New Twitcher in San Jose

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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New Twitcher in San Jose

Postby mina on August 24th, 2004, 3:02 pm

Hello Everyone,

I am so glad that I found this site because it seems there are so many out there with the same fears I have. Here is my story :

-9 months ago, I started experiencing chest vibrations during sleep only which would wake me up. I mentioned it to my OB doc one time and he told me they sound like muscle spasms. I have been having this practically every night (and is still happening) and the vibration stops as soon as I get up and move around.
-Now I don't know if the rest of what I have been experiencing here is related to the above but here goes:
-In June -- dizziness, lightheadness, sometimes feeling of pressure behind eye. The lightheadedness would get worse with eating. I also noticed when I press the back of my lower head (brainstem area) I felt like I was on a boat (seasick). Went to doc and had blood tests and general exam. Everything seemed normal. So this went on for about a month.
-Around end of July, I started to notice some pain in my face (right side) and my lower eyelid started twitching. Since then, the twitching spread throughout my whole body. Here and there, everywhere. It's driving me nuts. And of-course I did the same thing everyone else did here -- look up the symptoms on the internet and now I am thinking ALS.

Besides this twitching thing, the only other symptom I have is some discomfort/pain in different muscle areas. I sometimes feel like my left arm is weak but not sure if it really is. I don't have trouble doing things I normally do. However, my body does feel sore alot, especially when I go up the stairs - my back legs feel sore (like as if I exercised alot).

I went to see a neurologist and passed the neuro exam. She didn't even think it was necessary to do a EMG, MRI, etc. I also had more blood tests done and found I am really low on ferritin (iron stores). The doc felt I may have something similar to RLS but I don't understand why I have all this muscle twitching. She gave me mirapex but I think it's worsened my symptoms because I woke up the past two days with pounding muscle twitches on my right arm (like my muscles were shaking).

So........does this sound like ALS, BFS, or something else? BTW, two years ago, I was diagnosed with cervical brachial syndrome (the type you get with neck injury), tendinitis, and sprained rib. I am scared to death of ALS.

I am a single mom with a 5-year old and so worried no one will take good care of my son if I am gone.

Thanks for listening.
mina
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Postby Ava on August 24th, 2004, 3:57 pm

Hi Mina,

I'm a married mom of 3 living just north of you in Burlingame and I am twitching too. You can see my story all over this forum but I have been twitching all over for 4 months.

It sounds like you have bfs to me. What did your neuro say? Did he diagnose you with it? The "official" diagnosis of bfs from an experienced neuro goes a long way toward reducing the ALS fears. A neg. emg helped me too.

Keep in touch and continue to read and post for support.

Ava
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Thanks Ava

Postby mina on August 24th, 2004, 4:05 pm

Thank you Ava.

I just called my neurologist and scheduled myself for a EMG this Thursday. I think I need to do this given the last two episodes of violent twitching
in my arms. I am scared to death.

She hasn't diagnosed me with anything yet.

Were your twitches small or large? I am glad you had a normal EMG.

Mina
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Postby Stephanie on August 24th, 2004, 9:28 pm

Sounds like bfs to me. As I sit here I am having strong twitches in my left upper arm and calves. I get them all over. In als the twitches are so faint the patient usually never notices it (that's if they twitch at all-usually profound weakness is first symptom). Twitches w/out weakness is not consistant w/als either. I know you said you feel possible weakness but that doesn't count. With real weakness you are unable to use a hand or leg. Even then that doesn't automatically mean als, it could be a lot of other things. Young women are also the least likely to get the disease. It is VERY rare to get it at all. I am glad you are getting an emg. A normal emg means you definitely do not have als. If you have a cervical problem it may show up on the emg and that could be the root of your twitching. A normal neuro exam like you had would not happen if you had als. None of your other symptoms are consistant w/als either. You will be fine and I'm glad you don't have to wait long for your emg and peace of mind. Hang in there. As a mother of 2 cute little monsters I understand how you feel. One word of advice: Never ever read another als website again!!! EVER!!! Most of us have made that mistake and have suffered because of it. It doesn't matter what disease you look up - you will always find some symptom you can relate to.
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chest vibrations

Postby eric on August 24th, 2004, 10:53 pm

I had that feeling like my chest was vibrating when asleep and stopped when i awoke.
that was for me lyme disease, I had jerks of the hips,tremors and all sorts of things.
check out tick born and vector born diseases.
eric
tick born is treatable!
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thanks steph and eric

Postby mina on August 24th, 2004, 11:39 pm

Thanks guys. You people over here are wonderful.

I am nervous about my emg test on Thursday but all I can do is pray and hope for the best.

It seems both of you went over this hurdle.
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Mina

Postby graberc on August 25th, 2004, 6:45 am

Mina,

Your syptoms sound very simmilar to the ones posted here. I've never personally been woken up. . but I have had lots of twitches of varying types. . . .

