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Have you visited Mayo Clinic in Rochester, MN for a diagnosis?
My neurologist and specialists don't know what I have and recommended me to go to Mayo Clinic in Rochester, MN.
If you went there, please share your experience. I'm afraid it's too expensive and I can't afford it. Don't have any idea how long could it take if I travel there to have all the doctor visits and tests done.
If not, do you know any good neurologist or academic institution specialized in neurological / autoimmune diseases in Southern California? So far I only have some contact names in University of San Francisco but it's too far away from me.
If you went there, please share your experience. I'm afraid it's too expensive and I can't afford it. Don't have any idea how long could it take if I travel there to have all the doctor visits and tests done.
If not, do you know any good neurologist or academic institution specialized in neurological / autoimmune diseases in Southern California? So far I only have some contact names in University of San Francisco but it's too far away from me.
Thanks for your comment! I have some names in UCSF for a good neurologist and specialist in autoimmune diseases. Definitely SF is closer for me than MN, so this looks like a good option. My doctor will refer me to a new neurologist in my area and after I have his opinion I will decide what to do and ask for a referral to UCSF.
"This is a business......."
Very sad. Something fundamentally flawed about that!
UCSF has an excellent neurology dept. I'm a little confused when you say it's too far from you in S. Cal. yet Mayo is much farther away? In any event, I've met several patients who are seen at UCSF and are very happy there. Based on that and their standing in the neurology field, I would have confidence going there.
Very sad. Something fundamentally flawed about that!
UCSF has an excellent neurology dept. I'm a little confused when you say it's too far from you in S. Cal. yet Mayo is much farther away? In any event, I've met several patients who are seen at UCSF and are very happy there. Based on that and their standing in the neurology field, I would have confidence going there.
You have some good facilities there on the west coast and San Francisco is one of them. If you are going to travel for treatment/answers, may I suggest Cleveland Clinic instead of Mayo? They get pretty good reviews from our folks here and have a world recognized MS Clinic with the Mellen Center.
good luck, Laura
good luck, Laura
Thanks for sharing your story. Looks like the same situation I am dealing with my own specialists. They are not communicating and each one blames the other one for the cause of my symptoms. I'm the one who has to guide each doctor and defend myself trying to get answers.
I am going to visit 1 more specialist (Neurosurgeon) and wait for my final appointments with Neurologist, Cardiologist, Endocrinologist and Rheumatologist by the end of september and depending what they say I'm going to ask them for a written final report and look for help in Mayo Clinic or any University.
I am going to visit 1 more specialist (Neurosurgeon) and wait for my final appointments with Neurologist, Cardiologist, Endocrinologist and Rheumatologist by the end of september and depending what they say I'm going to ask them for a written final report and look for help in Mayo Clinic or any University.
One more example - My brother's wife's family lives near Rochester, so her mom had open heart surgery there just about 3 or 4 wks ago.
The surgery went "good" and then she was taken to recovery or ICU. Anyway, a few hrs after the surgery, she woke up yelling, "Help!" and she then had a heart attack. They rushed her back into surgery to save her/fix it. That surgery took 3 hrs longer than the original 5 hr surgery. After that, her heart rhythm wouldn't stay stable, so had to take her back in and use the paddles on her to zap her heart back to normal. She then had a stroke. Then she went into kidney failure. After that, had to take her back in again to the OR to put her out to zap her heart again back into rhythm.
I guess that it's good that she's still alive. I'm not sure if she would have had all of these problems if she would have had the surgery at another hospital. Or if she would have still had all of these problems, but another hospital may not have been able to save her. Who knows at this point.
The surgery went "good" and then she was taken to recovery or ICU. Anyway, a few hrs after the surgery, she woke up yelling, "Help!" and she then had a heart attack. They rushed her back into surgery to save her/fix it. That surgery took 3 hrs longer than the original 5 hr surgery. After that, her heart rhythm wouldn't stay stable, so had to take her back in and use the paddles on her to zap her heart back to normal. She then had a stroke. Then she went into kidney failure. After that, had to take her back in again to the OR to put her out to zap her heart again back into rhythm.
