My Story - Looking for encourging words

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My Story - Looking for encourging words

Postby Barb916 on August 23rd, 2004, 4:04 pm

hi, I'm a newbie here. I read posts here for many months and finally decided to join!

I'm 37yrs old and began having twitching about 5 months ago. It started in my face, left cheek and upper lip. I looked like Elvis when my lip was twitching. When this all started, I twitched non stop for 2 weeks in my face. Gradually, the twitching spread. First it was pretty much left sided. Then progressed everywhere. Also get a feeling of 'shaking' in my chest sometimes. (Acutally, the shaking feeling started earlier, maybe Jan along with a lot of twitching in my chest...this has subsided for the most part).

Saw my GP 2 weeks into this. Had blood work and MRI (brain and neck). All OK. Lyme Neg too. My doc said I could see a Neuro since I was still worried...because I did the internet search on twitching..you know!

Neuro appt was 2 months after initial symptoms. She did a through exam. All kinds of strength tests everywhere. She found some weakness in my right hand but said it "wasn't too bad". I type on the computer all day for work so I just wrote the weakness of to that. Neuro orded an EMG "just to be sure". EMG was done on left side, calf, arm shoulder and lower back left of spine. I didn't see the report by doc said it was "ok". Neuro said come back in 2 months. In the meantime, the facing twitching stopped. However, all I have to do is pucker my lips and my lower lip will start twitching for about 30 sec.

When back in 2 months (4 months into symptoms) and saw the Physican Asst (PA) not the nuero. THen, the Asst let a neuro Student do the exam and the asst wasn't even in the room ! I'm a little skeptical about that. The sutdent only tested my arms and hands. I failed the strength test when he put his finger on the muscle under my thumb and told me to touch my pinky with my thumb. I couldn't do it..on either hand. But then he proceeds to tell the PA my hand were OK. He kept feeling and comparing my the hand and saying hmmm while looking at the muscle under my thumb. What the heck does that mean?? :shock: When the PA came back in the room, she tested my feet. She said my r foot is weaker then my left (I am right handed) but didn't seem too concerned. Well, I'm freaked by that. First, my right hand is a little weak, now my r foot. I'm scared! I'm not falling or tripping or droping things...yet. I have noticed my grip in my r hand is gettin a little weaker. Again, is this from years of being a programmer and typing or is it a sign of something bac?

I left the neuro's office with a "all we can do is track it so come back in 5 or 6 months.,.but if I were you I wouldn't be too worried about it" Well, if I shouldn't be worried, why then are we "tracking it" and why do I have to go back?

Anyway, I accepted these answers for a while and now, about 3 week later, I have myself all worked up again. I had completely fixated on my hands. Thinking I'm seeing dents etc...Actually, I am seeing them! If I had atrophy going on, would I still be able to type as fast as I do? (I'm a pretty fast typer.) I swear the space between my thumb and index finger on my right hand is getting very soft, like the muscle is either shrinking, there is less bulk there. I get cramps in my hand in that muscle under you thumb too...again, from too much mouse clicking and typing or something else. I know you all don't have a clear cut answer for me. I just thought it might help my cope to hear from others who have gone through all this. Tell me how to stop this insatiable worring and examining myself. I hate it but can't seem to stop.

Thank you to all you took the time to read my ramblings. I do appreciate any comments.

Thanks!
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Postby dwl on August 23rd, 2004, 4:17 pm

This all sounds very similar to my early symptoms. It sounds to me like you have been very shabbily treated by your neuro - I would be looking for a second opinion if I were you.

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another question

Postby Barb916 on August 23rd, 2004, 4:38 pm

Thanks for the quick response! It's wonderful to know there are others out there willing to listen. May I ask you another question please? You said my symptoms sounded similiar to how you started out. How long ago was that are how are you doing now?


Also, my voice has a "crackling" sound to it for over 3 weeks now. Like I'm about to get a sore throat or cold; but I'm not sick. Can you relate?

Barb
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Postby garym on August 23rd, 2004, 7:32 pm

Barb,

Sorry that you have had such a negative experience with the neuro. I'm with David, I would find another dr., or atleast demand that the neuro sees you at your next visit (not a pa). The good news is that your dr. doesn't seem to very concerned about your sxs. If there are red flags, they usually become really concerned fast.

Good luck, and let us know how it turns out.

