Timeframe ?

[fox2run]

Rapportér dette indlægSvar med citat Re: **BIG HUGE SIGH** YAYAYAYAYAYAYAY!!!!
af highpriority4 skrevet tirs maj 12th, 2009 12:07 am

Oh...and he also said that the reason it takes 3 months to get into the Mayo clinic...is because if after 3 months you are still walking/talking/living life...they dont even really need tests to be sure you dont have ALS. He said that twitching isnt a 1st symptom of ALS...by the time someone with ALS has twitching (if they even notice it), 3 months from that time they would most likely be unable to live life normally...if they were even still alive. So for those of us who have been twitching more than 3 months...that should help some with reassurance! This Doctor had numerous certificates from the Mayo Clinic (I felt like I had just met a celebrity LOLOL)...somehow I got lucky & my Family Doctor referred me to a really good one! So...when your neurologists say things to you like I have posted...you can rest assured that even an ALS specialist agrees!I swear I'm not crazy....well....maybe a little. highpriority4
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Just to put things in right...

[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]

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

Hi jro,
And AS an attorney, I'm sure you know how difficult and rare it can be to back a physician into a corner and get him/her to admit, with 100% certainty (no matter HOW confident he/she is in the dx,) that a patient is absolutely, perfectly healthy. There are VERY few who would put themselves on the line like that, at the risk of their medical license, their practices, their houses, their futures, and their families. It is just safer to be vague and noncommittal when dealing with patients/potential lawsuits, etc. THIS DOESN'T MEAN HE/SHE IS NOT CERTAIN, IT MERELY MEANS HE/SHE ISN'T TELLING THE PATIENT.

But, when that patient is no longer in their face, TRUST me on this, they tell their colleagues a completely different story. I see it EVERY day. It isn't that they are lying, it is just what we call "CYA." I have had doctors tell me ALL the time that so-and-so is just a neurotic loonie-tune that has nothing wrong with him/her, yet tell the patient that they are working them up for such-and-such condition. I'M not going to turn around and SUE them if they are wrong. The neurotic loonie tune, otoh, will.

On the flip side, if there is even a HINT of something suspicious or sinister, a physician will tend to disclose that right away, because we have become a "worst case scenario" kind of culture. Then, when the tests are done and the work-up is negative, it is far simpler to deal with a patient/family's joy and relief than their shock and anger at not having been prepared in advance.

Unfortunately, what this tends to yield is lots of anxiety, hyper vigilance, mistrust, and inconsistency, just as you have described.

In addition, there are symptoms and conditions that no clinician can explain, but their experience over the long haul is that the outcome is benign. If you suffer with such a condition, it is frustrating because you will want answers that your doctors just don't have. Because of the many variables and possibilities, they can tell you that whatever it is will run its course, that it is most likely benign because their diagnostics aren't showing anything concerning, but they can't EXPLAIN how they arrived at these conclusions other than from their instincts, and personal experience.


Blessings,
Sue

[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]

I am trying to keep my over analytical mind in check as it doesn't always serve my best interests.

What does that mean, exactly? What is a mind that is over-analytical? Isn't that just another way of saying that one doesn't accept an analysis? Or, to put it another way, doesn't it imply cynicism? To me, if a person says they have an over-analytical mind, it means that they look for something that fits their own idea of reality.

People that believe themselves to be over-analytical are rather proud of such a fact; which I find curious, being that their "over-analysis" doesn't usually take in the context of being a life-force on a planet.

What is it that we are analyzing, anyway? Data? What about repressed feelings, sexuality, spirituality, or love? The medical profession, with their tests, is fraught with dissension, negative-positives, positive-negatives, parameters of this and that. That the professionals can't even agree on most of it should tell you something. To over-analyze a test that is contentious in nature is to try to make sense out of nonsense. We become experts at understanding fiddle sticks.

You/we feel there is something odd with our bodies. We get the usual batteries of test and told we are well. We are walking fine, we are strong enough, and yet we can't believe that we don't have some "condition." Not that it would do any good as there is no treatment for bfs, anyway. There are drugs which ameliorate anxiety and some say cramping, but really, there is nothing in the way of a medical intervention which is worthy, or even needed. The best course of action is to remain active; something we all should do, anyway. Ask anyone here who has fallen in love since they got their bfs, and see if that did not make them forget about their malady.

Getting over bfs means getting over yourself. Yes, you may well still twitch, experience cramping, burning, tremoring, and so on, but the priority you will give it in your life will be negligible. How much obsessing, and it is an obsession, are you willing to have in your life about bfs?

Almost everyone, who is posting here today, has a counter-part who have posted on the exact same issues. The names change, the posts...not so much. The fact is, even the most intrepid researchers, the most dire-hard worriers, and the philosophers move on. Bfs can only engage one for so long before a real life becomes too much of a temptation.

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