Neuro Visit Results - Left Calf Atrophy

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Anxietyaway

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Hi all,I just got back from the neuro...Thanks Robynn for being there for me before and after...here is what he said:1) I have obvious left calf atrophy...he didnt even have to measure...but he doesnt think it is from ***, rather from a back issue, even though I also have cramping/twitching in that foot and leg for months...and no back pain.he said that he has differences in his calves too, due to back problem, and this can be even if a subtle problem.....but that it would worry him if he had atrophy and fasciulations, too, as he sees so much *** in his work...so I am normal for being concerned...but in absence of clinical weakness, I should not be...and this should not be ***.2) he said that weakness always precedes atrophy in ***...and I am not exhibiting any...but that it is normal for my left calf to feel less strong because it has less muscle. he made me walk on toes and heels and said if pathological atrophy I coudlnt do that...he also did the push tests for feet and legs, and they were normal...3) he has only seen one person in his career, since 1983(he writes books on ***, and is the head of the university medical neurology/*** center in my county), convert from BFS to ***, and it was an old man, after a few years. he does think we all need to be followed, and he is following me and 4-5 others right now with the same thing as me...and the others he has been following for a long time with no negative outcome...it would be extremely rare for it to convert...but as in the general population, there are no 1000 percent guarantees. (he doesn't have a crystal ball...and can't say for sure he will not develop it either in a year or two or three ...or ten...)4) some people with *** have fasciulations, but there are other signs too... like CLINICAL weakness, as we know...5) he wants me to have another EMG, which is tomorrow...but thinks it won't show anything except maybe sciatica. he will then order another back MRI to see if there are any issues.I hope I didnt freak anyone out with this post, but I wanted to be honest about what I learned...Despite his reassurance, I am still concerned, and very worried...I hope to have good news tomorrow...All good wishes appreciated....Thanks, Victoria
 
Your post is in some ways reassuring and in some ways frightening, to me. It seems like all neuros have that effect on me. :( I am pleased to hear that your neuro thinks that you are OK, sorry to hear that you have to have an EMG. Please let us know the good news tomorrow.
 
Hey Victoria, no problem being there for you today whatsoever, I'll be there for you tomorrow as well :D) It will come out clean, I'm sure of it. :D) Seeing everything he said on your post sounds a little scarier to me then when we talked but I appreciate your honesty :D) Take CareRobynn :D)
 
Victoria I am sure that your emg will be fine.I am also glad that you found a doctor who takes you seriously and is open and honest with you.However BFS cannot convert into mnd...It doesn't work that way...I challenge anyone to deny that.Your twitches are either benign or they are not. simples.Your doc is following you up...thats good...but many of us have been discharged and are not followed up. I just want to say that because one doc says that we need to be followed up does not make it true...there are differing professional opinions and im sure and if your doctor has seen only 1 bfs "progression" in 20 years then he/she is obviously erring on the side of caution.Best of luck with the emg I know it will be fine.
 
Hi,I am sorry to have upset anyone...I think i too am reassured but worried..I think it is the nature of having a syndrome that shares symptoms with a MND. It is of concern but should not debilitate us with worry...I may have misused the word convert...he said developed...after I had referred him to that article that was posted and removed a week or so ago...so i think you are right ionyZarrion that fasics are benign or not...and without clinical weakness they are always benign...it could be that the old man had BFS, and developed a separate process of MND later on...Im sure that in any population there can be connections....a certain small number of people with say parkinsons or breast cancer may also go on to develop it too...so I dont think BFS is causative and neither did doctor...just as rare in our population, fasiculations and/or cramps without weakness, as the general population he said... I totally agree ionyZarrion that the doctor is erring on the side of caution(and malpractice law)...suggesting that I follow up...he was clear that in his experience it is very rare...Thanks so much everyone...I will let you know the minute I can get to the computer after the EMG...and Robynn, I will call you...Victoria
 
Its all good victoria.you havent upset anyone...dont think that...its important to debate and discuss the opinions of our doctors!!Just because something is unsavory sure doesn't mean it shouldnt be posted. ps.You will have a clean emg and will come on here and celebrate
 
Thanks or posting Victoria. I think what most of us here have to remember is that anybody can get ALS. Just because we twitch doesn't make us more prone to it. I have never heard of such a thing. People who have never twitched get ALS. I think he is just being a cautious doctor and a good one that actually cares. My neurologist basically told me to stop worrying and get on with my life. He ran no tests (my GP was actually the one who ordered all my tests) so be thankful you have a doctor who cares. I am sure you are fine like he says.
 
