Aa
Undiagnosed??? Mayo or Cleveland Clinic?
I met with the MS Specialist at Vanderbilt today. I am so confused and tired, so tired. First off, it was apparent that this DR does not like the MS specialist that diagnosed me! I feel like a ping pong ball between the two. I just want to feel better.
He basically told me that my former DR whom I love and respect too easily diagnosed people with MS and that he had some kind of "God" complex. When I paid out of pocket last month to have my old neuro read my MRI, I told him that I had an appointment at Vandy. He told me that "they aren't very friendly, they are dismissive of women's symptoms and they will probably suggest it's your hormones".
Today's neuro told me that my MRI"s were completely normal. When I told him that the other neuro had went over them with me and pointed out lesions in various places including Dawson's fingers. He wanted me to show him where! I sent my husband to the truck to get a copy of the first MRI report that had images of my scans with little arrows pointing to the lesions he had found. he looked at one after the other and would say, "I can see why he would say that". He back pedaled a bit and said I may have MS, but if I do, there is not enough evidence to diagnose me.
He suggested that it was my hormones that was causing my memory problems and to have them checked again(they were normal earlier this year)! He is thinking that my diagnosis is Mixed Connective Tissue Disorder and ordered some blood work. He also referred me to a urologist since I've had several bladder infections treated with antibiotics which then cause yeast infections. I briefly did a search on this and I'm not convinced but am open to exploring other avenues.
He kept pressing that I had been going to the other neuro for a year and do not feel any better. He asked if the Aubagio made me feel any better. I told him no but that it was my understanding that DMD's don't treat symptoms. It was like he was trying to ask questions that would somehow prove that me and/or the other neuro are quacks! He said 2 or 3 times that I had no O bands in my spinal fluid. I finally said that I didn't think that o bands would necessarily prove or disprove MS that my understanding was that it is mostly a clinical diagnosis made after excluding other MS mimics.
I told him that the best news, ever, would be that I didn't have MS but that I do have something going on and I just want to feel better. I told him from my research that I have come to believe that I have a progressive form of MS or I have something else entirely. I really need to know! I have very few brain lesions and many on my spinal cord. There has been no remission since this first started 3 years ago. I turned 49 last week.
He then told me that he could understand the difficult situation that I am in between him and the other neuro. He suggested that I go to the Mayo Clinic or Cleveland Clinic and get a third opinion. He said if I did have MS, he would be glad to treat me. I told him I thought I needed something for depression and he suggested Cymbalta. I told him that I reacted badly to that and he didn't offer any other alternatives. He told me to continue my medications until I saw someone else(early on he suggested I needed none of them) since they seemed to be working for me...Did I miss something here???? He did not set a return appointment for me. He had told me at least three times earlier he told me that he does not usually see Dr. Hxxxxr's patients....
Sorry this is rambling! I tried to condense as much as possible. Any thoughts, suggestions, or advice? Please!
Thank you,
Colin
He basically told me that my former DR whom I love and respect too easily diagnosed people with MS and that he had some kind of "God" complex. When I paid out of pocket last month to have my old neuro read my MRI, I told him that I had an appointment at Vandy. He told me that "they aren't very friendly, they are dismissive of women's symptoms and they will probably suggest it's your hormones".
Today's neuro told me that my MRI"s were completely normal. When I told him that the other neuro had went over them with me and pointed out lesions in various places including Dawson's fingers. He wanted me to show him where! I sent my husband to the truck to get a copy of the first MRI report that had images of my scans with little arrows pointing to the lesions he had found. he looked at one after the other and would say, "I can see why he would say that". He back pedaled a bit and said I may have MS, but if I do, there is not enough evidence to diagnose me.
He suggested that it was my hormones that was causing my memory problems and to have them checked again(they were normal earlier this year)! He is thinking that my diagnosis is Mixed Connective Tissue Disorder and ordered some blood work. He also referred me to a urologist since I've had several bladder infections treated with antibiotics which then cause yeast infections. I briefly did a search on this and I'm not convinced but am open to exploring other avenues.
He kept pressing that I had been going to the other neuro for a year and do not feel any better. He asked if the Aubagio made me feel any better. I told him no but that it was my understanding that DMD's don't treat symptoms. It was like he was trying to ask questions that would somehow prove that me and/or the other neuro are quacks! He said 2 or 3 times that I had no O bands in my spinal fluid. I finally said that I didn't think that o bands would necessarily prove or disprove MS that my understanding was that it is mostly a clinical diagnosis made after excluding other MS mimics.
I told him that the best news, ever, would be that I didn't have MS but that I do have something going on and I just want to feel better. I told him from my research that I have come to believe that I have a progressive form of MS or I have something else entirely. I really need to know! I have very few brain lesions and many on my spinal cord. There has been no remission since this first started 3 years ago. I turned 49 last week.
