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Mayo clinic and Diagnosis Experiences?
I am going to take some advice given to me earlier and post this question: If anyone has been to the may clinic to get a diagnosis of MS, would you mind sharing your experience with me? I have heard some good things and then some bad things and I would really appreciate any stories that could be shared as I am really nervous about going. Thank You!
Hello This is my first reply but I read this site on a regular basis.
I was diagnosed with MS in 2006. I live in summerville, SC.
I have a wonderful local neuro but he does not specialize in MS. My main problem is optic neuritis which no one seems to be able to fix. I spend alot of time on steroids. I have taken Avonex for the last 3 years. However last year I was on steroids every three months. My neuro sent me to Mayo in Florida for a second opioion. I saw Elizabeth Shuster. I loved her. She looked over all my records, Talked to me and my husband. Answered all my questions. she really cared. Even if you find a local neuro I recommend you keep your appt at the mayo she will work with your local neuro. I find combined opinions are wonderful.
Good luck I know this is a stressful time. I am changing meds, it is hard to get use to new things, but doing nothing is not an option.
I was diagnosed with MS in 2006. I live in summerville, SC.
I have a wonderful local neuro but he does not specialize in MS. My main problem is optic neuritis which no one seems to be able to fix. I spend alot of time on steroids. I have taken Avonex for the last 3 years. However last year I was on steroids every three months. My neuro sent me to Mayo in Florida for a second opioion. I saw Elizabeth Shuster. I loved her. She looked over all my records, Talked to me and my husband. Answered all my questions. she really cared. Even if you find a local neuro I recommend you keep your appt at the mayo she will work with your local neuro. I find combined opinions are wonderful.
Good luck I know this is a stressful time. I am changing meds, it is hard to get use to new things, but doing nothing is not an option.
Chrisy, thank you so much for your reply. I am truly starting to doubt whether the Mayo Clinic is right for me or not, even though it is the one in FL. I do see an MS specialist here in town on the 1st so maybe this can all stop there. I am so frustrated and right now am feeling horrible, I have these weird burning, stabbing itching pains running down my right leg and my focus is absolutely horrible. I am so miserable, so hopefully this MS specialist will help me. I truly do appreciate the comment and hearing how your visit went because it prepares me for mine. I am starting to realize that there are a lot of neuros that are dismissive and arrogant!! I truly wish you the best with the neuro you have now!!
I went to the Mayo clinic in Scottsdale, AZ last January. (01/09)
At the time that I went to Mayo, I had only seen one neuro in my hometown, who didn't know what what causing my symptoms & didn't seem to care. I had been through the wringer with a bunch of other doctors and various symptoms by that point & was totally frustrated - thus my decision to try the Mayo clinic.
My experience was that it is a very well run facility, but the neurologist that I saw (a general neuro), was arrogant and dismissive. He didn't want to see my list of symptoms, or my timeline - which totally threw me for a loop & I ended up feeling like I didn't explain what was going on with my health very well...
He ran a bunch of tests, did not see the need to repeat my Brain MRI, and at the end - told me that "people have these sorts of symptoms & we don't know why" and "maybe you are being to aware of your symptoms" and "I think there is something going on, but until something shows up on a test, there isn't anything we can do".
His final statement to me: "go home & try not to think about it".
I also saw the Gastroenterology department while I was there - as I have a lot of GI issues that have come up with my other symptoms.
The GI doctors - there were 2 - were absolutely wonderful!!! Every person that I came into contact with in the GI department was wonderful. They basically told me that I was already getting excellent care at home & made a few suggestions. I also had a dilation of the esophagus while I was there - which has helped me immensely.
After getting home from Mayo I went into a deep funk. I began to doubt whether I was really having these symptoms, or if it really was all in my head....it was a very difficult time for me emotionally.
My husband turned me around when he said "this is not in your head. and just because you went to the Mayo clinic, doesn't mean that you saw the right or the best doctor. You need to keep looking for the answers." I realized that he was right.
In April, I found a new Internist, from a referral from my Mother in law. I took everything I had, tests, notes, timelines everything. I told her that I needed a direction and what or where did she think I should go next.
Her reply: I think you need to be seen by a neurologist who specializes in MS. Here are 2 that I know well, do some research on them & let me know who you would like to see and I will make it happen. I made my decision, she made it happen and I saw my new MS neuro for the first time in May.
