ok, have fun reading this:
when local neuro mumbles the test results after [you remind] him you had tests done and now wanting to know the results. states he cannot make a diagnosis, much data is subjective he states, although test results contradict him...MRI, LP & hx.
at the same time the other doctor, a ms specialist in another state, has written down "diagnosis, demyelinating disease of the cns" and he tells you on the phone he has ruled out most everything else and is pointing to ms and a treatment plan after vep test. he asks, didn't your local neuro mention this to you, i spoke with him about it? i told him no. talk about being left out of the loop!
local neuro tells me they don't do VEPs here. tells me to call my ms specialist's office to set up the appt in that state. i call that office, they say they want the test done here in this state, no sense in flying there. i get nowhere with appt division here about this except that the hold up is they are trying to figure out who is going to pay for the appt. do what?
then a voucher comes in the mail stating consult from local neuro to eye neuro for appt here in this city for vep. guess what? that office building is just behind the local neuro's office building! what, he didn't know this when he stated they don't do vep here? sure, i'm gullible doc, keep em coming!
approx 4 months later from original request for vep from ms doctor, local neuro gets me an appt.
local neuro? he still can't believe the lp was positive!! said mri's didn't show anything although the radiologist's impression was "demyelinating disease, same as last mri"
my ms specialist from what i can tell so far is top notch. working to find a root cause and develop a treatment plan.
and yes, in the VA system i can request another local neuro.
what do you think, time for a new local neuro? LOL LOL LOL
[where ya at glenn beck, where ya at?]
I should have known to get a new doctor when I went in because I could barely stand up straight because I was in so much pain, mainly in my back (where I found out I had a lesion). A couple of years later, as I'm going through my old medical receipts, I find the one from that visit and noticed (which I foolishly hadn't before) that they wrote my dx for that visit as "gout". Wow. READ YOUR RECEIPTS/DISMISSAL PAPERS, EVERYONE! I could have saved myself a LOT of time, pain, and money. He didn't even give me a verbal dx that day, just blew me off, as always. Ta-ta, loser! lol
Wellllll, I could talk about this for hours, but this is the reason why I am seeking a 2nd opinion...I have many many symptoms associated with MS that this current neuro. initially was concerned about..well, once I had the MRIs, one in October, and the last one in March, additional lesions formed on the one in March, plus the report states "differential diagnosis would include MS..." and I have the lesions and symptoms to show for it (check out my MRI images on my page) but he says, "Well....no, not MS, nothing is wrong because you don't have enough lesions and they're not big enough...you could have had a stroke, you could have migraines, etc..." And then I was shown the door....left his office without any other help whatsoever, and whatdaya' know, I still have these symptoms more than a month later, they come and go, but the balance and 'drunk' feeling is almost always with me, as well as many others!! I'm 22, I do NOT have heart disease, no vascular disorder, no history of trauma or infection, nothing, but everything points to neuro...I digress!!! :-)
Here's another way of knowing when it is time to GO to a new DOC -
IIf all the while you are discussing your medical care with you doctor and he/she is writing prescription one after another, then hands you a stack of scripts at then end...it's time to look for someone else.
When the neuro tells you your test results are normal & hands you a prescription for a valium type medication and ushers you out the door in 13 minutes - without any option for me to ask any questions.
Keep em' coming - Here's another for ...
After I told the Dr. (same appt.) about inability to fall asleep or stay asleep, he asked me "did you ever consider sleep meds?" The very same Dr. who wouldn't prescribe me sleep meds last visit or so because the last one's I was on, I might of been allergic too (though I brought up the name of a different med that wasn't in the same family).
Acted this time like it was a novel concept and we've never discussed it before. What the? It's like Drew Barrymore and Adam Sandler in 50 1st dates!
I had a Neurologist (Dr. M) that I had been seeing yearly for many years. I saw her in Oct. 2006 and was treated with IV Steroids. In Feb. 2007 I had relapse of symptoms and needed to see her but was told she was booked up for 3 days. I proceeded to see a Neurologist (Dr. W) who agreed to see me on a emergent basis (IV Steroids again) and I continued to see him after he stated that "he would treat me as long as he was the only Neurologist I saw about my problem". After about a year, HE SUGGESTED I GET A SECOND OPINION! I attempted to go back to see the initial Neurologist (Dr. M) and was told that unless she received a letter of apology from my gp I would not be able to see Dr. M. My gp complied and I saw her but only to hear that my "MS is in-active and therefore you don't need the disease modifying drugs" after looking at me for 5 minutes!