He then told me that he could understand the difficult situation that I am in between him and the other neuro. He suggested that I go to the Mayo Clinic or Cleveland Clinic and get a third opinion. He said if I did have MS, he would be glad to treat me. I told him I thought I needed something for depression and he suggested Cymbalta. I told him that I reacted badly to that and he didn't offer any other alternatives. He told me to continue my medications until I saw someone else(early on he suggested I needed none of them) since they seemed to be working for me...Did I miss something here???? He did not set a return appointment for me. He had told me at least three times earlier he told me that he does not usually see Dr. Hxxxxr's patients....
Sorry this is rambling! I tried to condense as much as possible. Any thoughts, suggestions, or advice? Please!
Thank you,
Colin
Scrawny Rat is covering his backside as far as I can see. That is why he is saying he "wasn't certain" in that sentence because he knows you could be dx'd by someone else in the future.
If you were dx'd by the next Neuro he has the statement you quoted & can just say well I just wasn't certain when I saw you. I wouldn't worry too much about anything this Neuro has to say to you or anybody else. You have your referral which is great news.
Start a fresh with the new Neuro & fingers crossed you get some answers this time. I would only get EP done with your new Neuro if he's requests them.
Take Care
Karry.
If you were dx'd by the next Neuro he has the statement you quoted & can just say well I just wasn't certain when I saw you. I wouldn't worry too much about anything this Neuro has to say to you or anybody else. You have your referral which is great news.
Start a fresh with the new Neuro & fingers crossed you get some answers this time. I would only get EP done with your new Neuro if he's requests them.
Take Care
Karry.
HTLV-1 human T-cell lymphotropic virus type 1: a type of retrovirus that causes a rare form of leukemia.
Sounds like he is trying to scare you into doing the Evoked Potentials "EP" so that he gets more money out of you.
Dennis
Sounds like he is trying to scare you into doing the Evoked Potentials "EP" so that he gets more money out of you.
Dennis
Got another message from the scrawny rat through his nurse on my voicemail. "He wasn't certain but that he thought that you did not have MS" and would like to do EP's, etc. WHAT does that mean???
I tried to return the call but was on hold for about 12 minutes and gave up. I emailed and said that since he thought that I didn't have MS and the other neuro says I do, I would like to be seen by a fresh set of eyes.
They messaged back and said they were putting in a referral for me at Cleveland Clinic and were putting in notes for them to test me for HTLV-1.
Does anyone know anything about this?
Oh, and I love cheese....
I tried to return the call but was on hold for about 12 minutes and gave up. I emailed and said that since he thought that I didn't have MS and the other neuro says I do, I would like to be seen by a fresh set of eyes.
They messaged back and said they were putting in a referral for me at Cleveland Clinic and were putting in notes for them to test me for HTLV-1.
Does anyone know anything about this?
Oh, and I love cheese....
Good for you to set the traps, gather the records and move on. And thanks for the chuckles, everyone! I'm always glad to see MS doesn't take everything and usually leaves our sense of humor intact.
BTW there is a great place on I-71 on the drive to Cleveland. Grandpa's Cheese Barn - don't miss it. Really. No rats, just great locally made cheese in the heart of Amish country.
BTW there is a great place on I-71 on the drive to Cleveland. Grandpa's Cheese Barn - don't miss it. Really. No rats, just great locally made cheese in the heart of Amish country.
Good for you. Just in case you are faced with anymore "scrawny rats" as you don't know who's just waiting around the corner....I highly recommend a perfume "old cheese" to wear so if you do encounter anymore scrawny rats they will be sniffing the air with pleasure.
Alternatively you could take some nice cheddar in your bag just in case. Lol. I'm trying to be funny :)))) I wish you the best of luck with the new Neuro. Keep us updated.
Take Care
Karry.
Alternatively you could take some nice cheddar in your bag just in case. Lol. I'm trying to be funny :)))) I wish you the best of luck with the new Neuro. Keep us updated.
Take Care
Karry.
Quick update, but first thanks for all the great advice and the humorous comments. They made me smile and chuckle!
I called the scrawny rat's office and told the nurse that we decided that I'd like to be seen at Cleveland Clinic. She told me that the rat had the day off(probably eating cheese that my dime paid for, the insurance claim has already been filed!) and that they would contact me next week after they gave him the message.
I was at work and when I checked my phone and there was a message to call back the office of the big, fat, scrawny rat. I called back and there was a message for me. The BFSR wants to know if you would be willing to have evoked potentials done at Vanderbilt?
