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Nervous system overdrive

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Nervous system overdrive

Postby Pulpfriction01 » Mon Nov 23, 2015 2:46 am

I posted this to another thread, but am looking for a little bit of feed back.

I have had BFS for a few years so I have become accustomed to the weird stuff that happens. I have had the full body surface twitching, pins and needles, cramps, right side weakness, and tongue zaps before.

But something strange happened in September to me and I don't really know what to think about it. I was diagnosed with BFS in january, 2013 after it started in september 2013. I had mris of back/head, a lot of blood tests, and an emg/ncs to confirm diagnosis. BFS was pretty much in control and i accepted the diagnosis.

But in september 2015, after taking phentermine for 2.5 weeks, all hell broke loose. Stabbing pain in my face/head/eyes. Began waking up gasping for air. The gasping for air at night turned into shortness of breath during the day. I stopped taking the phentermine then. The tips of my fingers and toes all started to go numb every day. I felt this strange stiffness moving across my body. It started in the fingers then the toes. And the stiffness has now moved to include my shins and biceps.

Every day it continues to move further. The areas that became stiff the day before then developed twitching, so now my entire body has verying degrees of stiffness and twitching. The toes and fingers are the worst. They start moving around. If i use the muscle, it gets much better, but the second i rest it starts right back up constantly. The shortness of breath comes and goes, but even it feels like my lungs are tight. It is a strange sensation but it is the same feeling that I have in my arms and legs. I also get the same stiffness feeling in my right eye and the eyeball twitches on and off. When it gets the stiffness feeling, my eye gets blurry and looks hazy. And lastly, I get random moving feelings of weakness along my biceps, tongue, jaw, and back of throat. They come and go, so as far as I have learned, that is a good sign because the big one doesn't come and go and the weakness isn't perceived.

I have started seeing several doctors and a neuro. Doc thought sleep apnea. I did a sleep study, no sleep apnea. The doc thinks its all in my head. I am definitelynot imagining this. You can see all the twitches and my fingers going crazy. Again, I have had BFS for three years now, and this feels different.

The numbness in the tips of my fingers have started to subside, but the constant muscle moving, stiffness, twitches, from my face to my feet is a little much and far worse than I had previously experienced with bfs (my bfs before had periods of being constant, but this is even more active). Each day i get another new sensation. Lately i have been awakening to a terrible tremor that makes it pretty much impossible to go back to sleep. I've been averaging about 5 hours of sleep a night because of it.

I got a referral to mayo to have another workup done, but they have not yet called to set up an appointment. The recent neuro did not perform any mri's,emg/ncv. He essentially said that my last neuro was exceptional, so if he gave me the clear, then im good. Unfortunately, hd only takes THE DISEASE I DON'T HAVE patients now so i could not see him again.

Ran some blood work. My Vit D and magnesium are a little low. My cholesterol is way low (120 ovr, 33 hdl) and my cortisol is nearly three times what it should be. I'm on supps now to try and balance those back out, which is probably caused from my job (27 yo night shift police). I had to be put on light duty until my nervous system comes back to normal.

I know this is a long one guys, and I will update it with what mayo says when I get in. I am not freaking out about a particular disease or anything, I just want this to stop so I can get back to work. I figured somebody will some day stumble upon this and it may be able to help them if I get some more answers.
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Re: Nervous system overdrive

Postby misterjuanperalta » Mon Nov 23, 2015 10:42 am

Elevated cortisol can be a sign of elevated stress, adrenal issues, possible IBS (Irritable Bowel Syndrome) and/or cardiovascular disease. To resolve cholesterol, take the OMEGA 3 supplements and minimal amounts of Omega 6; eat plenty of whole eggs. Consult with your doctors about these possibilities.
Last edited by misterjuanperalta on Mon Nov 30, 2015 1:24 am, edited 1 time in total.
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Re: Nervous system overdrive

Postby Patriottwitch » Thu Nov 26, 2015 11:50 pm

Low cholesterol... Have you looked into malabsorption? I have low cholesterol related to fat malabsorption I have had most of your symptoms. It gets better. It relapses. Start a journal. Look at your diet. Have you seen a rheumatologist?
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Re: Nervous system overdrive

