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How Many Neuro's Have You Seen So Far???!
Hi all! This one is for Pastor Dan :) It started on a question posted on the forum and turned in to - How many neuro's does it take to change a light bulb?! LOL That was Pastor Dan not me - here's the poll - thanks for answering.
This is for dx and limbolanders so that nobody especially my buddy is left out :)
I posted my vote first and thought that I would share my number is actually 10 but I am only allowed so many lines on a poll so that's why it ends with 9 or more either with or without a dx.
Looking forward to seeing the numbers. I think that some of our friends that are still in the early stages of the journey think that more than 1 neuro is a lot. I think if we get a large poll turn out it might help ppl to be less afraid to fire a bad neuro and move on or they might appreciate how few they had to see to find one worth keeping! Lets find out.
Hugs,
Erin :)
Diagnosed by #11 who left the state. Currently seeing #12
1 through 9 never considered MS. But, then, I didn't either. I thought I had garden variety vertigo.
#10 emphatically told me I did NOT have MS because I was too old and my MRI was normal. Neither of these were accurate.
Quix
1 through 9 never considered MS. But, then, I didn't either. I thought I had garden variety vertigo.
#10 emphatically told me I did NOT have MS because I was too old and my MRI was normal. Neither of these were accurate.
Quix
1 neuro for me...Diagnosed straight off the bat!!! A bout of Optic Neuritis and Greater than 20 lesion's on my MRI.....that said it all!!!
My first neuro diagnosed me on a careful history, physical, and an MRI with very few inactive lesions. I saw a second neuro (an MS specialist) for a second opinion, and she cast some doubt on my diagnosis, but then said I was on the best regimen I could be on. She did add a couple more supplements.
I'm up to about 20 Neuros, but this is not really fair in my case as every time I see a neuro at the VA it is a different one.
Dennis
Dennis
Thanks for this poll!! I LOVE IT.. LOL I thought you just need to give it up and believe all the misdiagnosis' :) Pam
I'm still seeing neuro #4 and was referred to an MS specialist (neuro #5) through them. I don't have any diagnosis that I'm aware of, but I'm currently trying to get a referral to neuro #6.
I've been told by more professionals..doctors, opthamologist, internist, urogynecologist, etc..that my symptoms fit with MS. Neuro # 4 even thinks that everything fits with MS but doesn't want to DX because of the non typical lesions on MRI.
At this point, I don't care what I have. I just want answers and some treatment.
I've been told by more professionals..doctors, opthamologist, internist, urogynecologist, etc..that my symptoms fit with MS. Neuro # 4 even thinks that everything fits with MS but doesn't want to DX because of the non typical lesions on MRI.
At this point, I don't care what I have. I just want answers and some treatment.
One in 1965 could not figure out severe neurological symptoms.
In 1979 they said double vision was neurological and permanent.
In 2007 PCP failed me on Neurological exam on yearly check up sent me to a Neurologist who was doing an MRI for Arnold Chiari or AVM. After MRI he said four Neurologist looked at MRI and think MS but he was leaving town and sent me to another Neurologist who would not look at his report or MRI and said it was not MS.
She sent me to an Neuro Othamologist who said MS.
I went back to PCP she sent me to an MS Specialist who said it could not be anything but MS, but would not diagnose it for another year until my LP came back with 12 o-bands. He told me I had RRMS but would give me copaxone but he would not treat my symptoms.
I found another MS Specialist who diagnosed PPMS. I like him very much.
Alex
In 1979 they said double vision was neurological and permanent.
In 2007 PCP failed me on Neurological exam on yearly check up sent me to a Neurologist who was doing an MRI for Arnold Chiari or AVM. After MRI he said four Neurologist looked at MRI and think MS but he was leaving town and sent me to another Neurologist who would not look at his report or MRI and said it was not MS.
She sent me to an Neuro Othamologist who said MS.
I went back to PCP she sent me to an MS Specialist who said it could not be anything but MS, but would not diagnose it for another year until my LP came back with 12 o-bands. He told me I had RRMS but would give me copaxone but he would not treat my symptoms.
I found another MS Specialist who diagnosed PPMS. I like him very much.
Alex
I have only seen 1 neuro. Have been with him for the past 2 years. At first I was iffy about him but something changed and he started taking me more serious and listening to me. :)
Paula
Paula
I'm on my 7th, But I have moved 4 times since I started having neuro symptoms, so it's not really a reflection of the neuros.