The MS neuro looked at my Brain MRI from July 2007 (yes 2007, the same MRI that the local neuro & the Mayo neuro both said was "normal")....and showed me a lesion in my Corpus Collosum. She said there are few things that cause a lesion here, and since everything else has been ruled out, MS must be seriously considered. So I am currently being monitored to see how things progress.
Would I recommend Mayo to anyone? Probably not. UNLESS, you have already been diagnosed (and not with MS - I wouldn't recommend anyone who suspects or has been diagnosed with MS to go there) with something...maybe I would consider going there for treatment.
Sorry so long winded, just wanted to give you another perspective.
Hugs,
Chrisy
At the time that I went to Mayo, I had only seen one neuro in my hometown, who didn't know what what causing my symptoms & didn't seem to care. I had been through the wringer with a bunch of other doctors and various symptoms by that point & was totally frustrated - thus my decision to try the Mayo clinic.
My experience was that it is a very well run facility, but the neurologist that I saw (a general neuro), was arrogant and dismissive. He didn't want to see my list of symptoms, or my timeline - which totally threw me for a loop & I ended up feeling like I didn't explain what was going on with my health very well...
He ran a bunch of tests, did not see the need to repeat my Brain MRI, and at the end - told me that "people have these sorts of symptoms & we don't know why" and "maybe you are being to aware of your symptoms" and "I think there is something going on, but until something shows up on a test, there isn't anything we can do".
His final statement to me: "go home & try not to think about it".
I also saw the Gastroenterology department while I was there - as I have a lot of GI issues that have come up with my other symptoms.
The GI doctors - there were 2 - were absolutely wonderful!!! Every person that I came into contact with in the GI department was wonderful. They basically told me that I was already getting excellent care at home & made a few suggestions. I also had a dilation of the esophagus while I was there - which has helped me immensely.
After getting home from Mayo I went into a deep funk. I began to doubt whether I was really having these symptoms, or if it really was all in my head....it was a very difficult time for me emotionally.
My husband turned me around when he said "this is not in your head. and just because you went to the Mayo clinic, doesn't mean that you saw the right or the best doctor. You need to keep looking for the answers." I realized that he was right.
In April, I found a new Internist, from a referral from my Mother in law. I took everything I had, tests, notes, timelines everything. I told her that I needed a direction and what or where did she think I should go next.
Her reply: I think you need to be seen by a neurologist who specializes in MS. Here are 2 that I know well, do some research on them & let me know who you would like to see and I will make it happen. I made my decision, she made it happen and I saw my new MS neuro for the first time in May.
The MS neuro looked at my Brain MRI from July 2007 (yes 2007, the same MRI that the local neuro & the Mayo neuro both said was "normal")....and showed me a lesion in my Corpus Collosum. She said there are few things that cause a lesion here, and since everything else has been ruled out, MS must be seriously considered. So I am currently being monitored to see how things progress.
Would I recommend Mayo to anyone? Probably not. UNLESS, you have already been diagnosed (and not with MS - I wouldn't recommend anyone who suspects or has been diagnosed with MS to go there) with something...maybe I would consider going there for treatment.
Sorry so long winded, just wanted to give you another perspective.
Hugs,
Chrisy
Hi! We haven't met, but I sed to dance a pretty good Limbo around here, back in the day. I don't come around much, but Quix wanted me to answer your question re Mayo, since I was in Rochester last October.
I tried posting a bit ago, and it was quite lengthy -- ask anyone who knows me -- I can be long-winded!
Unfortunately, my post is off to the Netherworld of cyberspace -- It somehow didn't go through.
I'll compose myself and compose again in just a bit! To warn you about my visit -- It ain't pretty!
Take care and feel well in the meantime. Peace,
Momzilla*
I tried posting a bit ago, and it was quite lengthy -- ask anyone who knows me -- I can be long-winded!
Unfortunately, my post is off to the Netherworld of cyberspace -- It somehow didn't go through.
I'll compose myself and compose again in just a bit! To warn you about my visit -- It ain't pretty!
Take care and feel well in the meantime. Peace,
Momzilla*
Thank you so much for your comment. I keep hearing this same thing from others as well and am really concerned. I don't want to suffer any more. I am so tired of no diagnosis. I go see an MS specialist here in town on Feb 1 and I am thinking that if she does come up with a diagnosis of MS or whatever this may be, I may forgo the trip to Mayo. IF she cannot figure out what is going on I will have no choice but to go and hope for the best. It seems the one in FL is getting great reviews from people and the specific Neuro I will be seeing there, I have gotten a really good review on her from someone who saw her. I guess all I can do is hope for the best and hope that whatever is going on with me doesn't get so bad that nothing will help it.
