Timeframe ?

[fox2run]

[fox2run]

Just to put things right...

[SuziQ]

This thread is absurd. There was actually a poster who FALSELY calculated that the risk for getting **S in a lifetime is the same as for MS. WTF? Um, that would be a big FAT LIE. Of course, he was drunk when he wrote it.

Any of us who work in hospitals can attest to the fact that, statistically, FAR more people get dx'ed with MS than **S. In 20+ years in the clinical realm, (and I've been in both the acute AND chronic settings,) I've had a handful of **S patients, but thousands of MS patients.

I will never understand the tendency for some people to disbelieve their own physicians, yet take the word of strangers on the internet as gospel. I even saw a physician RIGHT HERE on this board give VERY sound clinical advice on a thread recently, but the recipient completely ignored it and asked another poster, (a LAY person who merely reads articles and journals,) his/her opinion. Again, I ask WTF?

If the REAL live, in-the-flesh experts and physicians who SEE and DX this condition every day; if those who have examined you, themselves aren't worthy of your trust, why trust some chump on a message board? Reading medical journals, doing online research, even going to the doctor and asking him/her questions does NOT make you an expert on **S. Sorry, kids but that's reality. If you want to be a doctor, go to bloody medical school. Don't pretend to "play one" on the internet. It's infuriating! This board is not a forum for wanna-be physicians to show-off their paltry medical knowledge and their cheap online research skills. Nor should ANYONE trust ANYTHING these posers have to say. If you want them to be your neurologist, why don't you ask them to write you a prescription, or perform your next EMG? Wouldn't that be fun?

Sorry, I just really needed to get that off my chest.

As you were.

Blessings,
Sue

[fox2run]

Nice post. Thanks. We are so easely get carried away here, I guess. You are absolutely right. To thrust the dx given by experts is Alfa and Omega!

[highpriority4]

I agree with SuzieQ...this is absurd...and Basso - seriously!! You always know how to crack me up! Every day that passes since my neuro exam (okay so its only been two days LOLOL)...anyways, every day that passes...my obsession with you know what sinks further & further away! As Basso told me awhile ago (and I now believe him however I didnt at the time he told me but dont tell him!!) the fact is...that NO ONE that makes their way to this forum & stays...has ALS...typically they have BFS, some may even just have an annoying twitch that will go away in a week or so...but none are going to die from the twitch that brought them here. My neuro actually said to me these exact words: "This twitch is not going to kill you a year from now and not even 30 years from now". I choose to believe him...but even before I went to see him...I knew I didnt have ALS & it was just my mind scaring me...I knew this because of people like Basso & SuzieQ & Twin2 & Ed & all the other oldtimers (not old as in years ) that so unselfishly took me under their wings & listened to me whine & be scared...and then told me in plain terms...you're okay...now get over the scare & move on. That is exactly what I'm doing...and you should try to do it as well cause if you have BFS...the worrying & stressing doesnt make it any better.

[jro]

SuziQ,

I understand your frustration over people's lack of trust in doctors and laymen not realizing the limitations of their understanding of medical journals. For me, the most difficult thing has been seeing 5 neuros (two neuromuscular specialists) and having different statements made on the same issues by all of them and sometimes inconsistent statements made by the same neuro on different visits. I was a lawyer for 6 years and a bad side effect is the ability to detect inconsistencies. I don't think the inconsistencies are always signs of incompetence and they maybe misunderstandings or misstatements etc but they leave me feeling that there are more uncertainties than all neuros are willing to let on. However, some uncertainty doesn't mean there isn't some knowledge that can be leaned on for reassurance. I try to trust my neuros but I do question them even when the react poorly to it; it is just my nature. I do not go around feeling certain doom over my symptoms and value more than anything the individual experiences of those on this board and the doctors that see lots of patients and how they do or do not present or progress. I just don't completely bank on black and white statements very easily especially when they are not uniformly accepted.

jro

[SuziQ]

[jro]

Sue,

You are absolutely right. The legal system has made it impossible for doctors to be totally honest and I completely understand and don't fault them for it. When they know you used to be an attorney it also makes things even worse. I try to take away what you suggest which is that if they are being 99% reassuring this is great news and they would not do that if they really thought there was cause for alarm. Also, there are just unknowns and they get irritated when you press them for answers that aren't there. My neuro, Dr. Engel, is very forthright about admitting he doesn't know something and that his opinion is based on his experience and he knows other disagree. He doesn't want to get into why he disagrees because he disagrees with some of his colleagues who have also seen me. He also said something interesting about my brisk reflexes. He said he thinks they are brisk because my nerves are hyperexcited and this just makes sense to him logically even though he has never seen it in a textbook. He disagrees with a lot of conventional thinking. Another example is my sensory nerve conduction velocities. He says they are severely abnormal. Another neuro looked at the results and said the numbers are not severe just mild to moderate and that is textbook fact. I asked Engel why he said severely abnormal when others don't agree and he just said that's my opinion. In other conversations, I get the general sense that he thinks people underestimate problems with nerves by blaming it on age etc when it is really a neuropathy. Maybe this is why he is willing to call things a little worse whereas others think it is normal variation or aging. He is a researcher focused on finding solutions, which I greatly respect. I am trying to keep my over analytical mind in check as it doesn't always serve my best interests.

jro

[basso]

[jro]

Basso,

I respect your response a great deal. Especially the part about trying to make sense out of nonsense. My doctor has urged me to not try and figure it out. I know it is an anxiety reflex to try to solve the problem. And when it is really not in my power to solve, the trying to do so only makes things worse. I also agree that you have to make living life the priority so bfs or whatever I have is not the focus. I do live my life. I love my job teaching and have done more of it since the onset of this illness than ever before. I tutor after school and teach on Saturdays in addition to my regular duties. I find a lot of fulfillment in improving my students' lives and self confidence. Because I love life so much, I fear not being able to enjoy it and this "condition" physically made life less enjoyable even when everything objectively was perfect (marriage, finances, career, etc). I feel guilty about having to take Klonopin to keep going. I feel that I should be able to will the symptoms into the background but I can't. I feel like people think this is all anxiety because Klonopin is an anxiety drug and it helps me. I pushed for so many tests (muscle biopsy, 40 plus blood tests, etc) because I needed something objective to make others believe me that something was going wrong. Now I am coming to the point of understanding that something is "wrong" but "wrong" is relative. We all have something "wrong." The issue is how much really needs to be done about it and how much time needs to be spent figuring it out. I'm getting closer to striking the correct balance but it is a process.

jro

[basso]

You teach Saturday's, too? (That is a little crazy) JK

Well, your students are fortunate...as are their parents. I can tell you are a great teacher, jro, it reflects in how you write, and the passion that you show for learning. I wish my own children had been exposed to a few more teachers such as yourself; you are a rare breed.

Basso