Follow-up Neuro Appt: Reviewing Results

Highlights Only
P

papillon58

Well-known member
I just returned from a neuro appt. This was a follow up that I scheduled with the doc to review all of my bloodwork etc from my visit at the beginning of May. I have seen another neuro in between-- one head of a neuromuscular division in my city ( a big one )( not ny,chicago or la but a big one )--....The first time I saw this neuro he said BFS after performing and EMG which was fine and sent me on my way but said we should review the bloodwork but that might be done from my gp. Then I made an appt with the second doc.Anyway, the second doc said BFS and did not want a follow up. He did not perform an EMG only clinical ( well the intern did the clinical mostly-- the MD did some but he was very firm in his assesment of bf but he did say that "we all twitch-- i said i never twitched like this and he kind of implied that people did ?! ) MD said "classic case of bf and anxiety"-- though he did not say BFS-- When I said BFSYNDROME he said i did not have a syndrome-- did he misread me???????His intern said if i wanted to come back in 3 months for a follow up emg I could but he suggested that was more for me.Today when I went in, I mentioned that I had developed some new symptoms ( the tongue twitching ) since my first visit. Then he was asking me about timing, and how long i had been twitching.... he said today that "oh, i thought you had been twitching longer " ( was that to say that the emg he did didnt count?????)--- he also ordered an EEG because some of my twitches actually cause my hands of feet to move. He said that EEG would determine if it was in the brain. He also said that I should have a follow up EMG in six months. I could not get him to say it was not *** but he did say ( when pushed ) that he did think I have anxiety.I started to twitch in the fall of 07 or early winter of 08 but not all over. It was in my calf only. It happened mostly when sitting down-- not 24/7 -- seemed to come and go.Then sometime in March or April I noticed that I also had a new twitch in my neck. This one also would come and go. Then i went to gp and she said BFS. Right after that, within a couple days, my twitching spread all over including my tongue. Not big ones, just little ones... but they happen. I would say that now, i twitch about 20 times a day on average......some days it seems like less, some days maybe a little more..........What do you guys think??? I am scared and sad. Sorry to keep calling on you.Any vets to help??????????
 
Hi just want to get this straight. Today you saw the 2nd, doc again...not the 1st. one who did the clean EMG right? So, this doc has never done an EMG, right? I am thinking if he was even slightly concerned about **S he would have had you do another EMG TODAY! Not in 6 months. It is my guess he is being thorough with his follow-up on you. Remember your first EMG was clean and they said BFS. A clean EMG after twitching has started doesn't turn into a dirty one. Even the **S websites seem to agree with that. I wish I could be of more help in reassuring you, but I am certain others will come along and post too.Hang in there, we are all here with you :)Linda
 
thanks for your posti saw the first doc-- who did the emg-- and the second doc didnt do an emg--but it was the first who i saw today-- i am pretty confused about the clean emg thing-- why would docs say to do it again in six months if that was the case???????
 
Hi again, I have not seen a neuro myself, so I don't know the answer to your questions. Maybe someone else will come along that has some insight. I still don't see why he didn't just do another EMG today? That makes me think he is just covering his own butt and being cautious by following up in 6 months. Try not to worry.Linda
 
please, this gets me mad! YOu twitch 20 times a day??? Whole the world twitches 20 times a day! I twitch 24/7 times a day! DAY AND NIGHT - THOUSANDS!!! So this means that I'm doomed!!!!
 
i dont think frequency matters-- and besides, i prob twitch more and dont feel them-- i am doing my weird tongue thing too-- where my whole throat twitches...lets try to investigate frequency-- but in any case, i never twitched like this before--
 
Hey, bk--I've seen all your posts today--sorry this has you in its grip. If you were twitching when you got an EMG, and IF the twitching was ALS, the EMG would show signs of it because the twitching is a symptom of the muscle dying, in the case of ALS. So the disease is present--the EMG can't be TOO early once you start twitching. Read the hundreds of posts here on this topic, including Sean's in response to another of your posts. Some neuros seem to dismiss ALS relatively quickly; others are a little more "shy," shall we say. Don't know why--maybe it's CYA, but mine told me on the first visit as he finished the clinical exam. Then, he did an EMG--I had been twitching two months at that pointed, counting from the first little rotten ping in my right foot--he said that if I had ALS, the EMG would be "going crazy." I've been back two more times--second one hwas already pretty tired of my anxiety--and the third visit was because of back problems that I have, not the twitching. It's been almost 9 months now and everything is OK. Lots of ups and downs, but a clean EMG is a clean EMG. A follow-up may be because he suspects another BENIGN cause or he wants to buy that new Ferrari and you're test will make a month's payment!Sounds like you've been cleared of ALS--accept it when a doc says BFS and anxiety.Hang in there,Mark
 
Hi BKI think if your doctor was concerned in any way he would not wait six months to do another EMG.Bart,Do you remember the post about stress causing your body to lose magnesium, thereby causing twitching? That means the more you stress out about this, the more you'll twitch. You hAVE NO WEAkness, no atrophy. You've been seen by excellent doctors who are not concerned about ***. I think you have to trust your doctors and try to calm down. After eight months, there would be signs.Sandra
 
You are all so kind and informative. Thank you. The thing that gets me now is that he said "oh i thought you had been twitching since 2007"-- when i told him i really had only had all over twitches for 2 months now, it seemed to change his tone--almost backpedaling-- that's what has me a bit freaked ( well freaked-- guess you can't be a little freaked ) -- The other doc I saw, seemed to be more assured in his dx, though he wasnt the one who did the emg-- the guy who is backpedaling is ....so round and round i go........
 
So , i have twitches that occur all over-- but i also have one in my calve that comes and goes... it is a big one usually-- I can see it through my pants right now-- anyone else?????????
 
Hi bkI think big strong twitches are a positive sign. Didn't you start twitching in the fall and it has just recently spread? I think you calculate the time from the when you first started twitching. Mine started in my right thigh for a whole day, then both legs. It did not spread until I googled twitching. At that point they became widespread. If you were already twitching when you had your EMG, anything bad would have shown up at that time. I have a hard time with this too. I'm 56, which is about the average age of diagnosis of ***. I knew someone who died of *** and it has always scared me although I felt that it would not happen to me. After seeing the neurologist, I told myself to just believe what he said and get on with my life. Sandra
 
do you think you calculate it from the first twitch, even though it was one locale, or the all over twitches?? they happened months apart-- what has everyone else done?
 
hi Quickrider --i am 47 so right in that age bracket myself--my friends mom had ***-- but i didnt really know her-- and i just heard about a gal who went to my college who had it-and then a woman i know just told me her mom had it too-- in addition, my best friends ex has it ! that is a lot of people to "know"! though fortunately, none were close to me--seems like a lot when there are only 5000 new cases in the us each year--i had a tough night's rest even though i took some clonezopam (sp)-- i had a big leg jerk and i am doing something downright funky with my tongue-- i have developed scallop marks and i dont like it one bit and darn it, i forgot to show it to the neuroi am leaving the country for a couple weeks at the end of the week--i hope it all goes okayclearly, i am having a tough time -- i am soo glad i found the site--and so thankful for replies--
 

Users who are viewing this thread

Total: 1 (members: 0, guests: 1)
Back
Top