Battling BFS and Other Health Issues

[xXxGodxXx]

So I won't go on and on denying that I have BFS. I've been through some seriously emotionally times during the last several weeks with the ALS scare and I'm mostly over that. However, I remain convinced that something else is wrong with me (in addition to BFS.)Here is the quick run down...,Prior to all of this I had lost nearly over 60lbs. in the last year due to heavy exercise and diet regimen. I am a fairly young (30), relatively active guy who was at the pinnacle of his career in corp. america. I now find myself struggling to face each day. I am no longer lifting weights or running and have gained 20lbs since April 1st. Also, for what it's worth, prior to this I hadn't been to the Dr's in years and didn't even have a PCP being convinced they never really know what the heck is really happening. I'm the guy who just "muscles" through stuff. The irony.... April 1 - really bad cough, cold, etc.April 17 - apparently an inner ear infection that resulted in vertigoApril 15 - started noticed what felt like uncoordinated feeling or weakness in left leg. This finally spread to both legs after a week or so.April 25 - In the ER for 2 days with fever of 103 and really bar sore throat.April 1 - May 25 - Multiple blood tests including GM1, CBC, Complete Chem, Lyme x3, Spinal Tap, MRI x2 and an EMG.Since April 25th I have seen a bunch of Dr's including changing my PCP a two neurologists. The last neurologist did an EMG that was clear and said he felt the fasciculations were likely benign. The EMG/MRI was run on May 25th. The MRI included the neck and brain and was clean. Although the fasciculations come and go and are sometimes accompanied by cramping I have some other very disturbing symptoms. I seem to have a constant extremely subtle tremor. I notice after using my muscles to do anything requiring effort. i.e. bending down to pick something up for more than a few seconds my legs will shake, putting the top on the toothpaste sometimes feels awkward, when I put my teeth together I can feel it in my jaw, I also notice this "tremor" in my jaw after talking a lot. I also notice that my eyes are somewhat sensitive to light now. I also have difficultly recalling words and my brain seems to be foggy and somewhat slower. This has made work difficult for me at times because I find myself having to read and reread emails just to comprehend. I also have become EXTREMELY aware of my own heart beat and find myself taking a lot of deep breaths. I will add that I was given an Rx for Celexa (10mg/day) on May 25th. Although this can contribute to tremors and such I will add that I noticed these prior to the Celexa Rx. My PCP also gave me a small Rx of klonopin (.5mg) to take on an "as needed" basis to help deal with the anxiety. I've now started alternative medicine with a "Chriropractic Neurologist" and an Acupuncturist but have yet too see results.I am so desperate to have my old body back and am so frustrated with a lack of answers from any MD's other than BFS. I believe BFS does explain the fasciculations and cramping and I'm okay with that, truly... But this constant shaking/tremors that seems to really get worse with activity and the uncoordinated feeling is truly awful. I seem to "pass" all the routine touch your nose, walk in a straight line tests which convince the neurologists nothing is really wrong..., but I KNOW IT IS. I feel it. Any direction, advice, etc would be truly appreciated. I live in Portland, Maine and have most recently seen a neurologist at the Lahey Clinic in Burlington Mass. Although hes a great guy, he's very hard to see and I'm convinced he's missing something. I think the fact that I had all these viral things in early April has really given him (and others) a false road map.Thanks for the help,Matt

 

[twinTwosome]

Welcome to the board. You are still very new to BFS, so your symptoms right now are at their peak. Temors are a huge part of the early stages (and later flare ups) of BFS. I experience severe tremors when doing anything physical for the first 3 months. I still get tremors after exercise, coffee, or when I am hungry. The good news is you have gained 20 pounds. You would not be able to do this if you had any serious condition. Those are usually accompanied by weight loss. However, so is anxiety. Once your anxiety is well under control, you will likely see a reduction in the severity of your tremors. Your brain function will also return to normal. It is very difficult to think straight when you are worried about your health. Even if the fear is not at the front of your mind, it is always there subconsciously until you come to terms with BFS. The jaw tremor is very normal for BFS as well and something I and others on the board have all experienced. Rest assured that you are not alone. All of your tests have come back normal. Read "BFS in a Nutshell" here on the board. I believe the Mayo study of BFS is there. You will see that once diagnosed as benign, twitches do not develop into anything sinister.There is a lot of good information to be had here on the board. Use the search function and you will see how your symptoms are similar to others. If you have specific questions, there are many knowledgable people here who have had BFS for years. Everyone here functions normally over time and BFS becomes part of the background noise. You (and I some day) will get there too.

