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nascarmike

Senior member
Joined
Nov 7, 2013
Messages
227
Diagnosis
06/2013
Country
US
State
rhode island
I need to ***** for a moment. I have been having episodic neuro issues lately, meaning since fall of 2013 starting around Columbus day. Long story short my wife went with me so she could tell the DR. about what she sees on a daily basis. Left felling more confused and frustrated and still more tests and NO ANSWERS! But then again it's just " all in my head".
 
Frustration just sucks. Sorry and I hope you get some answers soon.
 
I need to ***** for a moment. I have been having episodic neuro issues lately, meaning since fall of 2013 starting around Columbus day. Long story short my wife went with me so she could tell the DR. about what she sees on a daily basis. Left felling more confused and frustrated and still more tests and NO ANSWERS! But then again it's just " all in my head".

Hey Mike... I don't know if that "all in my head" statement was sarcasm (which would be fine because we surely all understand that feeling :) ) or if your doctor literally used those words.

If s/he did... well I'm not sure I'd keep seeing the same doc if you're able to switch. We pay them to continue to do their testing and come up with new ideas and NOT pass this kind of ludicrous and false judgment when someone is having a medical issue! :evil:

I went through something with my own doc just yesterday that left me feeling uneasy. It makes me so mad. I said something about my last visit that I understood him as saying back then. Instead of just telling me what I misunderstood (and this happened TWICE on different issues) he started with "well, that's not true...." Maybe I'm extra touchy, but it really rubbed me the wrong way because it's what I understood him to say last time... I wasn't sitting there lying although that's how he made me feel! Sheesh. :confused:
 
Just read both posts. I am new here but I just wanted to share what you are feeling. I know the frustrations, I know how the medical profession treats us. I had the diagnosis by a neuro at Penn Hosp. (I will add it's a pretty good hospital too.) She wrote FMS on my medical records and sent it to my primary. Now, this Neuro is rated a top doc in Pennsylvania. Pretty sharp, no nonsense, no bull doctor. She is fast and thorough. I went to see my primary afterwards and he said to me, "You don't have that I disagree." That was the end of that. But because I was brainwashed to believe this disease does not exist. I agreed with him. Nah, I don't have that. How can you have something that does not exist? Please understand my Fibro started in 1988 and back in '88 being a woman with these symptoms was tabu and you were considered mentally unstable. After researching this disease with my daughter and we did long and hard research we came to the conclusion that this is it. When you are told for years this disease does not exist go see a therapist what do you do? I know how doctors treat us as I have seen too many and I do not like doctors to depend on for anything. Nascar and Mariposa this is an angry disease with so much controversy about it. We need to never second guess ourselves and dismiss the medical professions snarky remarks that they don't understand and aren't they the lucky ones. There are 5 million people out there with this malady. Let's face it, there has to be doctor's out there with it. Are they living on narcotics to get through? They are out there and won't step up. Until there is a well known actor or celebrity that steps up to the plate and admits this exists we are going to be dismissed. Venus Williams has Sjogren's and stepped up to the plate and that means we are getting closer to someone well known admitting they have this disease. Has anyone ever checked famous people with fibro? I guess that is my next step. Hang in there. This is a tough one.
 
Good morning, SanibelCaptiva... Welcome to the forum and I'm so glad you jumped in here! I'm sorry you had to go through that with your primary... to have not agreed with a top neuro is pretty arrogant, isn't it?!

I should say that my doctor story wasn't fibro related but rather just something he told me last time and is probably trying to cover his tracks now. Maybe I should have mentioned how terrible what he said sounded. :roll:

I did a quick search on what you asked concerning celebrities. I didn't recognize most of them but those I *did* recognize are The Bold and the Beautiful's Susan Flannery (she asked for medical leave 6 or 7 years ago..)

For a bigger name, Morgan Freeman. He spoke of his diagnosis in an Esquire article.

The West Wing's Michael James Hastings has fibro... has a website about it, and is doing a film about it.

Still another celebrity with fibro is "little Erin Walton", Mary McDonough. She suffered for a decade before her diagnosis. She also had lupus and Sjogren's.

.... And Sinead O'Connor. Oh, and Florence Nightingale had it, too... caused by an infection in her case, but I'd not use that in making a case to a doctor. Too far back in time and probably not well documented.

