Ok, follow up to my rant about Mayo- but a question, quickly-
My final report from neuro at Mayo was full of stuff I didn't say and he pretty much wrote off my abnormal BAER and MRI spots- even though there are new spots.
Anywho- he also said I am unable to be diagnosed within his scope and to return if new symptoms occur. I know docs always say to come back is new issues, sort of like cheap advice, but the unable to diagnose things throws me.. Plus, he didn't say that to my face. Seems like an easy way out of explaining my persisting issues and tests. He did tell me that I will probably be in limbo for life so to move on.... felt so good.
Is this a common approach in MS diagnosing, or other neurological issues...?
(not that I'd go back to him anyways....)
har har har ;)
I just wanted to say I am so sorry about your "non - answers." I personally don't think one should be told they may never be diagnosed. Sure, it may be out of their scope but if it is, at least they could direct you to someone who may be able to help.
That's basically the same thing my neuro told me Monday. That I may just be "undiagnosable".
He sent me to a rheumy, but I think that was just an effort to appease my concern or something. Regardless, it was a dead end -- surprise, surprise. The rheumatologist told me to see a new neuro.
I had also gotten the "come back with new symptoms" spiel too. But when the new symptoms came I couldn't get in to see him for three months. So by then the symptoms weren't "new" anymore and didn't seem quite so urgent to him! Gah!
Anyhow, I don't know what their deal is. I get so mad when I think about how people are suffering, their lives altered so much, and the ones we hope can help just shrug and send us on our way. And collect hundreds (thousands!) of dollars from us while doing so!
I hope you can find peace in whatever decision you make. I'm taking my records and going to get a second opinion. But I completely understand just wanting to give up and walk away for awhile and do it yourself.
I just can't understand why this sort of thing keeps happening. I am having trouble wrapping my head around it.
I started a discussion about this very thing. Please feel free to voice your opinions. Why do you think so many of us (statistically mostly women) treated this way? Are we too much trouble? Do we not communicate well? Is it personality types? Are our cases too difficult and they'd rather spend their time and resources on people who have clear-cut diagnoses? Do we, again as the majority of us are women, get too wordy? Is some sexism involved?
Maybe we can somehow learn how to overcome these dismissive doctor and obstacles.
I have to say - I just experienced something similiar. They (3 neurologists) had decided I had 2 auto immunes and thats why I didn't fit totally in the MS box. If we can explain the other symptom, then we can diagnose the MS we believe you have. So I underwent 5 days of IVIG therapy (it was to help both sets of symptoms). It did nothing ! In fact the following 2 weeks were the most painful times for me so far.
When I went back to the MS specialist, she could not diagnose me, thought maybe I have a pinched nerve or a bulging disc (highly unlikely) and she'll see me in 4 months.
Then I go the MG specialist, he now disbelieves the MG (good call) and wants me to see a neuro opthomoligist (another good call, I like this guy). Unfortunately it will take 3 months to get this appointment
I call my neuro and he's like huh, ok, well let's do the MRI on your spine, but no hurries really. We know you do not have something that will kill you. So basically it's ok you feel, the worse you have ever felt in your live and that they are not even going to pursue it for a while. I usually hear within 2 days about an MRI appoitnment, but it's been a week and no call
I started this last May (which I know is shorter than some), but I had 2 small symptoms, now I have lost 25 pounds (because sometimes swallowing isn't easy) and I live every day in pain.
I did start thinking the things above, why isn't this seriuos to anyone but me? Did I describe the pain in my legs so poorly that she would suggest a bulging disc with no back pain (and this leg pain is raw nerve pain and spasicity)
My plan is to go to the neuro opthomologist and then back to the guy who sent me to her. Even if my eye has nerve issues (which wouldn't surprise me, One eye droops, my face swells around my eyes at random and now htey think my bottom lid is coming up) - could they be related to my other symptoms? I have a million questions after my appt. I feel like they surprise me by what they say so I can't absorb it until the ride home.