Gary
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Postby Stephanie on August 23rd, 2004, 9:09 pm

I would go to another neuro. This one is not the right one for you! You don't need to be practiced on. When I went to the er and a student Dr. checked my reflexes he said "Oh my god" and left the room. If your emg was normal then you can't have als. Everyone has a dominant side that is stronger. Even though I am right handed, I can only get the strength to carry my kids with my left arm. I will drop them with my right dominant arm. Doesn't always make sense. I have a stronger grip with my left hand than my right as well. I also found dents and what I thought was atrophy in whatever muscle I was focusing on. If you study other people's muscles with the same scrutiny you will find that your muscles are normal-look at a muscular anatomy book. You will see all kinds of dents and grooves and bulges that make up the muscles. Nobody is symetrical either. Your best bet is to avoid examining or comparing your muscles. Force yourself to stop. The more you focus on it, the more abnormal it will look to you (I know from experience). BTW, cramps are common with bfs. See a real neuro asap to put your mind at ease.
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Postby Ava on August 23rd, 2004, 9:49 pm

I agree with the others that you should see another neuro. With the negative emg, it is extremely likely this is a case of bfs, but it would be great to hear that direct from an experienced neuro. From what I can gather, your neuro and his team are not experienced enough to give you a complete diagnosis of BFS. This is not because you don't have it, but because possibly they don't know exactly how to diagnose it. If you live in the SF Bay Area, I have a good doctor who is experienced and takes all the info. like the neg. emg, etc. and tells you that it is bfs.

Also, you say that they are finding weakness on neuro exam - I don't know how to interpret that in terms of bfs, but could it be the one examining you doesn't know what normal strength is? What I'm getting at is maybe they are tracking you for what lack of strength is there or that they think is there to see if it progresses since they don't know why you have it. It very well could be from over use or injury to the hands from typing, etc. and maybe another neuro could pin point why you have the weakness if it is infact clinical weakness at all.

If I were in your shoes I'd want more answers and I'd want them now to relieve any fear. Find the best neuro you can and have them review your file and give you the once over.

Good luck,

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Postby dwl on August 23rd, 2004, 11:45 pm

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Postby speg on August 24th, 2004, 10:58 am

When my neuro asked me to spread out my fingers, both my pinkies were unable to stand up to the resistance. I freaked, but the neuro said, "Lot's of people can't do that one." He tested everywhere and said I had normal strength and was fine.

I also had my strength tested by a PT who said my shoulders were a little weak. I freaked on that one too, but she added, "Not in a neurological sense." I think we can have weakness due to other conditions (like being out of shape) and they should be able to tell the difference.

I also was hoarse Sunday and Monday of this week, but I do think it is just from staying up too late and drinking at a wedding on Saturday. Our minds get the best of us. (Besides, ALS is more nasal, I believe and strange sounding.)

Don't fixate too much on your hands. I did this and actually caused a persistent twitch between my pointer finger and thumb that lasted three days. The scariest twitch yet.

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Postby Barb916 on August 24th, 2004, 10:04 pm

David - thanks for posting "your story" for me. You are right, we do have very similiar experiences...including the tounge twitch! I did mention this to the nuero on my 1st visit and after looking at my tongue, she said she was not concerned about it because I still have full use of my tongue. Not trouble eating, speaking, etc.

Gary - Good advice...I will demand I see the actual neurologist on my next visit(in about 4 months). When I saw her the 1st time, I felt very comfortable and re-assured with her(at least for a while). She did a throughout exam. I told her about every twitch, and other shaking type feelings I had. She listened very patiently (not like some docs who ask you a question and then cut you off right in the middle of your answer). Maybe I should take seeing the PA as a good sign...meaning that the neuro was not too concerned about my symptoms and therefore she didn't feel I needed another complete exam. Anyway, you can be sure I will see the NEURO on my next visit!

Stephanie - Your right about other peoples hands. At work today, I was in a meeting and I "non-shalauntly" (sp?) was noticing everyone's hands! Male and female alike, their hands lots of dents and bumps too! I'm glad I looked, I just hope no one saw me :oops: I have 3 little girls and I too carry the youngest in my left arm! I think we do that so we have our right (dominant) hand free to do other things. Now it makes sense why the left would be stronger...from always lifting and carrying about 30 lbs every day!

Speg - I agree with you on the voice thing. It probably is from not enough sleep. I haven't been sleeping well for a long time now, even before the twitching started. I have major stress from work too over the past 6 months. Maybe it's just all catching up with me now. I didn't know that about the nasal sound..thanks. I'm not nasal at all..yipee!

Ava - At my 1st neuro visit (with the actual Nuerologist not the PA) I told her I was concerned about you know what. She said "I just diagnosed a 42 yr old man with that...and I don't think you have it". I felt terrible for the man she was referring to, so young with such a horrible disease,but oddly re-assured that ..ok, she's seen someone recently with it and is now looking at me and saying she doesn't think I have it. Am I terrible for thinking that way? She did order an EMG and in her words "just to document it but I don't expect to find anything". And thankfully, it was clean. So why to I continue to obsess over this stuff..I don't know. I just do. Maybe I should get a copy of the report and read it with my own eyes. Do you think that will do it? !!! :shock:

To all - thank you so much for your time and kind words. I'm so glad I decided to post !! :D
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