Living Life with BFS

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eyennyGlimmer

Well-known member
Hi guys I hope all of you are well. I was doing great, my man home and we bought a boat and just pretty much been having a great time. I still have twitches, not as bad but still there. I still have a jumping left bicep when I do a downward curl, still have tremors, still have those bug or tiny bubble sensations all over. I was fine with this and just realized these are my symptoms of BFS, no biggie. Well went to a neurosurgeon today because my back is giving me trouble, as always..no biggie but the biggie is this....He said to me, you have hyper-reflexes only on your left side. I said yes I know this, he said, hasn't anyone done an MRI, I said I cant have one because of my defib implant and no CT scan dye because I am allergic. He said with hyper reflexes like yours that usually means a brain lesion....of course I freaked and still am, cried all the way home. I said do you think I have MS, he said, not really as you dont fit the criteria. He said however your branskis reflexes are -1, I did not think much of this as I freak when something touches the bottom of my foot and I was tightening up and moving before he even did it...ANyway I do not recall anyone on here having hyper reflexes only on one side...I still have the bug sensations all over..You guys I am so scared. I just came back from appt and my husband came home early from work and he is sleeping and I do not even want to tell him this. I cant go through this again, just when I was moving on. I really feel that something is wrong now..What do you guys think about this, bad or good I want to hear it...Thank you..Hugzzz..Jenn
 
You have had these symptoms far to long without any progression for it to be anything serious. I believe that a lot of people on this board have hyper reflexes on one side. I think that we forget that we are so in tune to our bodies and what our Dr.s say, but most people are not. They don't know or ask how their reflexes are. My husband twitches like crazy in his feet and calves--he did not even realize it until I looked and told him. He could careless and he gets alot of cramps, too. Me on the other hand notice ever little twitch or movement. What is the Dr. recommending for you? Don't Worry!!
 
Yeah Jenn... try not to worry!! You and I have very similar symptoms. I do not have the hyper-reflexes thing, but I DO have the obnoxious tremoring & twitching muscles, etc. I have had all the MRIs, and there are no lesions. And I suspect that you don't have any lesions either!! I think that both you and I have BFS AND essential tremor (which apparently, is a rather common combination).

Try not to worry!!! (easier said than done, I know ;) )

Garth
 
Jenn. I have hyperreflex too but on both sides. Since you have had this stuff since for a while and it had been better, you do not have a brain tumor. Brain tumors don't get better. They usually have a progressive course downward with other symtoms other than what we have. Time for a Xanax or Klonapin and see another doctor.

Chip
 
Jenn,
First of all I would get rid of that doctor, what poor bedside manner. What did he recommend when you told him you couldn't have a ct or mri. Did you ask him what kind of lesion he was talking about. I can't believe he would mention that and not give you any explaination or recommendation. He sounds like a GOOF.

Try to relax, and get a second opinion, this I am sure will make you feel better.

Terri
 
Hi, Jenn. I guess the boinking philosophy only last for so long, I will have to rethink it as a cure-all. ;)

Jenn, what is the most important thing that you have learned since bfs raised it's head in your life? That's right, how do YOU feel. Doctors say all kinds of things, they are people. Learned people to be sure, but just the same as you and me. So...how do you feel? It sounds like things were tickety-boo until the Mr. Neuro pushed the alarm button. I've done that on my car. The other day I could hear a tooting alarm horn, and I was getting rather annoyed. I thought, "what the h-e-double hockey sticks, why doesn't that moron shut his car alarm off?" The hilarious thing was, my key fob, which was in my pocket, accidently pressed against the table edge and I had set my own car off. :oops: Was the car in trouble?..."no." Neither are you.