There is *no* reason that any doctor in practice in 2014 should be living in the dark ages about this disease. NONE. :-(
 
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I've not been diagnosed with fibro, but I can understand where you guys are coming from. Doctors just don't listen to their patients.

In 2008, I was having terrible abdominal pain that started in August...there were days I couldn't even leave bed. I went to my normal doctor who said there was nothing wrong. I went to a walk in clinic where the doctor said "you're obviously in pain, but I can't find anything wrong." I went to the ER and nothing showed up on tests. In December of that year I finally went to an urgent care clinic (for like the 4th time) and the doctor told them to just admit me to the hospital (it was nearly closing time and I think they just didn't want to deal with me). They did CT scans, ultrasounds, x-rays, blood work and nothing showed up. The doctor finally decided they'd just take my gall bladder out and "see if it helps." The surgeon came in after surgery with 2 gall stones (one the size of a shooter marble and the other a little bigger than a regular marble). He said those were the biggest ones but my gall bladder was packed and if we'd waited any longer then my gall bladder would have ruptured. Hmm...imagine that, a patient knowing something's wrong and tests not being accurate.

In late March I went to my doctor complaining of this widespread pain, tiredness, and just feeling sick. The doctor looked me over and said he didn't see anything. I went back a month ago (my doctor moved) and saw a nurse practitioner who did blood tests and told me since blood tests were fine, she believes it's a viral thing. When I told her a "viral thing" shouldn't last this long, she suggested sending me to a therapist because she thinks I'm depressed. I simply told her "you'd be upset and grumpy too if you couldn't get more than 3 or 4 hours of sleep at night....on a good night." I'm about to go to a different doctor on Wednesday and hopefully he'll believe me. I have an appointment with a "fibro-friendly" doctor, but he didn't have a new patient opening until October.

I'm looking forward to finding a doctor that will say "You know your body and what you're feeling better than I do. If you say there's something wrong, there's obviously something wrong." They do exist...I used to see one, but he retired.
 
Hey Mike... I don't know if that "all in my head" statement was sarcasm (which would be fine because we surely all understand that feeling :) ) or if your doctor literally used those words.

If s/he did... well I'm not sure I'd keep seeing the same doc if you're able to switch. We pay them to continue to do their testing and come up with new ideas and NOT pass this kind of ludicrous and false judgment when someone is having a medical issue! :evil:

I went through something with my own doc just yesterday that left me feeling uneasy. It makes me so mad. I said something about my last visit that I understood him as saying back then. Instead of just telling me what I misunderstood (and this happened TWICE on different issues) he started with "well, that's not true...." Maybe I'm extra touchy, but it really rubbed me the wrong way because it's what I understood him to say last time... I wasn't sitting there lying although that's how he made me feel! Sheesh. :confused:

yes I was being sarcastic. Sarcasm is my refuge when I'm really hurting. Any way I'm glad my wife was with me and we are going forward with trying to get seen someplace closer to the Boston area. Will have to wait and see where this leads. Thanks everyone.
 
I need to ***** for a moment. I have been having episodic neuro issues lately, meaning since fall of 2013 starting around Columbus day. Long story short my wife went with me so she could tell the DR. about what she sees on a daily basis. Left felling more confused and frustrated and still more tests and NO ANSWERS! But then again it's just " all in my head".

So sorry to hear you are frustrated, you have all the right to vent as much as you want. Right now I'm experiencing a lot frustration as well, sometimes blogging does help. You could try as well! There are things I just can't share on here, so I do it on my private blog instead. It helps a lot!

Anyway, I hope you get the answers you are looking for very soon!
 
Good Luck Mike. Thanks Mariposa, pretty cool. Wishing you well Smalltowngirl. Wish we could all have our lives back.
 
That is one of the great things about this board. We can post our frustrated feelings and, actually have people who understand reply with news of hope we can get through this. It is a daily battle that we must wage with this disease. Here we can find comfort with others who are in the same boat as we are. It is actually quite comforting to me. To know I can come to my computer and, find support for something we all have had very little of that with.
 
It is actually quite comforting to me. To know I can come to my computer and, find support for something we all have had very little of that with.

I have heard it said more than once that no matter what the illness or issue, Internet support groups are often much more comforting and do more good than local friends and family. I do believe this.
 
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