 

[Krackersones]

Perhaps you can ask your doctor for tests that might show whether your immune system is overreacting like a raji cell test (this tests for immune complexes) and an ANA titre? These tests were positive for me and have pointed to an immune-related cause. I had a spinal tap too and it was normal. I agree with what everyone else said for the most part but if you haven't had your immune systems thoroughly checked this might be one other thing to easily do as long as you are still seeking some clues as to what might be going on.By the way, could you describe the pattern of your twitching (when, where, and how often do you get them?).Krackersones

 

[AllGoodHere]

MK - At least you know, from responses, that your case is not unique. Not that it makes it any less perplexing and frustrating, just that some of us have/had very (if not identical) symptoms and are still here years later and most have improved. I say most because many, after they get control of themselves, learn to live with their symptoms, and their life improves due to coping skills and healing, move on. We can guess that they are fine....Prior to the worst of my pnhe symptoms I also had a terrible raging fever for days (worse one that I can remember) and viral symptoms. I was in bed and not able to move, alternately burning and freezing and this did not vary in intensity just quality. I would have gone to the doctor or ER if I could have driven. Many here have reported similar onsets and there's much discussion about it (search the forum) whether it is a cascade effect, immune response, viral, it is something many of us wonder about.All your symptoms sound familiar but as Ed says, you have to look to your own health. I believe that it is most important that you take stock in all aspects of your well-being and this is part of the healing process as you obviously have some recovering to do. And, patience - a difficult quality for me - is needed. Better your diet, moderate exercise, find ways to relax (techniques, classes, whatever does it for you), and if you are like many here, a controlled RX which is frequently reviewed with your neuro. The Rx'd drugs for our symptoms all have their drawbacks and good points - the main thing to realize is that they also affect each person differently and need monitoring as you grow accustomed to them. I used them for a short period as I found that after a few months the drawbacks started outweighing the pluses - but each person is different. It caused me to be forgetful so as I got a bit better, eased off it. Keep in mind that the many side effects of Rx's may be mistaken for part of pnhe and may not be (brain fog, forgetfulness, confusion, to name a few) and may come on slowly, not immediately after you take them.If you are to go for more testing (it seems you are still on the trail as we often are at the beginning although some of us continue on with less vigor) you may want to ask your neuro to look into metabolic myopathies. I understand that for some of these, the adult onset varieties, although rare, can be brought on by high fever. Though, as my neuro says, he will have to 'read up on these' as they are not common and there are variants that are still being 'discovered'.Alternative medicine - I tried quite a bit of this and had varying results. Out of the 5 APs (acupuncturists) only 2 had a distinct positive result - and this only lasted for a period of time (days to a week). Only one chiro was any good for me and that was specific to one problem area (jaw) where she did a specific type of gentle therapy (cranial sacral). So what I'm getting at - not all are created equal and you may need to try on more than a few to find one that 'fits' you. Most of the standard PT just aggravated my symptoms but some here have reported good results with massage, etc.I still want my old body back also. It is about half way there as I can again do some of the stuff I used to. It just takes a lot of conscious effort for me to keep my diet & supplements, get enough rest, do some meditation and exercise consistently. In short - all the things that I have found specifically advantageous to my success at 'approaching normal'. Whenever I feel sorry for myself I remember all the people I've met in my life, some of them friends, who have more to cope with every day than I do (due to physical limitations, illness and injury) and still succeed. Why not me? why not you?

 

[paucek.sheldon1]

Matt,Regardless of whether you have long term BFS or not, your body has had a tough time of it the last month.I suggest that you need to give your body some time to heal. If you are sick for a month, why would it not take at least a month for your body to recover.My herniated disk in my back (may) have caused my BFS. Or not. But it is now 5 years later. I think I am still healing.This is not a cut or a bruse, the body heals slowly. Nerves heal slowly. One nero-surgeon I saw said nerves heal at the pace that hair grows. My experience is slower than that.The good news, as an earlier poster pointed out, is that you are probably at the peak of your symptons. In the comming months (and possibly years) they will probably decrease. Maybe even go away.This is a marathon. I suggest thinking of it as such and preparing yourself mentally.The good news is... you will (probably) get (somewhat) better. -43RichyThe43rd

 

[xXxGodxXx]

Hi all,Thanks for the encouragement. Sorry it took so long to respond. I think I was intentionally ignoring all of this in hopes it would go away. And it did..., for awhile. Most of July and August were great! I didn't feel any fasciculations and although the jaw tremor (slight teeth chattering) never really ended I mostly forgot about it.That brings me to two weeks ago. The vertigo started again, except this time it's seemed to involve my vision too. Almost a blurry like feeling. Like my eyes are tired and I just want to close them, except doing so does NOT bring relief. Soon followed by..., yes..., those wonderful twitches again. And now I'm headed back into the place where my legs feel stiff. I also notice my mind is starting to get a bit foggy and I'm feeling uncoordinated again. Kind of shaky when trying to do things (like opening mail today.)I know that every new BFS dx seems to obsess about all sorts of other conditions but I can't shake my mind from the fact I may have MS and the only reason it's getting overlooked is that fascicualations don't usually play a part. I have blurred vision, vertigo, sporadic paresthesia, spasticity and the occasional heart palpitation. The vertigo and vision issues don't seem to be present with other BFSers. And sometimes when I wake up..., I can't feel my fingers/hands at all. Completely numb. I managed to spend most of the last couple months completely ignoring this condition and got back into a few things I love..., like whitewater kayaking. Getting back to the gym to exercise has been more of a challenge I'm afraid. I have ZERO energy and even getting myself to work is a victory in itself. I ordered a bowflex last week (yea yea yea, I know) in hopes that putting that in the office across the hall from my bedroom might give me the ability to start lifting again.My next follow-up is scheduled for next Friday at the Lahey Clinic in Boston. Funny timing.... I was thinking I'd get to strut back in feeling a lot better. I guess not...