Dealing with Major BFS Relapse

[diotz2]

I haven’t been on this site for years (literally) and John V was kind enough to reactivate my account since it had been inactive for so long. As with many others here, this site has truly been a lifesaver for me and not sure what I would have done without it. Anyway, I was doing remarkably well up with my BFS until 2 months ago and have since been dealing with a major relapse. I was hoping to get some advice, especially as I’m having the hardest time shaking my new ALS fears.First my quick background – 32 years old, 10 ½ years of twitching and BFS diagnosis from the Mayo Clinic back in 2003. Have an under-active thyroid (Hashimotos) and high cholesterol, but otherwise consider myself to be relatively healthy. My first 2-3 years of BFS were very challenging, but I slowly got better and have had a great past 6-7 years. I’ve still had infrequent muscle twitching since my BFS started, but a lot of the other odd symptoms (shaky muscles, tremor, brain fog, vibrating sensation, fatigue, exercise intolerance, etc) completely went away. I still have a flare-up or two every year, but they are very short lived and seem to resolve themselves relatively quickly in a matter of a week or two.This latest flare-up has really hit me hard. For the past two months I’ve struggled with a bunch of my original symptoms plus some new ones. My tremor is back, my legs are stiff, my brain is foggy, my muscles shake like crazy and I’m having intense twitching all over (85% in my legs). In addition, I’ve developed a cramping sensation (which I’ve never experienced before) throughout my body – arms, legs, feet, back, shoulder and neck. It feels like my muscles are burning from a hard workout and that they could go into a full cramp at any moment…but they never actually do. My sleep has been horrendous – every night is the same routine…no problem falling asleep but I wake up 2.5 hours later. When I awake my body feels really warm even though the room/covers aren’t. I have to let myself cool down for a good 30-45 minutes and if I’m lucky I then fall back to sleep for another 2-3 hours before waking again with the same routine. Usually a Tylenol PM helps me sleep through anything, but they have been completely ineffective in keeping me asleep. Another thing I’ve noticed is how sore my muscles are following a heavy twitching period. Yesterday my left thigh was twitching nonstop for a good 14 hours and today it is especially sore…and still twitching. Finally, the last odd thing, and sorry this is gross…my urine seems to be unusually foamy, maybe a little cloudy and smells strange too. I had a urine analysis and basic blood work done two weeks ago and everything came back normal.I’m wondering if this is all BFS – or if it sounds like I should make a trip back to see a neurologist and get reevaluated? And on the neurologist note…my EMG’s were done 10 years ago…are they still relevant or has too much time passed and I need to get another one done? I’m really struggling with this go-around and I can’t shake my fears of this being something really bad this time. Any thoughts or advice you may have would be greatly appreciated.Thanks,diotz2

 

[JohnnyRocket]

diotz2,Great to hear from an "old timer" like yourself.I'm glad to hear you had a bit of a reprieve over the last 6-7 years. I'm 7+ years in myself and my symptoms are still there every day although they seem to be lessened and I simply don't care any more.As for your list of symptoms, there is nothing I see there out of the ordinary and I've heard these things repeated by fellow BFSers more times than I care to count. Trying to relate your symptoms to a possible ALS cause is ridiculous if I'm being honest. It doesn't fit. Not remotely.Should you go back to the neuro for another EMG? Is your EMG still valid? My question is "Why does it matter?". Your initical clinical exam and EMG (not to mention the irrefutable pattern of symptoms over 10 years) provided the truth about your BFS diagnosis. One thing we know about BFS is that it can never and will never "turn into" ALS or anything sinister. As with most people from this community, the EMG's SOLE purpose is an attempt to relieve anxiety. So if your anxiety is out of control and you can't reason through it yourself, then maybe hit the neuro up again. Just don't fool yourself into thinking there is anything questionable related to ALS. There isn't.

 

[Gloria123]

