Referral

[allie/chase dad]

Doctors really are the worst patients.

I finally went back to my very good primary care doc. Hadn't been since this started in late February. After seeing multiple very questionable local general neurologists he's sending me to Cleveland's neuromuscular division. Of note i arranged the local neuro hopping on my own. Stupid. My pcp didn't even let me finish my story before he said you need to go to Cleveland. No question I should have done this over a month ago. No idea when I'll get in but I feel a little better knowing im at least on the road to figuring this out. If nothing else I'm getting the opinion of someone I trust. It also felt good today to see someone who truly cared about me. I didn't realize how rare that was to experience as a patient. Or as important.


Thanks and prayers to all of you. The sun is shining here today. I'm going to enjoy it!

 

[Alyoop]

Best wishes for your appt. drs really are the worse patients. My husband either ignores important symptoms, or thinks he's got the rarest of diseases. Hence him telling ME I had ALS despite what my Dr said . He was wrong!

And there is nothing quite like having a dr who listens and cares

 

[Toto's Dorothy]

I find the Nur se Prac ti tion ers stay with a pa tient a lot longer than the doc tor. I guess that's why we are charged the same amount, no matter who we see.

Good luck with your a ppoint ment.

And yes, doc tors do make the worst pa tie nts and then add being a male, just magnifies it.

 

[oscar1]

really wishing and hoping you get an answer soon
best wishes margaret

 

[Toto's Dorothy]

This may sound like a dumb question, but if you referred yourself to a local neu rol ogist, why didn't you just refer yourself to the Cleveland fa cil ity? Just curious.

 

[rose]

Good luck, I hope you get answers and that they are good answers.

Cleveland Clinic is an excellent choice (as you already know) I understand what you mean when you say it makes you feel good to know someone really cares about you. It is important, and is always remembered.

 

[allie/chase dad]

Toto,

Your right about the male thing. I wasn't trying to be "the man that knows it all", but I was trying to be stoic, reasonable, in control etc. Certainly didn't help myself out by taking matters into my own hands.

As far as changing neuros- I had concerns about how my EMG was done. The inital neurologist was extremely rushed and disinterested. I told a surgeon at work who insisted I see someone he knew. He set up the appointment etc. He was concerned about me and wanted to help. In retrospect I should have simply followed up with my PCP and he would have gotten me pointed in the right direction. Live and learn. My real regret is that I may have unnecesarily subjected my wife to an extra month of stressful waiting. Regardless I'm headed in the right direction now.

 

[Grateful]

Well, as they always say, a lawyer who acts for himself has a fool for a client, and a doctor who diagnoses himself has a fool for a patient.

I very much hope that you can get your anxiety under control since you are still using very me-centred language. Let's face it, on the facts, there's no doubt that you put your wife through a hell of a month completely unneccesarily. Saying that you "may" have done so is a complete cop out...

 

[Alyoop]

Ha Ha , I could write a novel about my 4 year journey with my neurologist husband dragging me about. Not litterally of course, but felt like it at times. He never agreed with anyone I saw!
Best wishes

 

[Toto's Dorothy]

Aly, unfortunately that's 4 years you can never get back.

A and C Dad, read Aly's post over. That's 4 years she went to Hades and back. 4 years gone and can't be replaced. You need to do this now and not put you, your wife or your kids through years of the unknown. Please don't question the doc tors abilities to evaluate and treat. You being a doc tor understand what i'm getting at. And remember to let us know how things are going.

Good luck to you,

 

[Toto's Dorothy]

Sent to the naughty room. I'm truly sorry, David.

 

[allie/chase dad]

Wow grateful. Really? I chOse the word may on purpose. The reason I chose it was because if this is something bad an extra month of purgatory may be a blessing. My wife is scared as hell about our appointment in cleveland. Right now she can still dream about me being around for all the milestones. As far as anxiety goes where did you get that from my post? Not sure how you have handled your own ordeals but it frOm your holier than thou post I'm guessing pretty damn well. Good for you.

 

[allie/chase dad]

I thought this would be a good place to share with others and lighten the load of venting etc on my wife. I was wrong. I may be back if I get bad news but for now I'm out. My prayers go out to all of the pals and cals out there.

 

[rose]

Steve,

I apologize that you have been made to feel this way. You are correct, this should be a place where you can come and vent. This section of the forum exists for people to talk about themselves, and the concerns that have brought them here in the first place.

The uncertainty is scary for family members. And, for many reasons, family members are not always the best sounding board.


I am fed up with the condescending attitudes that are being expressed with increasing abandon here. To what good purpose is it to run virtually all newcomers off? Is there a secret password or handshake that has been implemented to allow those who post here entrance into the "In Crowd"? (which I am not aware of) Take a step back. If you don't have anything helpful or friendly to say, don't say anything. Really, just DON'T—SAY— ANYTHING. You have no responsibility to come and answer posts. Enough is enough.

Edited to add: There is nothing horribly outrageous here as far as snotty responses to Steve, really only one within this particular thread that prompted my above response. However, it is an example of a growing trend in attitude. If any of you actually knew me in person, you would know that one facet of my personality is patience. For me to speak quickly, prompted by exasperation is a very rare occasion. Know that I don't want to make anyone feel singled out, but also know that this kind of attitude is a serious detriment to the forum, and hurtful to its individual members.

 

[vlcare]

Thank you for your comments, Rose. I had expressed similar concerns privately to Al a few months ago.

VL