I told her that I had them done about a year ago and that the rat has the records. I said that the big headed scrawny rat said that he didn't think I had MS and that I thought with that being said, with the 20 plus pills a day that I'm taking to treat a disease that I don't have according to him-it would probably be in my best interest to get a third opinion ASAP. Has anyone seen my arm? She said, "Oh, yeah. I can see your point". She will leave a message for Big, fat, full of cheese scrawny rat and I'll be contacted next week.
Where's the exterminator when you need him?
I called the scrawny rat's office and told the nurse that we decided that I'd like to be seen at Cleveland Clinic. She told me that the rat had the day off(probably eating cheese that my dime paid for, the insurance claim has already been filed!) and that they would contact me next week after they gave him the message.
I was at work and when I checked my phone and there was a message to call back the office of the big, fat, scrawny rat. I called back and there was a message for me. The BFSR wants to know if you would be willing to have evoked potentials done at Vanderbilt?
I told her that I had them done about a year ago and that the rat has the records. I said that the big headed scrawny rat said that he didn't think I had MS and that I thought with that being said, with the 20 plus pills a day that I'm taking to treat a disease that I don't have according to him-it would probably be in my best interest to get a third opinion ASAP. Has anyone seen my arm? She said, "Oh, yeah. I can see your point". She will leave a message for Big, fat, full of cheese scrawny rat and I'll be contacted next week.
Where's the exterminator when you need him?
Colin -
As others have said, I would run away from a doctor that was willing to trash talk another doctor. He's willing to treat you if someone else diagnoses you? Run very fast!
One suggestion I would make is not to share the opinions of any other doc with the doc you are sitting in front of. It just muddies the waters. Present the facts, including discs of MRI and radiology reports, and let them do the heavy lifting.
Finding the right doc is very important. If you do have MS it's going to be like a marriage. Have you spoken with the local chapter of the NMSS? It looks like they have MS Navigators who can help sort this stuff out.
Kyle
http://www.nationalmssociety.org/chapters/kyw/ms-navigator-information-referral/index.aspx
As others have said, I would run away from a doctor that was willing to trash talk another doctor. He's willing to treat you if someone else diagnoses you? Run very fast!
One suggestion I would make is not to share the opinions of any other doc with the doc you are sitting in front of. It just muddies the waters. Present the facts, including discs of MRI and radiology reports, and let them do the heavy lifting.
Finding the right doc is very important. If you do have MS it's going to be like a marriage. Have you spoken with the local chapter of the NMSS? It looks like they have MS Navigators who can help sort this stuff out.
Kyle
http://www.nationalmssociety.org/chapters/kyw/ms-navigator-information-referral/index.aspx
Just to clarify about the Mayo Clinic--
We say "Hold the Mayo" because so many of our members have been frustrated by their many difficult neuros and bizarre diagnostic standards when it comes to MS. Of course there may be exceptions but in general, hold the Mayo!
In your shoes I'd certainly stay away from the one making the unprofessional comments. But there are many other competent neuros out there. You want one specializing in MS, and if there's an honest-to-goodness MS center at not too great a distance, try there. If you will have to travel, Cleveland Clinic is a good bet, and there are many others. I go to Hopkins, because I'm near there.
Whether you want yet a third opinion is strictly up to you, in any case. Eliminating the crazy one leaves you with one you do trust. If he is not in your insurance network that could get pricey fast, though, in case you'd want him not just for diagnosis but also for treatment.
Why not look around and see what your other options are?
ess
We say "Hold the Mayo" because so many of our members have been frustrated by their many difficult neuros and bizarre diagnostic standards when it comes to MS. Of course there may be exceptions but in general, hold the Mayo!
In your shoes I'd certainly stay away from the one making the unprofessional comments. But there are many other competent neuros out there. You want one specializing in MS, and if there's an honest-to-goodness MS center at not too great a distance, try there. If you will have to travel, Cleveland Clinic is a good bet, and there are many others. I go to Hopkins, because I'm near there.
Whether you want yet a third opinion is strictly up to you, in any case. Eliminating the crazy one leaves you with one you do trust. If he is not in your insurance network that could get pricey fast, though, in case you'd want him not just for diagnosis but also for treatment.
Why not look around and see what your other options are?
ess
I agree with the others, that neuro B has a problem with neuro A. Makes me wonder what neuro A would say about B.
Either way, I wouldn't put a dime's worth of stock in B's opinion on the weather. Ever see "Monty Python and the Holy Grail?". "Your arm's off!"
Given the choice of Mayo vs. Cleveland Clinic, there's no question. Mayo has their own, more stringent requirements for a dx of MS, for no apparent reason. That's been discussed here multiple times, in my 5 years here.
Our best to you on your journey.
Either way, I wouldn't put a dime's worth of stock in B's opinion on the weather. Ever see "Monty Python and the Holy Grail?". "Your arm's off!"