When you get your EMG etc. . .I would also be sure to explain your current anxiety to the physician.

Most people on this bored, even with a clean EMG, can not get their mind off of this disease. Sometimes this anxiety can affect your day to day interactions with people. . .if this is the case I would look into anxiety meds (such as zoloft) that have helped a lot of people onthis board.

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vibration during sleep

Postby eric on August 25th, 2004, 7:34 am

I dont think that anxiety is an issue here, this term is used when people are concerned about there health, and bieng concerned is very important! I believe that anxiety does not cause what is mentioned here. i8nfection can! and that is the truth, by the way for every one that is one this board dont tell someone to go on a phsychiatric drugs to try to stop them from listening to the tunes of there bodys. also everybody on this forum is trying to find a cure and so far 4 people have reversed there symptoms by following there heart and taking a stand for themselves. other people on this forum are thick headed and trust the doctors instead of themselves and that is very worrysome because some of these problems of bfs may be cured, but not for some of the people on this forum, they just wont listen,they know it all. I feel strongly in my heart that alot of you are suffering from some sort of infection that is not detectable because it is in the nerves and not blood which makes it impossible to detect . sd if they cant detect it does it mean its not there , it just means that within there parameters doctors cant find whats wrong and have brushed you aside. as for benign get that in writing!
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to each their own

Postby graberc on August 25th, 2004, 9:10 am

To Each their own, but for me I trust a trained Neurologist, GP, and people who live breathe and study such conditions. . .(including the famous Mayo Clinic Report).


I think the common theme here is to get over this Trust your docotr.

AND . . .

anxiety makes twitching worse. . .there is a connection.
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Postby Barb916 on August 25th, 2004, 10:24 am

Hi Mina,

I can totally relate to the chest vibrations thing. My twitching started about 4.5 months ago but before the twitching was the vibrations. I would wake up in the middle of the night and think, "why do I feel nervous". It was just like a nervous/shaking feeling in my chest. Is that how yours felt? Also, it would only happen while sleeping as well and it would be there when I woke up in the morning. Once I got out of bed..GONE. What's up with that !

I saw a neuro about 2 months into twitching and I told her all about that shaking/nervous type feeling in my chest and about all my twitching. Bottom line, I had a clean neuro exam(with the exception of a slight weakness in my r. hand - but neuro was not concerned). I did have an EMG a week later and it was clean too. I'll bet yours will be fine as well !!

I have 3 little girls so I know that horrible feeling your talking about when we let ourselves get all wrapped up into reading symptoms on those BAD web sites..you know the ones! I don't even want to say those 3 letters.

I'm still batteling my fears about all this but coming to this website had helped and I'm sure it will help you too.

Good luck on Thursday and keep us posted ! :)

Take Care,
Barb
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Re: to each their own

Postby eric on August 25th, 2004, 2:04 pm

graberc wrote:To Each their own, but for me I trust a trained Neurologist, GP, and people who live breathe and study such conditions. . .(including the famous Mayo Clinic Report).


I think the common theme here is to get over this Trust your docotr.

AND . . .

anxiety makes twitching worse. . .there is a connection.
I know that you must have a brain somewhere in that thick head! you trust doctors and thats just what they want.you to think. you are not smart and I dont mean to attack you but your intelligence leaves alot to be desired. you are hurting people and that is the truth. I want you to get in writing from all your doctors that you dont have a tick born or other infectious disease. do it ! see what happens. they wont do it. and because your mind may be compromised by this illness , you are vulnerable to the doctors diagnoses of a benign condition that truly may not exist. as i said before get it in writing that you have a benign condition and no further harm will occur and you will see your doctor run!
now I dont have time to quarrel with you because i am better and you arte not!!!
I wish the best
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vibration (part 2)

Postby Slavin Balen on August 25th, 2004, 2:08 pm

I can feel vibration INSIDE my right forearm and it lasted for 3 weeks. Visible fascilutions I have on my back and neck.
Today I noticed very, very little fascs on my right hand. I can feel it but I can't see it. And I have also CB syndrom. Meaning C5-C6 bulging & discs hernited. My neuro Dr. send me tomorrow in hospital testing possibility of Lyme desease because I was bitten 3 times by (infected?) ticks 2 years ago. I'm in panic! Does it look like a beginning of ALS!?
Every minute I'm thinking about my clean EMG which I've done a month ago. I know that a good EMG is valid at least one year but my unconscious with all fears inside my head is dominant.
BTW, Stephanie you give a reassurance to all of us. Thank you.
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Re: vibration (part 2)