SO...I was told by Dr. W. that he would treat me as long as I only saw him and then when he couldn't figure out what the problem was and asked me to get a second opinion, Dr. M had her panties in a knot and wouldn't see me without a letter of apology because I had seen Dr. W. WHAT A TOTAL CROCK!!!
Needless to say, I haven't been back to see either of them and I think I have finally found a Neurologist that seems to care about ME...not about who I am seeing and if I am seeing the "enemy"! This all took from October 2006 to February 2008 and I am never going to allow myself to be a victim of this sort of B.S. again!
You know its time to move on from your doctor when his nurse gives you a half an hour lecture on anxiety and the health problems associated with it. Then proceeds to feel inspired and empowered to right a poem about you in your face with things you have consistantly told her and the doctor you were not experiencing before the onset of your problems and they are insisting you are. She even gave me a copy and I made copies and handed them out to my co-workers whom I in return gave them the same lecture on anxiety, lol.
You know its tiime to move on from your doctor when your doctor (neurologist) tells you "Pathology is black and white" (all my neuro exams came up normal with the exception of the EMG on my right foot was abnormal). I proceed to tell him "my pathology is not black and white, its grey and off white."
I canceled my last appt and when asked why I gave the secretary (who was very nice to me) a ear full.
I have been to my neurologist 3 times, and figured it was time to get a new doctor when after the first visit seemed to go so well, ordering tests and all (even though he was rude) the 2nd and 3rd visits came around and hes busy trying to put off some back surgery that I am having that is obvious that I need, that I have been dealing with since 2005. He says, 'I just want to make sure you don't have any kind of deficiencies that could be causing your pain in your back.' HELLO??? Didn't you read the report from the place that I had the CT scan after the discogram done? (yes he did, right in front of me, and I gave him copies of my MRI's and its obvious WHY I have the pain, so I just need to correct it even though I am not even going to the neuro for this)
Basically after 3 visits and all he wants to do is focus on my back surgery, I went to my orthopedic doctor (the one for my back surgery) and explained the situation, and he was very unhappy because we have been concerned about MS, or CFS, or maybe fibromyalgia, but this neuro didn't even pay attention to my symptoms, so my ortho said we'll refer you to someone else. Unfortunatley I couldn't get an appt with them until June 2nd, but I called today and asked some questions about the practice, and they got me in a whole month sooner!!! With an MS specialist!!! So I am hoping that this person can either rule out MS or help me figure out if it is MS so we can do something about it. I am 25 and have a 5 month old daughter and my symptoms are limiting my mobility and time with my family. So it was definatley time for a new doctor, and I think today was a sign that things are looking up. At least I hope. :)
I don't think anything I can recall can compare with some of these stories. My first alleged neurologist talked about the radiologist's comments as though he had looked at the images and decided the radiologist was all wet. It was easy to see that he had either not looked at the images at all, or had briefly skimmed through them, without paying a lot of attention to anything smaller than a dollar bill. He clinched it, though, when he tried to talk about the cisterna magna, which the radiologist had mentioned, and despite my knowledge to the contrary (thank you, MedHelp and Wikipedia) insisted that it held blood rather than CSF.
I will say this: I am on my 5th neuro, but #2, an MS specialist and researcher with credentials coming out of his ears, sent me to #3 (a young general neuro), who sent me to #4 (neuro-ophthalmologist) and #5 (neuro-psychologist). So if you count the one I fired as a learning experience, I guess i'm not as bad off as one might think. My suspicion is that all these underlings will eventually send me back to the guy who makes the big bucks, once they test the Dickens out of me. Maybe I am their learning experience. Maybe I have both Lyme disease and migraine; who knows? More tests....
Trying to get the neuro-psych thing set up this week, since I'm off anyway, but I'm not holding my breath.
I was reminded it was past time for a new neuro when my neuro of at least 15 years told me not being able to walk well or far (after having had diagnosis 36 yrs) was TERTIARY symptom. I still don't know what she meant or might have been implying, but I didn't see ANY need to go back. Jane
When you get LECTURED instead of LISTENED TO. (Internists.)
When they make up their mind before you've opened your mouth. (Internists/rheumatologists again. Don't like 'em.)