Personally, I would get on with enjoying the summer and forget about more opinions, as yours is the only one that counts. If the boinking indoors isn't working as well, you might start trying it in public places. :D)

Basso
 
Thanks guys so much for responding so fast. I have been in tears all evening and my husband is right by my side, God Bless him.. The Dr. said that he thought I should go back to my neurologist. He said, one sided hyper reflexes usually means a lesion on the brain. Those were his exact words. I said to him, do you mean MS, he said it doesnt look like MS but you could still have a lesion on the brain and MS is a tricky disease. He said he was going to take care of me for my back but I needed to see my neuro again. I told him that the neuro I saw months ago saw that I had one sided hyperreflexes and he did say, well they know more about that then me, I am the surgeon but I still think you need your brain looked at. I do still have a jumping left bicep on the dowward curl and my hand bounces some when I go to put a glass down, I think that is clonus...I dont know. He suggests to ask my neuro for a spinal tap and then if that shows nothing than go from there.

I am so upset right now, I cannot even eat dinner. I know my left arm is messed up so when he said that to me I lost it...

Basso, you make me smile and cry at the same time..lol..A little emotional right now ;) ..Thanks guys but I just dont know why reflexes are on one side... :crying: Hugzzzz..Jenn
 
Hi Jenn,
First of all, brisk reflexes are very common in people your age, especially on the anxiety-provoking doctor's exam table. I have them also.

Let's try looking at this from another angle, ok? Perhaps you really are having issues with your back, since that WAS why you were seeing a neuro-surgeon in the first place.

OK, so supposing it would be perfectly normal for a bfs-er to have brisk reflexes on both sides, now introduce an injury, a disc problem, a stenosis, or some other common problem with your back, which could actually lessen your reflexive response on one side. Considering it from THAT realm of possibility, it wouldn't be so abnormal for you to have asymmetry of your reflexes from right to left. Brisk on one side, decreased on another.

There have been others here who have had asymmetrical reflexes.

And, I'm not sure what he said about your Babinski reflex? It's usually either positive or negative? What did your toes do?

As for clonus, did your doctor actually TELL you that you have clonus, or are you self-diagnosing? If he didn't say you have it, then you don't have it. He already told you your reflexes are asymmetrical, what reason would he have not to tell you if you had clonus?

There are so many reasons why you could have this "abnormality." It could be an injury, it could be a peculiarity of your anatomy, it could be examiner error, it could be nothing. Jenn, with your cardiac history, you could have even had a very minor stroke that left you with no serious residual damage. This could have happened before you got the AICD placed.

I'm not trying to scare you here, only to tell you other things this could possibly be. I know of someone who is young, vital, and enjoying a very wonderful life, after having a rather serious stroke just a few years ago. She couldn't play her guitar for several months, but with rehab and recovery, she is now doing perfectly fine. I'm sure her reflexes are asymmetrical, too.

I've often said that if we test the population of the entire world with all the skills and technology we clinicians possess, we'd get 10 different results for 10 different people, none of which are perfectly "normal."

While it might not be prudent to ignore the fact that your reflexes are asymmetrical, you have been bumping along just fine with this, just as you were. MS has a relapsing remitting pattern, which you do not have.

I'm not sure if this helps you or not, but try not to worry until you have good reason to do so.

Hey, I had a patient in the hospital yesterday who was admitted with severe neck pain. Just woke up in the morning with it. Youch. She had regrettably been told by her doctor that it could be a metastatic bone lesion from a primary breast cancer she'd had years ago. She was very angry that the doctor had even suggested the possibility, and was, understandably fretting and freaking out.

I spoke with her for a very long time and told her exactly what I've told you. There are so many other perfectly viable reasons why she woke up with a sore neck. Heck, it happens to me almost once a week. I encouraged her not to ruminate on the fearful diagnosis until it was thrust upon her by a confirmed diagnostic test or told her by a qualified practitioner. I explained that some doctors have a need to present the worst case scenario.

She was discharged home this morning, feeling much better, and totally cancer free. Yet, to speak with her yesterday, she had herself practically dead and buried, all because some doctor had to go and open his pie-hole. :mad:


Blessings and hugs, my friend Jenn...
Sue
 
Jenn sorry to see you in this medical spiral, a situation I am unfortunately very familiar with. Within the past four years I have been misdiagnosed with pancreatic cancer, pheochromocytoma, mastocystosis and MS and know very well how crazy and frightened this can make one feel.