I don't know whether I am diagnosed or not. My current MS specialist is treating me with steroids and other symptom management, occasionally uses the MS diagnosis code, but doesn't tell me I have MS during appointments and doesn't use DMDs without the MRI proof she likes. But also says there is obviously something the MRI isn't seeing. I don't really feel like I'm in limbo anymore.
I don't know whether I am diagnosed or not. My current MS specialist is treating me with steroids and other symptom management, occasionally uses the MS diagnosis code, but doesn't tell me I have MS during appointments and doesn't use DMDs without the MRI proof she likes. But also says there is obviously something the MRI isn't seeing. I don't really feel like I'm in limbo anymore.
I'm in Limbo Land am on neuro #3, who I just started seeing in March.
Saw #1 in 2002-2003. Totally focused on Meniere's Disease. Dropped him after I brought my father with me to an appointment so that I got another opinion this guy was a quack.
Saw #2 in 2007 when I could not overlook sx anymore. Only a couple of visits and was basically brushed off. Was told I had some small white spots on my brain, but they could not be causing my problems.
Started with #3 this year who specializes in MS. Just before first visit, got my hands on the radiologists report (wish I had joined this forum years ago!) and found that I had multiple lesions up to 7mm in size, suggestive of demylinating disease. 1 appt. in Mar, 2 in May, 3 in Aug and next scheduled for Feb (due to some other medical situations that she felt had to be investigated;they were quickly resolved). Don't know if this report will have her move my appointment sooner or not.
Mar 2010 brain MRI showed another lesion. Six month follow up MRI done this week shows another lesion, the largest is now 10 mm and several lesions have increased in intensity. In a nutshell, my brain is showing progressive deterioration, as are my sx, which are still relatively mild given the spectrum of possibilities.
I'm going to post this in my journal so people can respond there, rather than disrupt this thread. My questions are:
1) When you've been in the diagnostic stage, how frequent were your appointments?
2) How often did you correspond (by telephone or fax) with your doctor and on for what reasons?
3) If you changed doctors, why did you do so and how did you come upon your best neuro?
4) What advice, if any, would you offer me and others in my situation now?
Audrey
Saw #1 in 2002-2003. Totally focused on Meniere's Disease. Dropped him after I brought my father with me to an appointment so that I got another opinion this guy was a quack.
Saw #2 in 2007 when I could not overlook sx anymore. Only a couple of visits and was basically brushed off. Was told I had some small white spots on my brain, but they could not be causing my problems.
Started with #3 this year who specializes in MS. Just before first visit, got my hands on the radiologists report (wish I had joined this forum years ago!) and found that I had multiple lesions up to 7mm in size, suggestive of demylinating disease. 1 appt. in Mar, 2 in May, 3 in Aug and next scheduled for Feb (due to some other medical situations that she felt had to be investigated;they were quickly resolved). Don't know if this report will have her move my appointment sooner or not.
Mar 2010 brain MRI showed another lesion. Six month follow up MRI done this week shows another lesion, the largest is now 10 mm and several lesions have increased in intensity. In a nutshell, my brain is showing progressive deterioration, as are my sx, which are still relatively mild given the spectrum of possibilities.
I'm going to post this in my journal so people can respond there, rather than disrupt this thread. My questions are:
1) When you've been in the diagnostic stage, how frequent were your appointments?
2) How often did you correspond (by telephone or fax) with your doctor and on for what reasons?
3) If you changed doctors, why did you do so and how did you come upon your best neuro?
4) What advice, if any, would you offer me and others in my situation now?
Audrey
Q,
Well I thought that I would take the prize for the most neuro's with 10! I should have guessed that you would have a higher number, lol. It looks like if you and I stay where we are our fellow members will pass us soon :)
Dennis,
Yep that isn't a fair number at 20 since you aren't choosing to change etc. I think that it stinks actually that you can't have the same neuro at the VA everytime so that you can form a bond better.
Hugs,
Erin :)
Well I thought that I would take the prize for the most neuro's with 10! I should have guessed that you would have a higher number, lol. It looks like if you and I stay where we are our fellow members will pass us soon :)
Dennis,
Yep that isn't a fair number at 20 since you aren't choosing to change etc. I think that it stinks actually that you can't have the same neuro at the VA everytime so that you can form a bond better.
Hugs,
Erin :)
I've seen two neurologists, but prior to this I saw three rheumatologists.
When my sister was diagnosed with MS, I suspected that it could be neurological and set up an appointment with a neurologist near me. I was having migraines, so I had an open MRI run by my GP to rule out brain tumors. The first neurologist looked at the results of this MRI and said I couldn't have MS without a full neurological exam or another MRI. He said he was positive that I didn't have MS like my sister.
