2 Month Neurology Follow-Up Update

[BFSDiner]

Saw my neurologist for my 2 month follow up today.In the last 2 weeks my spasms have dissipated about 75% of what they originally were. However I began to develop pretty severe internal fatigue which was accompanied by pretty severe burning and aching in my thighs and legs. The rigid, cramped up calf that I couldn't even walk right on for the last 2 months, totally calmed down. Completely back to normal. Additionally my sensory issues involving my left foot also resolved. No more swelling/aching/burning there. For the first time in 2 months my most spastic area (the calves) all but stopped spasming. When I wake up, that first surge of "wakeful" (normal) anxiety isn't resulting in an instant wave of muscle spasms in my legs and arms.All of that has stopped.Maybe the burning in my foot has just migrated to my thighs. Maybe its something different. I dont know. Every day I wake up and shower, its not long before I am doubled over with fatigue. My weight has dropped 20lbs since September. My neurologist evaluated all of these things. Reiterated to me that ALS was "absolutely not" on the table. He also said MS was not a factor, and my EMG was not too early, as I have been having ongoing symptoms since February (albeit not spasms). In the end, he feels that its very possible I may be developing Fibromyalgia. Granted, it would currently qualify as mild, as proper Fibromyalgia diagnosis involves something like pain in 8 areas of the body for longer than 3 months, as well as pressure points. Obviously, there are many shades of gray. But he was pretty clear that many of my symptoms (and honestly a lot of the symptoms people here report) are consistent with early stage Fibromyalgia / Chronic Fatigue syndrome. He said there is a secondary possibility of Myositis or Polymyalgia Rheumatica though these two were much less probable given I have had normal CPK, SED Rate, ANA, and C-Reactive Protein. The possibility of Myasthenia Gravis is also unlikely as I have had sensory symptoms.He wanted me to know that what we're dealing with is therefore absolutely benign. It may be that some of us will have to deal with pain. Some of us will have to deal with migrating sensory issues. Many of us may have to deal with fatigue that is debilitating. But we can all smile because these things - even in a case of full blown Fibromyalgia - will not harm us. And we have no reason to worry about ALS or MS. He kept saying to me that this is a benign condition, which requires at most, symptom management. Rest. **Inflammation Management** <---- !! Some of us may have complete resolution, or recurrence, but its his opinion that what a lot of us are dealing with isn't some mystery condition. Fibromyalgia / CFS is heavily indicated with muscle spasms and twitching. Especially if one branches off from just spasms at all. It should be noted that Fibromyalgia can come on with spasms alone. And with all the shades of gray involved in these types of syndromes, one can stay at spasms and never progress, or progress to something much more advanced. Admittedly, doctors are not perfect. Sometimes make gross generalizations and huge assumptions. But I am much more at ease with the diagnosis of mild Fibromyalgia that may never progress (or may progress) ... than a diagnosis of "I dont know what this is, but its too early to say its not ALS". I am glad to have graduated past that stage, finally. ------------As a side note ... I know little or nothing about Fibromyalgia but he noted that I have been having sleep disorders lately too. With the onset of fatigue and muscle burning, I began having Sleep Paralysis again. He asked me if I have hallucinations and i was surprised ... and told him yes. I see things in the room when it happens. He asked if I am able to go back to sleep, and I had to admit that I usually am too terrified to go back to sleep. Have to turn on the light, and sit for a bit. Gather myself and clear my head. Come fully out of "sleep state" ... remind myself where I am. What is real and what isn't. And then I can go back to sleep.He is going to test me for Narcolepsy and has enrolled me in a sleep study. I know a lot of people here have sleep disorders, and I believe they are heavily associated with Fibro.Do we all have various levels of Fibromyalgia that may evaporate or linger ?

 

[Gracer]

Well, good to see that doctor confirms what we all know here - benign conditions might be debilitating even, but they never kill you in a slow death, and benign conditions might involve much more than just twitches.Sleep study is a good idea, but maybe I can reassure you a bit in advance, since if your only symptomes are hypnagogic hallutinations (and not falling asleep suddenly anytime during a day or not loosing muscle tonus abruptly because of strong emotions), it might be a symptom of severe stress too (my daughter for example is prone to sleep paralyses when she is really severely stressed and also sees a figures in the room, can not move on the edge of waking up etc. But this is transient in her case and anyway, there is a bunch of new drugs to treat those things - I was just translation some papers last year so still remember that narcolepsy and sleep paralysisi are treatable).Ask Chrissi again, as far as I remember, her diagnosis involves Fybro, I think, Mommylondodn and Plainslady are too diagnosed with that type of condition.