In general, For Me, I like the men doctors I have seen for this more than the women doctors I have seen. The men in general, seem to have sympathy and the women are more like let's see how it progresses.
I would think most docs who believe a patient's presentation is beyond their scope of practice offer a referral to another specialist rather than choose to sit and wait.
In fact, my first diagnosing neuro did just that. She diagnosed MS and gave me info about DMDs with an appointment to come back in two weeks to discuss the treatment. By the time I returned she was questioning herself and withdrew the diagnosis BUT she offered to refer me to someone else and instructed the office staff to make sure I had copies of all the notes and test results from their office.
The MS specialist I chose for the second opinion diagnosed MS three months later and agreed to take me into that practice for treatment. It felt traumatic at the time but worked out for the best.
I started my quest for answers a few weeks after you did. I don't know how people go through this for years. I've about come to the conclusion that if this MS specialist doesn't at least have a direction I can follow, I'm going to take a break from the diagnostic process.
I have had so much blood taken, MRIs, a visit to an Opthalmologist (who did find color saturation in my left eye, refractive diplopia and convergence insufficiency and recommended my neurologist evaluate me for Multiple Sclerosis and Myasthenia Gravis) and two neurologists so far. My second one referred me to the MS specialist whom he said was his mentor.
I do have two ovoid lesions in my brain and documented eye problems plus EMG results that rule out carpal tunnel in my right hand and point to something neurological. I realize these things take time.
My first neurologist really made me skittish. It was like he was insulted I was even taking up his valuable time. And he did not look at my brain MRI himself but depended on the Radiologist report. He was an older man who treated me like a little girl who'd skinned her knee.
I just want to communicate well during my MS specialist visit coming up. I guess that's why I have been doing all this thinking lately. Maybe I need to just stop thinking ;)
I am keeping you in my thoughts and prayers and hope you find answers soon. This not knowing is awful, especially when things are getting worse!
Well, I know if they have written things they said they didn't say and said things you said that you didn't, (ok I'm lost in that part of the sentence already LOL), then you need to file a request to amend the notes. Especially if he said he did things he didn't.
That said, have a 2nd neuro picked out! They don't like it when you do that. Or you can type up your changes and attach them to your copy of the file if you are intimidated by this dr.
I have gotten "dismissed" as a patient by 3 doctors for correcting them. Sometimes they now use a menu driven form and the typist may get carried away.
I personally have gone thru 4 neuro's before finding the right one.
I had inaccurate information put in my record too by my first neurologist. Yes, Sarah is right, request to get it taken out but first have another neurologist lined up. That's what I did, too. Neurologist One didn't kick me out, I think in part because some of the wrong information was related to medication that I do not and never have taken. Basically, another patient's information was entered into my record... A big HIPAA no-no.
I think the issue is that neurologists often see only in black and white and textbook patterns. I've seen 8 neurologists in various states and always the same approach. I keep bullet point notes with a timeline in medical terminology- makes no difference. If I'm describing a circle type issue that doesn't fit in a square box then already the apt will not be fully productive. We have to remember these are not all holistic doctors- often they skip the bigger picture. It's sad and frustrating, but i believe it's in line with their focal thinking. The question is how to deal with that school of thought.
While there may not always be answers, docs who default to the "undiagnosable" conclusion too quickly should be fired. A good doc will recognize the limits of their expertise and refer you elsewhere.
The first neurologist I saw told me she was 85% sure I had MS and that I needed to see an MS specialist. She didn't waste my time, or hers. She was confident enough in her own abilities to know she couldn't help me.
Agreed. The neuro I saw today was exactly like that. I could tell by the way he looked at me that the words coming out of my mouth might have just as well been Swahili. They didn't fit a textbook norm, so they just sounded weird.
Ironically, to me my symptoms sound very "textbook" and many have been described word for word by other folks here. Sigh.
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