I told my sister that I didn't have MS, and she insisted that I see her neurologist. She had discussed my case (the symptoms similar to hers and some of the tests I've had) with her neurologist. He said to her that an open MRI is completely bogus and it was too old.
I set up an appointment with my sister's neurologist, which is a two hour drive away from where I live, and was shocked to see lesions on my brain from this second MRI when the neurologist looked at the MRI with me. I was diagnosed as having a demyelinating disease. After a second MRI (third technically) and LP, I was diagnosed with MS.
Sorry for the long story, but I always feel the need to try to help people in limbo. For years I went without a diagnosis, and it was h*ll. If there's anything in my story that could help anyone, I want to do that.
When my sister was diagnosed with MS, I suspected that it could be neurological and set up an appointment with a neurologist near me. I was having migraines, so I had an open MRI run by my GP to rule out brain tumors. The first neurologist looked at the results of this MRI and said I couldn't have MS without a full neurological exam or another MRI. He said he was positive that I didn't have MS like my sister.
I told my sister that I didn't have MS, and she insisted that I see her neurologist. She had discussed my case (the symptoms similar to hers and some of the tests I've had) with her neurologist. He said to her that an open MRI is completely bogus and it was too old.
I set up an appointment with my sister's neurologist, which is a two hour drive away from where I live, and was shocked to see lesions on my brain from this second MRI when the neurologist looked at the MRI with me. I was diagnosed as having a demyelinating disease. After a second MRI (third technically) and LP, I was diagnosed with MS.
Sorry for the long story, but I always feel the need to try to help people in limbo. For years I went without a diagnosis, and it was h*ll. If there's anything in my story that could help anyone, I want to do that.
2 neuros,
5 opthalmologists,
1 urologist,
1 ear nose and throat specialist,
1 ER Dr.,
3 clinical medicine doctors,
1 hematogist/ medical oncologist
my diagnosis took two years, and a dozen doctors. I would go to my GP and she would refer to different doctors because of my symptoms. (vertigo, bladder retention, leg problems weakness,, and foggy vision etc.)
Was refered to MS specialist by the Urologist, and he was quick to say I did not have MS (negative MRI), but would not address or validate my symptoms. Ended up getting acutely ill, went to ER who ran basic blood tests and found irregularities, so referred me to ambulatory clinical medicine (like HOUSE tv show). went to that apointment and got diagnosed with cancer and admitted to hospital for stabilization and induction chemo.
5 opthalmologists,
1 urologist,
1 ear nose and throat specialist,
1 ER Dr.,
3 clinical medicine doctors,
1 hematogist/ medical oncologist
my diagnosis took two years, and a dozen doctors. I would go to my GP and she would refer to different doctors because of my symptoms. (vertigo, bladder retention, leg problems weakness,, and foggy vision etc.)
Was refered to MS specialist by the Urologist, and he was quick to say I did not have MS (negative MRI), but would not address or validate my symptoms. Ended up getting acutely ill, went to ER who ran basic blood tests and found irregularities, so referred me to ambulatory clinical medicine (like HOUSE tv show). went to that apointment and got diagnosed with cancer and admitted to hospital for stabilization and induction chemo.
Diagnosed RRMS with # 1, off to # 2 in search of someone who seems a bit more interested in MS.
I just checked the results so far and I am shocked! It seems like the vast majority both diagnosed and undiagnosed only had to visit 1 to 3 neuro's to get dx. REALLY?
Am I the only one that is surprised by this? I know that my brain is a bit screwy but I really thought more of us had to go from one to another to another etc.
Maybe more ppl just need to tune in and vote and the numbers will change again.
Thanks to those who have voted and shared so far. Have a great weekend!
Hugs,
Erin :)
I had my first MS symptom in April 2001. I was referred to my one and only Neurologist who diagnosed me in July 2001 after I had 2 more exacerbations one in May and one in June. He had me do two MRI's one of my brain and one of my cervical spine.
My brain MRI came out negative. It would seem that most of my lesions are on my cervical spine.
I had never heard of MS until after the MRI and I was talking to the radiologist while they were looking at the results, they mentioned that it looked like MS and then they abruptly looked up at me and said "but only your neurologist can tell you that for sure".
It was after that that I looked online about MS and about scared myself to death :)
It was a whirlwind of blood tests, and more blood tests, followed by a lumbar puncture that he performed in his office. It was after those results came back that he gave me a definite diagnosis.