When they focus on certain convenient details while ignoring the big picture, then accuse YOU of focusing too much on details.
When they pick and choose stuff to put in their report in order to paint the picture that's most convenient for them, and who cares about the consequences when doctors down the line read misleading or outright false reports.
When they interpret every question (other than "how many times a day did you say to take this pill?") as a sign of an "anxious patient." (That stinking internist "Doctor" S. again!! But she wasn't a real doctor, I'm convinced. As a "doctor," she was a bigger fake than Dr. Jan Itor on "Scrubs.")
Where do I begin, oh, boy, this is my hobby horse!
When the surgery sends you an unscheduled appointment out of the blue and you are not supposed to see the Neuro for another 5 months.
You arrive at the appointment and ask him why you have been brought in early and he says he doesn't know.....?
He asks you have you experienced any new symptoms and you say YES and tell him....
The whole time he doesn't even look up at you and keeps scribbling down in his notes....He's probably writing about how neurotic he thinks you are!
He hasn't bothered to tell your family Doc in writing that he put you on high doses of Tegratol. You then have to go back to the dispensing Chemist to get the dosage so your Doc can renew your script.....
He blames your symptoms on Valium.....and you only take one if you can't sleep.
Obviously he thinks you are an addict....."Stop taking so many!"
He is convinced you are an alcoholic because you enjoy a glass of wine with a meal.
He tells you to stop.....so you STOP altogether, then.... you tell him there is NO difference in your symptoms....
He then says you won't recover THAT fast, it takes years and years.....
He then adds,
"Well, if it's not that it must be the PAIN MEDICATION" and your high bp meds.....
Then he adds,
"Oh no, wait on....Tegretol can also cause those symptoms".....
blah blah blah
You are in his room for no more than 5 minutes in total and he doesn't even bother to examine you, not even make you walk the plank.
He almost shoves you out the door and says "Go and see your family Doc about your dizziness, your lethargy, weakness, numbness, pins and needles, and I'll see you in 9 months time"
He shakes your hand "dead fish" style as you leave and all you really want to do is
pull his arm out of it's socket.
He won't look you in the eye, a dead give away it's time to go.
That was finally enough grounds for a DIVORCE
I was diagnosed on the 30th of March 2009 with CIDP after putting up with this for 3 very long years.
I do have a disease and my NOW very professional, polite, caring, and truly gifted Neurologist diagnosed me in less that 1 calender month.
Actually, he diagnosed me the 1st day I went to see him.
I was with him for just ONE hour and he told me at the end of the consult that he was 99% sure I had CIDP.
He wanted to be 100% sure and said I would have a confirmation of either CIDP or MS within the month and he would tell me after he personally did nerve conduction studies on my legs and arms.
I had 5 wks before finished a couple weeks of double vision and was now rushing to a new neurologist who is a "MS specialist". It was Spring and I was in a great mood. In rushing I felt something like an eyelash get into my eye but did not want to be late and figured I'd get it out once I could get to a bathroom at the new neuro's - 1.5 hour carride away - obviously it was not so bad as I could drive without a problem.
It was definitely more irritating by the time I got to the doc. Since this was a first visit she did all the preliminary MS tests - pokes, gait, shining light into my eyes, etc.
By now my eye is definitely irritated, watering, scratchy feeling, but in the bathroom I could not locate the irritant. Trying to stay light hearted I mentioned when she was looking in my eye with the light maybe she can find the eyelash that got in there this morning.
She did not find this humorous. After the testing she said it appears I have moved into the early stages of "progressive ms". She was kind but firm about my needing to let go of my denial. She pointed out I was not so young anymore (I was 37 and I had been diagnosed at 33). She pointed out that the "scratchy" feeling in my eye was a "classic example of MS" despite my 2-3 times pointing out that I knew early in the morning I had gotten something in my eye. I got back in the car and drove the whole way back in tears (which, of course, was helpful!) but not helpful around not getting lost on the way home as I was such a wreck by then.
Got home and immediately went into my bathroom to try one more time to figure out whatever was going on in my eye. Found a gooey-coated two inch long hair that had somehow wrapped itself around my eyeball!!!!!!
Removed it, and voila! this MS symptom magically disappeared.