Postby Pulpfriction01 » Fri Nov 27, 2015 12:09 am

Have not seen a rheumy. The doc said he believes I have a lipid metabolism issue. Said I have Gilberts syndrom, the low vitamin d, and the low cholesterol, which indicates I'm not properly breaking down food. He does a lot of naturopathy and gave me several supplements to take. Did more blood tests a few days ago. My symptoms are getting better finally. And my blood numbers are also headed in the right direction. My HDL is up to a 43 but he said he wants it to get to at least 60-80 with a total cholesterol of 180ish. Also just started taking cortisol medication to try and get my adrenals back to a good range. Going to do an mri of my kidneys to make sure I don't have a tumor on my adrenals, which could cause all of my symptoms. I will keep people up to date. Aboutbfs has helped me out a lot, even for posts that were ten years old. So the more information we put out there, the better information future bfs'rs will have.

Ps, I suspected food plays a roll in it as well, but I am unable to figure out what. I tested well for gluten. I have tried periods of veganism. No improvemen when I did.
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Re: Nervous system overdrive

Postby Twitcheer » Sun Nov 29, 2015 9:00 pm

Interesting. I have low cholesterol and am vitamin D (and B12) deficient. The twitching began after a period of stress regarding another health issue. I'm curious as to if my cortisol levels are high. I've remained highly anxious for the 18 months that I have been twitching.
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Re: Nervous system overdrive

Postby Pulpfriction01 » Tue Apr 19, 2016 2:50 pm

For anyone who stumbles upon this post in the future, I went to mayo clinic and had a complete workup done. My muscles were cramping so bad during the emg/ncs the examiner could watch my toes curling. After everything was aid and done......... bcfs. Benign cramp fasiculation syndrome. A medicine I was taking called phentermine sent my nervous system into hyper drive. It started getting better in January and has almost entirely gone away here in april.

Moral of story: if you have bfs, avoid all stimulants. If you need energy then change your diet to more veggies and fruits.
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Re: Nervous system overdrive

Postby Twitcheer » Wed Apr 20, 2016 7:11 pm

Do you, by chance, take a PPI for reflux? You mention malabsorption. I'm on Prilosec for life and I have low cholesterol, low D, and low B12. And I twitch. Seems like bad news comes out about PPIs monthly.
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Re: Nervous system overdrive

Postby Pulpfriction01 » Tue Jun 07, 2016 11:47 pm

Sorry, I don't log on very often anymore. I was perscribed a medicine for acid reflux for life, but don't recall the name because I don't take it. Acid reflux is related to a poor diet. More green veggies and fruits, less meats, cheese, and bread does the trick and is much healthier.

I'm still having the BFS stuff that's been going on for 5 years. Decreasing stimulants helps tremendously, as well as diet and decreasing stress. I usually don't notice it anymore unless the symptoms are extra strong that day. Most of the threads I see on here are repeats. The key is going to a reputable doctor, having all the tests done, and living with the results. Get a second opinion a few years down the road if you still arent certain, and go live life. This stuff can consume you because it feels so strong and what is happening is real. But BFS wont hurt you.
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Re: Nervous system overdrive

Postby Pulpfriction01 » Thu Aug 23, 2018 3:10 am

So, 2 years and a few months later update.

I have had 2 "episodes" of bad BFS problems since I was last on. I started having headaches everyday in January. Saw a headache specialist, who was putting me on a few different medications. They found one medication that my nervous system did not like, which caused the disorder to show back up.

So my symptoms this time are the widespread twitching, stiffness in my limbs, some muscle/nerve pain that moves around, stiff and painful joints, plus the headaches. The new and slightly concerning symptom is nausea with occasional vomiting. My tongue feels weird. I was prescribed nause medication, which did nothing for me. The symptoms started to subside in April.

About a week ago, they spiked back up again for no known reason. Very stiff crampy limbs, twitching, headaches, and the nausea has come back again. Saw the headache doc, who is the third Dr. I have had tell me that they think it may be Cushing's. I have been waiting 8 months to get in to an endocrinologist for cushings. Headache Dr. Prescribed Xanax. Said to take the Xanax and if my symptoms get better, then it is likely a stress reaction. The Xanax helped. It made every symptom get better. But when it starts to wear off, my twitches go crazy again. The headaches and the nausea is most concerning to me though. Nausea isn't usually associated with BFS, but anxiety and stress are so that could be a result of those. I had new MRI's of the head to confirm no changes. All I know is in 6 years of dealing with this, it has been a horrible roller coaster of new symptoms that cause anxiety and stress.
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