Suggestion: IMO, don't try to bite the bullet and deal with this latest "diagnosis" alone BUT get your Neurologist on board as soon as possible, relate what the Neurosurgeon mentioned and bring closure to this issue expeditiously. Prolonged worry and anticipatory anxiety will only make this latest situation overwhelming. Please let us know what your Neurologist has to say about the Neurosurgeon's findings. Best regards, Carl
 
Oh Sue, thank you so much. You always make me feel so much better. You are right and no my Dr. did not say I have clonus, I did not show him that but yes was self-diagnosing. I wouldnt be freaking out so bad if it was not for my jumpy bicep, which has been since the twitches. My toes, I do not know if they fanned, all he said was a negative 1, although I hate people touching the bottoms of my feet and especially with something so I was moving them around quite a bit and he did it while I was doing that but he did say negative 1, so with this and the reflexes I am worried about a lesion. Could you tell me what the toes are suppose to do? He never told me but like I said I was tightening up when he was coming for me and even squirming around knowing he was going to touch my feet.

I am not worse, I feel like I was getting better. I have no eye problems, I just saw an eye Dr. and he dilated me and saw no problems with my eyes. I am going to try to calm down, just so hard after what he said but like you said, I could of been that way or there could be many reasons...God Bless and big hugzzz..Jenn
 
Jenn,

I agree with everyone. You have been doing well and asymetry in reflexes is not totally uncommon. It could be caused by many different things that aren't serious.

Also remember the dr told you you don't have the criteria for an MS diagnosis.

Go to your neurologist and get answers from him. Also listen to Suziq she knows what she is talking about.

All the best,

Luke
 
A negative babinski is normal. YOU ARE NORMAL!! You don't want it to be positive that is abnormal. If your big toe goes up that is abnormal. If your toes go down that is normal. It is even normal if they do nothing. What did the neuro recommend? Does he want to do other tests?
 
Hi Jenn,
The toes would go up and back and fan out with a positive Babinski. With a negative test, the toes generally curl up. If he said yours was "negative" anything, then no worries, there.

I know that going to doctors can make you insane sometimes. Like Carl, I was misdiagnosed with MS and have lived to tell about it. :confused: And, I don't have it. :D)

Doctors aren't perfect, and they have to cover their butts.

Just hug your honey and let him help you ride this one out. It must be nice to finally have him home. Hey, give him a big hug for us, too, 'k? First, for serving our country with such bravery, and second, for taking such good care of our sweet Jenn.

Blessings,
Sue
 
I see you joined this board about a year ago, and I'm sure you were having these symptoms longer than that. If you've had MS this whole time, you obviously don't have Primary progressive, and if it's relapsing remitting than you should have had several remissions in this amount of time. I have heard of people living with MS for a long time without knowing it, but these are only people who are very lightly affected by the disease, if hardly at all. If you have that kind of MS (which you DONT) then who cares? And you didn't have these symptoms out of anxiety/etc this whole time and all the sudden have them because of MS...

If they were benign THEN they are benign NOW, if they were MS THEN, you have such a very very weak case of the disease, it won't hardly affect your life at all...and that's the worst case scenario here!
 
Jenn,

I wanted to let you know that I have the bug crawling sensation also, I have had it for 6 years now. My brain MRI so far are normal, just recent one was this April. The first one was last April (06). My c-spine is normal except for a bulging disk at C-3. You, like me also, have this all the time, it never goes away, so its not remitting by all means. Have you ever had a brain MRI? My neuro told me that she thinks that all my problems are a post viral thing, being that I was very sick a few months before all this crazy stuff started. I worry about MS all the time, but after all these years I figure if I do have it and its not showing on the MRI yet, then it must be mild. Please, take a deep breath, and relax. Enjoy your time with your hubby :D) Take care, and I hope you feel better soon

Jen :D)
 
Hey Jenn,

That doc was a nut job. My general neuro I was seeing before the specialist is a ms person. Ms almost always starts with the vision. Also the lesions cause the symptoms. You have had bfs symptoms for to long to be MS. If you had MS this long without treatment you would be worse off by now. I also have a very twitchy right bicep & a bad back. Almost 24/7. My right side is worse then my left. I have had hyper reflex's. Any decent doc knows the dif between hyper reflex's and anxiety. You said you tightened up before the babinski. Sounds normal to me. What did he do? was it an actual babinshi?