Postby eric on August 25th, 2004, 9:55 pm

Slavin Balen wrote:I can feel vibration INSIDE my right forearm and it lasted for 3 weeks. Visible fascilutions I have on my back and neck.
Today I noticed very, very little fascs on my right hand. I can feel it but I can't see it. And I have also CB syndrom. Meaning C5-C6 bulging & discs hernited. My neuro Dr. send me tomorrow in hospital testing possibility of Lyme desease because I was bitten 3 times by (infected?) ticks 2 years ago. I'm in panic! Does it look like a beginning of ALS!?
Every minute I'm thinking about my clean EMG which I've done a month ago. I know that a good EMG is valid at least one year but my unconscious with all fears inside my head is dominant.
BTW, Stephanie you give a reassurance to all of us. Thank you.
Slavin


you may 95% have lyme, we you treated, 1 month is not GOING TO STOP IT. lyme causes bfs it is known, the problem is it is now autoimmune, get on antibiotic now. and get a lyme doctor now. if you dont you will have big problems. lyme is an infection of the brain and not easily cleared. treat as if its lyme!!
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Postby Stephanie on August 25th, 2004, 10:50 pm

My brother who now has MS had the highest lyme titer in his spinal fluid that any of the Dr's at the hospital had ever seen. I've had it twice about 15 yrs ago and although I test neg for it now both in blood & spinal fluid I think that is what causes MY twitches (I have other chronic Lyme symptoms as well). Lyme can hide in yor body if you've had it for a long time and not show up in lab work. It can come out when your body is stressed (in my case pregnancy). Having said that, not everyone twitches because of an infection. Some people just twitch for no known reason just like some people seizure for no known reason. You can't just take antibiotics to treat twiching- that's what causes resistance to AB's and is why a lot of AB's don't work anymore. Lyme is a clinical diagnosis that must be made by a qualified Dr. You can't tell people they are stupid for believing in their Dr's. While I've seen my share of Dr's that I can't believe made it through med school, you have to find one you can trust and believe in. There are plenty out there.
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Postby Arron on August 26th, 2004, 12:34 pm

eric, you need to mellow-out! There is no evidence showing BFS to be Lyme disease, and many of us HAVE been on heavy regiments of antibiotics for other ailments, and some for as long as a year for such things at TB. The same antibiotics used to treat Lyme, and guess what? Still twitching. NO ONE KNOWS what causes or what cures BFS yet. The answeer is out there, but it hasn't been found yet.

You can not come on here and spew negative things about people by saying they are thick headed or that YOU know everything and how to cure BFS. If there is a cure, then why don;t you "follow your heart, do it and consider yourself cured and move-on outta here.

The fact of the matter is, there is no "cure" or treatment for BFS yet, and there probably won't be for quite some time, because researches have a LOT more important things to do than waste their time to find a cure for some BENIGN condition while in the meantime, people are being diagnosed with AIDS, cancer and even ALS on a daily basis.

I have done more research on BFS than probably any one doctror at the Mayo clinic, and I am no where closer to an answer than anyone else.

You can not find an answer or a cure by "following your heart". You can "believe" anything you want and have your own opinions about anything you desire, but you can not come on here and attack people because they don't believe what you believe. That is how holy wars are started and there's already enough of that crap going-on in the world already, and it's all over differences in opinion. Kill all who don't follow Allah. There's only one god according to the Christion bible. Indians believe in maay gods. There's Buddah, "non religous evolution", The Darwin theory, the big bang theory and how many other "opinions" are out there? Is any ONE right? If so, I need to see some hard proof first hand then, and not some words from some book written a couple of thousand years ago by people that thought fire was magic, or by seeing some half ape / half man being that lives in the forest. Don't even get me going on that stuff.

I AM intelligent. I run several businesses at a time, and am quite well-off, and I didn't get here by being stupid or "thick headed. If you want to down play someone's intelligence, then look in the mirror.

Out of the thousands and thousands of highly trained, highly skilled neuro's out there, and ALL of the doctors, and ALL of the actual people that have BFS who have tried about everything under the sun to even relieve their symptoms with no "real" success, you think you have THE answer for the cure or a treatment, and it's Lyme and a long regiment of antibiotics? Go ahead and make yourself resistant to antibiotics by taking them when you don;t need them and see what happens. You can LIVE with BFS, you can not live when you have an infection that you can;t get rid of because you screwed around and tried taking a years worth of antibiotics and made yoruself (and probably certainb organism's in your body) drug resistant!

I'll tell you what, let's put your money where your mouth is. Go get your antibiotics and take them for a year and when you are done, I will pay for your neuro examination out of my own pocket and have you watched to see if you still twitch and are indeed "cured" from BFS. If you are, then I'll post the cure on this web site and get rid of ALL of the useless information on it that "thick headed" people have posted over the years, and we'll be sure to alert JAMA and the entire medical community that YOU have now found the cure for BFS so everyone can get started on their antibiotic regiment as soon as possible. Until then, you'll have to mellow-out and be nice on here or I will delete every single one of your posts, terminate your member status and block your IP address from being able to even access this site anymore. I will NOT put-up with someone "attacking" people on here!! End of story.
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