
But man! I was so convinced I had it.

3 years, $20K in medical testing, and over 1000 pics of my arms (to prove I really did have muscle wasting) I now realize all I had was some pain, twitching and anxiety. I lost a lot of time and money searching for a diagnosis that would never really put me at ease. I'd say a major part of your problem is anxiety.
I still twitch and burn and have the other stuff and it recently came glaring back, but at the heart of the problem is anxiety. I now frequent anxiety zone dot com but do poke my head in hear to get some fleeting reassurance.

How do you want to live your life? Do you want to be a diagnosis chaser, spending time and money and your life, chasing a title to your symptoms? Do you want to be one of those people that list 20 ongoing diseases/issues along with every test they've had and every med they've taken or do you want to actually have a life?

The root of your problem is anxiety. I'm not a fan if big-pharma but even on a bad day, I'll pop a 1/2 of the lower prescribed Xanax. I don't do it every often, but it's comforting to just know its there.

You're fine. You're not dying.
Last edited by mary_cali80 on July 27th, 2014, 9:47 pm, edited 1 time in total.
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Re: My Story, Can this all be from BFS?

Postby mary_cali80 on July 27th, 2014, 9:46 pm

And reading your symptoms again, I had ALL of them except the rash over the EMG.
You're so in tune with your symptoms and every feeling, that your body is manifesting more pain because your in constant FIGHT OR FLIGHT MODE.

You're 3 years younger than me and you're the exact same age that I had all of that. And I'm still here.
The only reason I had a flare-up was because I was stressed out at a new job.

Look into anxiety zone dot com and you'll find many have what many on here have, including you.
Life is passing you by, as we speak. Don't google it. Live it.
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Re: My Story, Can this all be from BFS?

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