No worries Victoria, I and everyone knows that your post was not to upset anyone, and I dont think anyone is, so dont worry about it. You posted a very honest post and for the most part, none of it was saying anything we all havnt already heard or been told, so like I said, no worries.When I said it looked a little scarier than it sounded when we were on the phone just meant that it hit home with me because I never got the words BFS out of my neuro, I've never dealt with the big question mark hanging over my head very well, but you didnt upset me whatsoever. :D) Take Care and I'll talk with you tomorrow, its going to go just fine, no worries :D) Robynn :D)
 
Also..different doctors have different opinions. When I decided to get a second opionion from a different neurologist I specifically asked him if this progresses into anything bad. He said "no". So, I think all doctors have a different take on this stuff.
 
My EMG was cancelled due to a plumbing problem in the office...Geez...I thought the agony of waiting and worry would be over soon...I rescheduled for next Tuesday with my doc instead of taking saturday appt with someone else...Id rather have my doc do it...he is head of the department....will keep you posted..thanks for all the on going support...Victoria
 
I fail to see anything in this post that is any different than the things that we all knew about this stuff in the first place. Same thing over and over again people... Lack of clinical weakness. Lack of clinical weakness. Lack of clinical weakness. Say it over and over again. Could any of us get a nasty later in life? Heck yeah. What is the chances of that? No greater than before we started this trip. Victoria, I fail to see ANYTHING in your report that is a negative as far as a MND goes. I had very obvious atrophy in my right arm 6 years ago, this was before I knew anything about the nasties. Had I known then what I know now I would have been a basket case. Anyway I ended up having 2 degenerated discs and spinal stenosis. Ended up having neck surgery and have been cured of that. My point is, my back didn't hurt either, but my arms and hands did. My nuero thinks that may be why my twitching has now manifested itself in that arm and hand. Who knows... You are and will be fine.
 
Victoriathe cancellation of the EMG is Gods way of testing you-You will be just fine- the neuroligist (one that actually writes books on ALS) has said-He does not think (and has to say that for insurance issues) it is ALS- BELIEVE HIM- I dealt with my father for along time he definitely had clinical weakness before he ever even noticed fasiculations- a matter of fact he never new he had fasicutlations-another words-HE NEVER FELT any twitches or Fasiculations all he new was clinical weakness-Believe your DR he said it himself- he sees alot of other patients that do have ALS- Remember you are still strong in your leg-maybe not as strong as the other but that is normal for less muscle- remember you do not have clinical weakness-the only TRUE clinical weakness is a SIGNIFICANT variation in strength from one side to the other, OR a complete inability to use the limb; ie, walk, grasp, etc.Hang in there Victoria believe the good DR- all is well- David
 
David, it is much easier facing God's test with you all in my corner...I felt so incredibly isolated for months and months before I joined here...I am not doubting the doctor at this point, I will just be happy to have EMG confirmation! I am sorry about your Dad...I lost my mom to lung cancer in '05, then my 42 year old sister to the same disease 20 months later. If you dont mind me asking, did your dad develop atrophy before or after the weakness? Traveler, a good mantra: Lack of clinical weakness. Lack of clinical weakness. Lack of clinical weakness. and clinical weakness is as David wrote: a SIGNIFICANT variation in strength from one side to the other, OR a complete inability to use the limb; ie, walk, grasp, etc.and thanks for sharing your atrophy story....I am sure I have disc issues, the MRI in April said so...Im just going to focus on taking my girls on a college visit tomorrow...10 hours in the car with two teens-Yikes!-something to really twitch over!Best to all....and much gratitude...Victoria
 
Hey Victoriathe long trip with the teenagers is gonna be your worst thing you have to deal with for this month- and NO he showed no atrophy that i could see at the beginning- the weakness was DEFINITELY FIRST "Clinical Weakness"No WorriesDavid
 

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