Do you have periphreal neuropathy in your feet?

Also I am not an expert in defibs but I seem to remember that they, along with any heart conditions cause symptoms more on the left side.


Chaulk this up to a very bad appointment and try someone else. Remember they are practicing medicine until they get it right.

DD
 
Good morning guys! MY BABINSKI IS NORMAL??? PHEWWWW. I am crying I am so happy. The way he said it, and when he said negative I thought that was bad..oh my..I think I had a dyslexia mental moment..lol.. So Sue you are right, nothing has changed from my last two neuro appt's then.

Jenny- You have the bug crawlies all the time too? THat is so good to hear, well it isn't but you know what I mean.

I did ask the Dr. about MS and he did say I dont think you have MS, you dont hold the typical symptoms but he did say I would still be interested in what your brain xrays look like. He said there could be other lesions but not have MS..so this is what is scaring me. The Dr. was 75 years old and could barely walk himself..sweet man though. He spent an hour with me talking about all my illnesses and he said, boy I wish I had students in here because you could teach them things, very interesting how your illnesses link together. He also said he thinks I had this from birth and was made this way because of my heart disease, which made me more confused because first he said this, then he said lesions. He said the potassium and sodium channels are not right, the second Dr. to say this. Then when he got to my reflexes I saw his face and he dropped his hands and said, hasn't anyone done a brain scan, I said no, he said well they should. I was like ohhhh boy..That is when he said usually hyperreflexes are from a brain lesion when you have them hyper on one side. So I freaked and I guess when he said negative babinski I was thinking bad already or not thinking :confused: .

THis is crazy and you guys are right nothing has changed since last then. This Dr. even said, the other two neuro's I have seen know more then him. He said I am the surgeon, I am not as qualified as them but still would do a spinal tap. I guess I am afraid of other brain lesion diseases or just a brain lesion instead of MS. I will say one thing, dont think I was not twitching when I came out of there and on the way home, and my tremors took off like a rocket inside.

Last night I finally had two rum and cokes and my husband gave me a massage and I fell asleep for the rest of the night..lol..I woke with puffy eyes from crying all evening and ran to the computer to here from you guys. You guys all make me feel so much better. I told my husband last night, it is so strange how you have never met or seen someone but you have such love for them :oops: ....I do and you dont know how much you guys mean to me..Thank you for helping me through this, I really mean that, thank you.

This syndrome is suchhhh a roller coaster, it has exhausted me. I told my husband I could not go through the worry again, I was fine and moving on and then bang. Now I dont know if I should go back to the neuro and get that spinal tap because I called them when I got home yesterday to make an appt. hmmmm..we will see but thanks guys and big hugzzzzzzzzz to you all..Jenn
 
Jenn... I'm still here with you. All the same crap to! I still tremor, TWITCH all the time and I swear I see atrophy in my r thigh... its also painful in the morning and my right foot hurts in the morning to. I hate this crap and I'm sure you do to! We have to just keep on trucking though. I keep going to the gym and working out, lifting heavy and working on my house. You have to do the same... dont let this shyt win!

You remember me? Been twitching since Dec05. Started in Right calf only... its still there and everywhere else.

Screw it... you have to ignore it
 
Hey!
I love when I can pipe in with stuff like this: I have hyperreflexia too! It's on both sides. HOWEVER, my right side is worse than my left. I've seen three, count 'em THREE, neurologists (one of whom is a specialist in ALS) all all say that some people are just born that way. Medications, distraction, etc., can all affect your reflexes.
I had an EMG that came back normal, and my neurologist told me that her own reflexes were more brisk than mine (and I feel really, super reflexic).
No one of these people were worried. I remember the first time I was told that my reflexes were brisk and stronger on the right, and the neuro just brushed it off with a "hmph." I came home and totally got hung up on it. The next neuro I saw explained to me why the first guy blew it off...because it's absolutely nothing to worry about. The third gal (totally unaffiliated with these other two fellows) confirmed this as well. It's just the way we are.
No worries at all, OK? :)

(And the rum and cokes really do help, I agree) ;)
 

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