 

[christinasgirl123]

My doctor not diagnosed me with full-blown Fibromyalgia but with a CFS/fibro-related condition.He is a fibromyalgia /CFS specialist and said he sees patients with symptoms like that a lot, fasciculations and spasms are so common that he even wrote a whole secton about this on his homepage. There are actually a lot of people with Fibromyalgia or CFS that started out with a condition that is here called BFS. Or BCFS.Or-in Emilyomousey. Fasciculation myalgia craming syndrome. Tension myositis syndrome. Spasmophilia. and so on. You can throw this all in one pot . Also the causes...often a virus is involved, it also it can be stress, anxiety, medication, drug abuse or chronic pain that can throw a body in a state like that. Symtom Management in Fibro: Do whatever feels god for you. Mentally and physically. Listen to your body. RELAX. Do slight exercises like jogging and walking. Do not over-excert your body. RELAX .Watch the stuff you eat...sugar is a huge stressor to the body. The blood sugar changes that go along with the intake of it and the following insuline spikes are a huge stressor for the body (saying this while eating a nutella bun for breakfast.. ). RELAX. Try meditation or Chi Gong. Sleeping disorders related to Fibromyalgia issues can be treated with amitryptilline. But if you give your body and mind a bit time, it might as well disappear by itself. RELAX.

 

[jykomiA1]

Hello,I strongly beliefe that BFS/BCFS/Fibro is all the same crap. My neuro also told me that twitches are so common that it’s not even worth to think about it.You can be sure that there is nothing serious going on. I went through the same hell as all the others, but I am completely fearless now. I am just afraid of the pain that follows my workout You will see, time is the best healer and all the veds are right. This thing is annoying but we all share it with you. Try to relax as good as you can.Issi

 

[queenofthelake]

Good news TwitchBFS!!!I was reading and something called my attention! what kind of hallucinations you have? and when?I have had for a long time something that I thought it might be normal but now that you say it... is it related to bfs itself?In my particular case when I just wake up (lets say half sleep half awake, like when you need to stand up and go for water, or go to the toilet) I tend to see human figures!! I remember I was scared when I was about 15 years old and I used to wake up at night and see in front of me a shape like a person (a shadow) and after about 2 seconds it tended to dessapear. One day I remember I saw a really huge grasshooper on top of my bed (about 50 cm long) and in full color!! i jumped out of the bed and ten realized there was nothing there... so i just undestood that I tend to see stuff when I am in that state of mind. Nowadays I am not sure if I have seen anything like that recently as I am not really concerned about that, but, now I think that BFS might be caused by a sleep disorder. A friend of mine who is a neuro surgeon student told me not to worry about fasciculations because they are very normal when you do not have proper sleep, he told me "Whe I need to study too much and I dont sleep well I tend to get the fasciculations in my eyes as well, but after sleeping properly I find myself ok"On the other hand my sister told me once she has sleep disorders, and se told me that she thinks I have it as well because I tend to talk when I am asleep.have people here tried taking melatonine? In general the more I relax before I going to sleep the better I wake up in the morning.My advices to sleep better:1- Take a shower before sleeping.2- look in youtube for videos to relax, metitation or something that works for you.3- there is a song which is meant to be the most relaxing song ever. is called wheightless from marconi union i have made a list rerpeating that song about 8 times .. is that maybe the reason why i am feelling better? not sure, but it is worth to try! isn't it?cheers.

 

[queenofthelake]

Good news TwitchBFS!!!I was reading and something called my attention! what kind of hallucinations you have? and when?I have had for a long time something that I thought it might be normal but now that you say it... is it related to bfs itself?In my particular case when I just wake up (lets say half sleep half awake, like when you need to stand up and go for water, or go to the toilet) I tend to see human figures!! I remember I was scared when I was about 15 years old and I used to wake up at night and see in front of me a shape like a person (a shadow) and after about 2 seconds it tended to dessapear. One day I remember I saw a really huge grasshooper on top of my bed (about 50 cm long) and in full color!! i jumped out of the bed and ten realized there was nothing there... so i just undestood that I tend to see stuff when I am in that state of mind. Nowadays I am not sure if I have seen anything like that recently as I am not really concerned about that, but, now I think that BFS might be caused by a sleep disorder. A friend of mine who is a neuro surgeon student told me not to worry about fasciculations because they are very normal when you do not have proper sleep, he told me "Whe I need to study too much and I dont sleep well I tend to get the fasciculations in my eyes as well, but after sleeping properly I find myself ok"On the other hand my sister told me once she has sleep disorders, and se told me that she thinks I have it as well because I tend to talk when I am asleep.have people here tried taking melatonine? In general the more I relax before I going to sleep the better I wake up in the morning.My advices to sleep better:1- Take a shower before sleeping.2- look in youtube for videos to relax, metitation or something that works for you.3- there is a song which is meant to be the most relaxing song ever. is called wheightless from marconi union i have made a list rerpeating that song about 8 times .. is that maybe the reason why i am feelling better? not sure, but it is worth to try! isn't it?cheers.