That was my fourth neuro more locally. Finally headed to Boston (2-3 hr drive) after 6 years of trying to give local neuros "a chance" and cannot believe the difference from a major MS Center hospital! Good, straight to the point, and progressive, evolutionary knowledge.
(and with the Boston doc and his intern there was no mention of having moved into the "progressive MS" stage)
As much as I've crabbed about my former docs I am delighted to vent again.
When it is time to get a new doc?
1. When the doc does not make eye contact when talking to you.
2. When the doc is busy on his/her computer and seems not to hear you.
3. When the doc refers you to a neuro for Vertigo, when you have given him/her tons of other symptoms
4. When the neuro walks in and without looking at your MRI or files says that you are too old to have MS
5. When the neuro constantly talks in medical jargon that most people can’t understand and then gets all puffed up with self importance when you ask him/her to explain what was said in English
6. When the neuro’s staff treats the doc with too much hero worship.
7. When the doc tells you ‘you might just have Conversion Disorder’
8. When the doc refuses to answer your questions or answers them in a condescending manner.
9. When your ‘gut’ is telling you to find better people to work with.
10. When you feel like you’ve been devalued, misunderstood, ridiculed, or you start to feel hopeless.
I had all of the above happen to me. I’m so glad I fired them both, Charley.
When the doc googles your symptoms
My Old Neuro, NOT MY NEW ONE, told my aunty, my mother and my grandmother that I had Multiple Sclerosis, (my aunt was his house keeper), my mother his patient for brain tumor and my grandmother, well she just knew him.
They knew more about what was wrong with me than what I did. Infact I hadn't even bothered worrying my mum that I was going to him as I figured she had enough to worry about herself and seeing my diagnosis wasn't confirmed at that stage and I didn't even know that MS was even a possability I was rather disappointed.
I was very angry and upset as this was confidential information that he had no right to discuss with some aunt that I barely had anything to do with. I told him at my next appointment when I asked a question and received a very brief answer that perhaps I should make an appointment with my aunt as she seems to know more than myself. I think he got the message but after that and even before that I never liked the man, but my new Neuro ticks all the boxes of being a good neuro.
Sad but true story.
Udkas. (by the way I don't have a diagnosis of MS)
when your neuro tells you that you definately don't have ms, then refers you to an ms specialist and when you ask ...Why an ms specialist if I don't have ms...he says, well, we can't rule out ms. W T F???? You just SAID I dont' have ms.
Then he says.....
Wait for it.......
..."And if that doesn't work, we'll just drill holes in you and let the evil spirits out..."
Oh goody... I got the FUNNY neuro!!!!
When your doc takes multiple cell phone calls, or stares at his phone to see who is calling, during your appointment.
When your doc falls asleep during your appointment.
Pretty bad if the doctor falls asleep during your appointment
Sad, but too funny LOL
When the doctor calls you in after your most recent MRI and tells you that you have MS. Then turns around a month later, after giving you brochures on the different crab medications in order for you to pick one, and tells you that you don't have MS after all. That you were born that way!!!
Yep, I was born with 20 brain lesions and 1 black hole and I just noticed the symptoms from them almost 40 years later.
Needless to say, I haven't been back.
Yeah, I love that, when the doctor tells you you have MS, and then at the next appointment suddenly you don't! Why is that so common? WHAT IN THE WORLD are they trying to accomplish with this??
OK, I understand MS can be tricky, hard to diagnose, new test results can change things, but they shouldn't TELL you you have MS before they're sure you do and intend to make the diagnosis official and sticking. Why not just "We need to check out the possibility that it's MS," or "It could be MS," instead of saying it like it's a done deal, and then all of a sudden it's NOT, and you become, in their eyes, an anxious patient for being concerned about MS!
Whose idea was that anyway, Doc? YOURS. If you don't mean it, don't say it! And then how are you supposed to trust ANYTHING the doctor says after that?
Geez, that reminds me of my son and my husband. They say stuff, and then they say, "But I didn't mean it."
If you said something, you meant it. It didn't come out of nowhere. So admit it, and explain yourself.
I don't know if I could top many here, but the doctor shuffle seems to be story of my life. This last one prescribes a very toxic drug he knows nothing about, I have severe allergic reactions (not life threatening but fortunately know what they are so having learned from specialist so I don't panic) and ask him for hydro cream and he tells me he doesn't know what to do, he hasn't had time to read literature.
Hey doc, have you heard of the term side effects?