I've been on the forum well over 2 years, and in that time, for every favorable comment I've read about Mayo I've read at least 10 negative ones. Not only extremely rude and arrogant treatment, but dismisssive neuros who often don't bother to do an examination before pronouncing their verdicts from on high.
And since they have different standards regarding MS from the entire rest of the knowledgeable world, even those they condescend to diagnose are unlikely to get treatment till past the time when the DMDs do the most good.
So many people here have suffered for years, then go to Mayo hoping for answers at last. The huge majority have come away angry, sad and disillusioned.
ess
And since they have different standards regarding MS from the entire rest of the knowledgeable world, even those they condescend to diagnose are unlikely to get treatment till past the time when the DMDs do the most good.
So many people here have suffered for years, then go to Mayo hoping for answers at last. The huge majority have come away angry, sad and disillusioned.
ess
I feel your frustration! I hope your new MRI will give them more answers. I have not had a lumbar puncture yet because the neuro's I have seen so far don't even take me seriously and wouldn't even look at my symptom charts I brought to them. I had kept charts on a daily basis through my last episode so they could see exactly what I was experiencing and they blew them off. It was so upsetting because I had a hard time keeping those charts..my husband helped me with them because I was so out of it!
Thank you for answering my questions. It helps me to hear other peoples stories and to know that I am not alone in all of this.
Thank you for answering my questions. It helps me to hear other peoples stories and to know that I am not alone in all of this.
Yes I had one lesion in the brain and I had 8 bands in the spinal fluid.
I know it is so frustrating. I just keep pressuring them for answers. I feel like I call my dr every week. But I go for another MRI tomorrow. Maybe that will answer some questions.
I know it is so frustrating. I just keep pressuring them for answers. I feel like I call my dr every week. But I go for another MRI tomorrow. Maybe that will answer some questions.
OH, I wanted to ask you, did your MRI show lesions? (If you don't mind me asking) and the outcome of your lumbar puncture, was it abnormal?
Thanks so much for responding. I can understand your frustration of them not starting treatment until another episode! I have been dealing with that for years, the problem is I keep having episodes and no one wants to treat because they can't seem to get it together enough to figure out what it is!
Thank you for sharing your story! I will be going to the one in FL and I did get a great response about the clinic and the doctor I am seeing there, so that is promising! I wish you much luck in dealing with your diagnosis and symptoms and I wish you didn't have to have another episode to get treatment!
Thank you for sharing your story! I will be going to the one in FL and I did get a great response about the clinic and the doctor I am seeing there, so that is promising! I wish you much luck in dealing with your diagnosis and symptoms and I wish you didn't have to have another episode to get treatment!
Hi janereed,
I went to the Mayo Clinic in Rochester, MN in Oct 09. When I first walked in it was a dr that was training to be a consulting dr and he told me that they believed I had a stroke and that I was gonna stay like I was without improving. Well I blew up at him because he hadn't even examined me or anything. And all my other dr's from home had ruled out a stroke and said MS.
Well the consulting dr. (Dr. Keegan) came in and did an examination and was very nice. He said he also thought it was a stroke but that I was doing very well and within time they thought I would recover fully. Well after doing another 2 1/2 hr MRI and lumber puncture they said they were initially wrong and dx with CIS.
They were really nice but at first the dr should of did an examination before telling a 25 year old they had a stroke and wasn't going to improve. But I met alot of nice people there.
Overall I had a nice expierence and I would certainly go again. The only thing that I do not agree with is that they do not want to start treatment until I have another episode.
But good luck to you!!!
I went to the Mayo Clinic in Rochester, MN in Oct 09. When I first walked in it was a dr that was training to be a consulting dr and he told me that they believed I had a stroke and that I was gonna stay like I was without improving. Well I blew up at him because he hadn't even examined me or anything. And all my other dr's from home had ruled out a stroke and said MS.
Well the consulting dr. (Dr. Keegan) came in and did an examination and was very nice. He said he also thought it was a stroke but that I was doing very well and within time they thought I would recover fully. Well after doing another 2 1/2 hr MRI and lumber puncture they said they were initially wrong and dx with CIS.
They were really nice but at first the dr should of did an examination before telling a 25 year old they had a stroke and wasn't going to improve. But I met alot of nice people there.
Overall I had a nice expierence and I would certainly go again. The only thing that I do not agree with is that they do not want to start treatment until I have another episode.
But good luck to you!!!
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