And we have had an ongoing relationship ever since, professionally speaking of course :)
My brain MRI came out negative. It would seem that most of my lesions are on my cervical spine.
I had never heard of MS until after the MRI and I was talking to the radiologist while they were looking at the results, they mentioned that it looked like MS and then they abruptly looked up at me and said "but only your neurologist can tell you that for sure".
It was after that that I looked online about MS and about scared myself to death :)
It was a whirlwind of blood tests, and more blood tests, followed by a lumbar puncture that he performed in his office. It was after those results came back that he gave me a definite diagnosis.
And we have had an ongoing relationship ever since, professionally speaking of course :)
Not diagnosed with anything.
Have seen 4 neurologists since 1999 but I really only count 3, because the first one did not tell me anything, just referred me to an ear specialist.
The 4th one was last year but he didn't take me seriously, and I returned the favor. :) I only saw him once. He had made up his mind nothing was wrong with me before he listened to me or examined me. He told me I didn't have MS 15 seconds after I started talking.
I had 4 MRIs between 1999 and 2003 (none since), all showing small changing spots, but nonspecific ones. I never got any other MS testing--no spinal tap, no evoked potentials except auditory--and those were highly abnormal. Apparently that means absolutely nothing.
I gave up expecting any diagnosis many years ago. The appointment last year was a crazy idea! The Lhermitte's and shocky face and wimpy legs remind me every day that something's wrong, but I will never see another neurologist.
Have seen 4 neurologists since 1999 but I really only count 3, because the first one did not tell me anything, just referred me to an ear specialist.
The 4th one was last year but he didn't take me seriously, and I returned the favor. :) I only saw him once. He had made up his mind nothing was wrong with me before he listened to me or examined me. He told me I didn't have MS 15 seconds after I started talking.
I had 4 MRIs between 1999 and 2003 (none since), all showing small changing spots, but nonspecific ones. I never got any other MS testing--no spinal tap, no evoked potentials except auditory--and those were highly abnormal. Apparently that means absolutely nothing.
I gave up expecting any diagnosis many years ago. The appointment last year was a crazy idea! The Lhermitte's and shocky face and wimpy legs remind me every day that something's wrong, but I will never see another neurologist.
11 neurologists - many tests - many years - out much money with still no diagnosis.
You know something's up when you realize it only took Lou Gehrig 6 days of testing for them to diagnose him with ALS many years ago. And back then they had less medical knowledge/sophistication than we have today. But there was more honesty then and less greed. The name of the game today in our country seems to be selling us a lot of tests and delaying diagnosis indefinitely. It is a very cruel thing indeed.
WAF
You know something's up when you realize it only took Lou Gehrig 6 days of testing for them to diagnose him with ALS many years ago. And back then they had less medical knowledge/sophistication than we have today. But there was more honesty then and less greed. The name of the game today in our country seems to be selling us a lot of tests and delaying diagnosis indefinitely. It is a very cruel thing indeed.
WAF
Nancy,
I feel sad when I read the statement that you will never see another radiologist again. I can feel your frustration and hurt! Sometimes we just have to take a break for a bit and "pretend" that nothing is wrong. But eventually you have to get back on the horse and find a good doctor to give you the care & treatment that you need.
As the poll has reminded you - you are not alone! I have seen 10 neuro's and others have seen more. Don't give up because your health depends on you to continue the journey - remember that we are here for you!
WAF,
Your comment about the great Lou Gehrig reminded me of my favorite doctor (not a neuro) at the time around 1997 - still undx.
ALS was one of the things they tested me for and she said that it was impossible because it would have killed me by then! Like other doctor's I could tell she had given up. She believed that something was wrong but had no answers so she told me that.
Then said unfortunately you might have to wait until you get bad enough that an idiot could dx you!!! Can you believe that? I can't remember but I think I even went back another time or 2 after that - I guess I was the idiot, lol.
Don't give up! I was dx by the insistance of a chiropractor who basically made my primary doctor affraid that if she didn't run some tests I could die and it would be her fault!!! That's when I found neuro #10 who I still see.
Hugs to you both,
Erin :)
I appreciate your kind remarks. That comment the MD made to you about "it couldn't be ALS because it would have killed you by then" is pure unadulterated BS that I have heard countless times. Yet on the DVD produced by the MDA one of the first statements they make is that ALS presents in many different ways and can be of slow progression. Some have lived with it for several decades - even 44 years!! So that statement is just another way of blowing you off and not really investigating.
Right now I feel like I am dying.
WAF
Right now I feel like I am dying.
WAF
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