diotz2,Just a few comments. First of all, I don't think you have to worry about &LS at all because none of your symptoms <except for twitching, obviously, as the rest of us> are related to the disease.Secondly, I honestly feel like sleep deprivation lends itself to way, way worsening symptoms. Now, I understand your relapse came first, and then you couldn't sleep, but nonetheless, sleep deprivation will make every symptom you described worse. Plus, if you didn't know already, Tylenol PM (which is essentially benadryl and tylenol combined) causes twitching. Google it, if you must - it's a known side effect. Stay away from it. If you're having bad sleep, go get a prescription medication to help you sleep. I use Ambien about once a week, a Xanax once a week, but the rest of the time I use something called Kavinase, that you can order online, that helps me sleep. But, I would suggest something like Ambien to get you back to a normal sleep pattern.I haven't a clue why you're waking up feeling really hot. That happens to me sometimes too, but it's usually because it's hot in my room. I open the window a little (I live in Colorado, so our nights are always cool) and can usually get back to sleep. Since you're not female, you can't blame it on perimenopause or anything like that, but perhaps it's related to your thyroid somehow. Nonetheless, your blood tests came back okay, so not sure about that...Anyway, I'm sorry to hear about your relapse. I'm having a bit of one myself. I go from almost no twitching on some days, to violent, crazy twitching. And yesterday/today, my calf that twitches the most has become really stiff. Of course, I'm a little freaked out myself, but know deep inside that it's nothing other than BFS nuttiness.Mitra

 

[diotz2]

Johnny and Mitra:Really appreciate both of your replies. Just having a tough time right now and hoping that things clear up a little here soon. It's really amazing how the symptoms change over time and how new ones always seem to pop up... Need to get this sleep thing figured out, because I know it's exacerbating everything else.Thanks again,diotz2

 

[BrantleyySamantha]

Hey!Im a old timer like yourself. I have just logged back on after many years for a bit of reassurance. Sounds like another flare up to me. I have just had a flare up myself. After a few years of being relatively twitch free. For the past 10 days my Bicep has not stopped twitching. Its the same spot everytime and whenever i raise my hand and hold something it causes my arms to start shaking. I also have cramps in my hands on this morning.Well this morning it all stopped, but my arm aches like hell from all the twitching.Hope your symptons subside soon too.

 

[sorincast]

I am sorry to hear about the relapse. Are you sure you don’t have/had an infection? This could explain the intense flare up of BFS. Better check for that. A follow-up MRI of the brain would be interesting, but I think that EMG is pointless. I am into BFS for more than one year and I have noticed that the symptoms vary greatly over time. Some improve and other worsen, so that there is always something disturbing me (twitching, tremor, shaking, pain, paresthesias...).It is interesting that you mentioned brain fog. This is a scary part for me and I had seen it mentioned only a few times in this forum. Short term memory loss, difficulty concentrating or learning... I wonder how it is related to BFS. Or maybe they are independent and have the same source.

 

[BlueWolf92]

I was also glad (in a misery loves company way) to hear I am not the only one who seems to have short term memory loss. I have always been known as the person who never forgets anything. Big reason my husband can barely tolerate me. BUT, now -- I struggle at times and I was beginning to worry about that (go figure). Could it really be this messes with that part of us as well or are we just temporarily so pre-occupied with thinking about our health that our memory capabilities are taking a back seat? I hope mine comes back soon or my trivia team mates may kick me off the team! NO!!!!!!

 

[RebeccayRoxanneyRoxa]

I have been twitching, burning, tingling and worrying since December 2007. This site helps with the worrying. I have times where the symptoms, especially the burning, is worse. I am going through such a time right now and it does interfer with my sleep. Some nights I wake up and feel as though I am burning up and I am drenched with sweat. Lately the twitching has been worse for me as well. But I take comfort in the fact that the symptoms seemt to cycle.And I have had it for so many years - I have developed some techniques to distract myself.I hope your severe symptoms pass for you. It is stressful to have weird things happening to our bodies and mind; and the stress increases the symptoms.

 

[diotz2]

Thanks for all of the replies - really appreciate them all. I thought I had experienced just about every BFS symptom out there, but the sleep and burning/pre-cramping issues (not sure which one it is?!?) are new to me after all this time. I decided to go see my neurologist again given that it had been 9 years since our last visit. He did the quick exam and said still nothing more than BFS. I asked about another EMG and he said definitely not. He did go on to tell me an entertaining story about how many neuros he has seen over the years who are convinced they have a dreaded disease - including one well-renown neuro who flew in on Christmas day a couple of years ago to be examined. He said he also gets regular muscle twitches himself and made me feel better that I wasn't completely crazy... My recent symptoms seem to be improving slowly. Sleep is still an issue, but I'm able to go back to sleep without too much of a problem now. I've also started with a handful of supplements and dietary improvements. I've been noticing daily changes in my symptoms and am trying to keep a food journal to see if there is any correlation. Finally, has dietary oxalate been discussed here? I'd never heard of it before, but my GP emailed me this link - . He said he wasn't in a place to endorse this, but that I might explore it a little bit. Seems counter-intuitive to me, but who knows?!?Thanks again for the support - this website has truly been a lifesaver to me.diotz2