Given the choice of Mayo vs. Cleveland Clinic, there's no question. Mayo has their own, more stringent requirements for a dx of MS, for no apparent reason. That's been discussed here multiple times, in my 5 years here.
Our best to you on your journey.
COMMUNITY LEADER
Hey Colin,
Whilst it's not particularly uncommon to hear 'god complex' as a description of someone's neurologists, it would have to be the first time i've heard it, stated from another neurologist!
I think i'm missing something too, um you don't have MS because this neuro has an issue with the dxing specialising in MS neuro.....but wait looking at the evidence, well you might have MS?! He's not going to take you on as an MS patient but 'if' you see someone other than the neuro he doesn't like, and get dx with MS again, then he'll happily treat you.
Your in a difficult position due to no fault of your medical history but prior bad history between colleges! I don't think he could see past his own predispose prejudice towards dx given by the other neurologist, i wouldn't trust his words or opinion just on that alone.
Hugs........JJ
ps there a common saying on line of hold the mayo
Whilst it's not particularly uncommon to hear 'god complex' as a description of someone's neurologists, it would have to be the first time i've heard it, stated from another neurologist!
I think i'm missing something too, um you don't have MS because this neuro has an issue with the dxing specialising in MS neuro.....but wait looking at the evidence, well you might have MS?! He's not going to take you on as an MS patient but 'if' you see someone other than the neuro he doesn't like, and get dx with MS again, then he'll happily treat you.
Your in a difficult position due to no fault of your medical history but prior bad history between colleges! I don't think he could see past his own predispose prejudice towards dx given by the other neurologist, i wouldn't trust his words or opinion just on that alone.
Hugs........JJ
ps there a common saying on line of hold the mayo
I guess another opinion would help. If there is any chance that you have MCTD then you really would need to see a Rheumatologist as they are the experts there. You would require different immunosuppressive drugs & it's important you are monitored closely. Did you have any positive markers such as ANA, LA, ESR, CRP & are you suffering from any symptoms that could relate to such a dx?
I guess I would probably go to both a Rheumy & a Neuro. I would not suggest any particular condition to them & let them assess you. As you are on treatment for MS it will be clear to any doctor you have problems of a specific nature. I am all to aware of how important it would be to address the MCTD or chance of any other rheumatological problems because of what parts of the body these conditions can attack. It's like with my RA can cause problems with my heart, eyes & lungs so it's not just the joints involved in each & every case. If you had a lot of the lupus or SLE going on then it can cause kidney damage as well.
I'm unsure of what testing this Neuro based his opinions on but you need to be thoroughly checked out by both specialities. I live in Australia so I can't recommend where you should go.
Take care,
Karry.
I guess I would probably go to both a Rheumy & a Neuro. I would not suggest any particular condition to them & let them assess you. As you are on treatment for MS it will be clear to any doctor you have problems of a specific nature. I am all to aware of how important it would be to address the MCTD or chance of any other rheumatological problems because of what parts of the body these conditions can attack. It's like with my RA can cause problems with my heart, eyes & lungs so it's not just the joints involved in each & every case. If you had a lot of the lupus or SLE going on then it can cause kidney damage as well.
I'm unsure of what testing this Neuro based his opinions on but you need to be thoroughly checked out by both specialities. I live in Australia so I can't recommend where you should go.
Take care,
Karry.
Thanks Dennis and Karry! My other neuro does not take my new insurance so I was trying to get "In-Network" care. $200 out of pocket for an appointment may be worth it after all...
Do you think I should get another opinion?
Do you think I should get another opinion?
I agree with Dennis. I also think he is the one with the god complex & obviously dislikes your previous Neuro. That does not give this Neuro permission to treat you the way he did. He should have put his problems aside & assess you properly & treat you with respect.
Remember they get paid well to see you & they are no different to any other service provider on the planet. Some may think they are!!! Don't waste you're time on him. I remember it was once said "don't trip over the scrawny rat scurrying out the door" I think that you may have just met that rat.
So sorry for this awful experience.
Take Care,
Karry.
Remember they get paid well to see you & they are no different to any other service provider on the planet. Some may think they are!!! Don't waste you're time on him. I remember it was once said "don't trip over the scrawny rat scurrying out the door" I think that you may have just met that rat.
So sorry for this awful experience.
Take Care,
Karry.
Colin,
My impression from what you wrote is that if you had walked in missing your right arm and your other doctor has said that you right arm was missing this doctor would have said your arm is still there and working perfectly. :)
So why the switch in Neuro's if you liked the other doctor?
Dennis
My impression from what you wrote is that if you had walked in missing your right arm and your other doctor has said that you right arm was missing this doctor would have said your arm is still there and working perfectly. :)
So why the switch in Neuro's if you liked the other doctor?
Dennis
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