 

[BFSDiner]

Want to try and reply to everyone so I apologize for once again being so verbose:1) Regarding Narcolepsy: I dont think I have that either, but my doctor got a really big boner when I mentioned sleep paralysis. He was rolling his eyes and yawning at the mention of 20lbs weight loss, fatigue, and muscle aching. Couldn't get him to stop looking at his watch. (in hindsight this is a good sign for my fears of ALS, etc). But when I said sleep paralysis, suddenly he perked up like a little kid who'd just been offered chocolate cake. The sleep paralysis happened when my mysterious fatigue was at its worst last week. Which makes sense. It happened to me when I was in high school too. I could predict when it would occur. Only when I was fatigued to the bone. That deep, penetrating exhaustion. When I was healthy back then, this only went down after several days of poor sleep. Last week it happened as a result of whatever is causing my fatigue. 2) Yes I see things in the room. Sometimes its strange things like a sign on my wall that isn't really there. Usually its a person, or a being of some sort. If you google sleep paralysis you'll read tons of stories (usually mystical in nature) about the beings which appear. Last week, there were two small, white "beings" standing next to my bed. About 2-3 feet tall, just looking at me. From what I have read, the paralysis causes our brain to decide that we are being held down. Because its the only association our brain can come up wth as an explanation for being unable to move. Therefore it generates a person in the room, to explain the confusion. Its a very, very terrifying experience either way. Always accompanied by a rush of overwhelming pricking/tingling over the whole body, then a roaring rush of noise in my head that gets louder and louder. I am then aware of what is going on, but can not move my body. One time my comforter was wadded up around my neck and I was hallucinating that I was being strangled. All of this is totally normal for sleep paralysis events. Honestly I find them fascinating. There is no dream you've ever had that is this "real" or terrifying. At this point I am faced with the decision to try and "Jar" myself awake, or let it "Take over". And that's the scary moment. You feel like you're in a struggle with the threat of dying. You can succumb to the sensation or you can resist it. (sooooooo dramatic lol) ... After I manage to wake myself up, the hallucinations linger for a solid minute or two. I usually have to get out of bed, turn on the light, and just sit there as my brain comes out of the "cloud" fully. Its so strange how reality completely changes. Just moments before you were staring at a being next to your bed, and now it seems ridiculous. 3) Fibromyalgia is technically another umbrella diagnosis like BFS ... basically saying they dont know what causes it, but it definitely exists, and it isn't going to kill you. Thank you baby Jesus! .. But I can't tell you how huge it is for my mental state to have a name for it, rather than be told "Its probably nothing but keep checking for at least a year or two to make sure its not ALS". That type of thinking is what made me keep looking, and looking, and looking for answers. Since leaving the docs office, for whatever reason, I have had total peace. So its a mild Fibromyalgia of some sort that may come and go, may never come back, or may get pretty bad. Okay. Now I have something to work with. Now I can learn how to care for my body. Learn what foods to avoid. Learn the importance of sleep. Even learn techniques Fibromyalgia folks use pertaining to Naps. Learn the INSANE importance of keeping physically mobile. Learn that not doing so will cause things to get much worse. Learn how to exercise to tolerance, and learn the value of slowly building upon each workout to progress to greater levels of strength. I've already discovered Quercetin and its unbelievable anti-inflammatory effects. That stuff makes me feel so calm, and so at ease. In combination with 1,000mg Vitamin C (they work together synergistically somehow) ... its a daily thing now. And it really helps. Now I feel like I have something to work with. Rather than a pile of unknowns. And even if this ends up not being Fibromyalgia ... somehow I have mental peace now and didn't have it before. Because its not MS. And its not ALS. For those of you who enjoy learning and being proactive, who think this may be somehow Fibromyalgia related: is a great bunch of articles to read. 4) Are the hallucinations related to BFS / Fibromyalgia / CFS. Probably. The simple fact is that medicine doesn't know much about any of these conditions. I get pretty severe depression since this all started in February - for absolutely no reason. I've never been like that before. Fibromyalgia was until recently considered a strange side effect of Depression. Which is so interesting to me because muscle pain and emotional depression seem so unrelated. My brain starts wondering about Dopamine and Serotonin at that point. In any case, all of this is brain related, so hallucinations can probably fit in there somewhere. For sure if associated with Sleep Paralysis, as that's very common with Chronic Fatigue Syndrome (CFS). Fibromyalgia also comes with extreme fatigue sometimes. And that's when I get my Sleep paralysis. There is some correlation between all of this and sleep disorders because sleep is controlled by the nervous system and brain. Melatonin actually made me more tired and was a bad idea for me when I was already fatigued. If anything I need things to perk me up on those days. Caffeine is bad for Fibromyalgia folks.Here's a twist: Thanks to God for a condition that won't kill us which simultaneously forces us to take better care of ourselves. BFSB