I guess that it's good that she's still alive. I'm not sure if she would have had all of these problems if she would have had the surgery at another hospital. Or if she would have still had all of these problems, but another hospital may not have been able to save her. Who knows at this point.
This is going to be kind of long -
Well, when I went there, it wasn't for MS. It was for unintended weight loss, probably carcinoid syndrome, and to see whether or not I for sure had celiac's disease or not (my duodenum biopsy & how it looked inside met the gold standard for it at the Univ, but the blood test was negative at the Univ). Besides the weight loss, I had flushing, tachycardia, chronic fevers, going to the bathroom a lot (loss of about 15-20% of my body weight at that time.
They send you from doctor to doctor, yet, somehow don't really communicate with one another. They did scopes & said they didn't see Celiac's (however a subsequent scope at the Univ still shows it). Mayo did all sorts of testing. The GI doc thought the fevers were unrelated to the other issues so he sent me to their infectious disease doc. She said they're all totally related since they all started at the same time. And said she didn't agree with him. She said what I had kind of sounded like systemic mastocytosis. Off I went to go see an allergy doc there & they found my tryptase was elevated, but not enough to say that I had it.
In the mean time the GI doc also sent me to a nutritionist and she asked what I ate on an avg day. I told her I was eating about 2300 calories and losing all this weight. She said that was good, just keep eating that much & I should gain a pound a week. I told her that she didn't understand - that's what I've been eating all along. She said that I was eating enough and didn't know what was going on and just looked at me with a blank face.
The GI doc did a 72 hr fat test on me that came back elevated for fat malabsorpsion - per Mayo's lab, normal is below 7g and mine was 9g/24 hrs.
In the end, the GI doc sent a letter to my primary saying that I basically had IBS and had normal testing for fat absorpsion since it wasn't above 10g - (his own made up number for what he considers "normal" based on 10% of fat consumed during the day). And I just needed to eat more. On top of this, I had tried to call & e-mail the allergy doc several times & he never responded to me.
I wrote a letter of complaint to Mayo/the GI doc saying that someone with IBS doesn't have flushing, tachycardia, off & on fevers daily, and that much weight loss. And I told them that contrary to what he sent in his letter, I did have fat malabsorpsion per their very own lab. Also reminded them that I had called and said when I sent in the specimen, the lowest amount of fat I ate in one day was 84grams during the test, not the required 100grams & his nurse had told me that it didn't really matter (apparently she was unaware of his 10% rule). And I said in my letter that if he would have talked with the nutritionist, she told me that I'm eating more than I should have to eat to maintain my weight - that in fact, I should be gaining a pound a wk.
The GI doc wrote back, that, yes, IBS wouldn't cause all of this, but wouldn't chang my medical record.
Sorry for the long story. They were organized, yet unorganized. And each doctor seemed to have their own idea that was different than the other doctors and no one talked to one another and apparently, some of the doctors there make up their own standard for tests based on their own criteria - because they're that great - they don't have to follow the set standards.
Well, when I went there, it wasn't for MS. It was for unintended weight loss, probably carcinoid syndrome, and to see whether or not I for sure had celiac's disease or not (my duodenum biopsy & how it looked inside met the gold standard for it at the Univ, but the blood test was negative at the Univ). Besides the weight loss, I had flushing, tachycardia, chronic fevers, going to the bathroom a lot (loss of about 15-20% of my body weight at that time.
They send you from doctor to doctor, yet, somehow don't really communicate with one another. They did scopes & said they didn't see Celiac's (however a subsequent scope at the Univ still shows it). Mayo did all sorts of testing. The GI doc thought the fevers were unrelated to the other issues so he sent me to their infectious disease doc. She said they're all totally related since they all started at the same time. And said she didn't agree with him. She said what I had kind of sounded like systemic mastocytosis. Off I went to go see an allergy doc there & they found my tryptase was elevated, but not enough to say that I had it.
In the mean time the GI doc also sent me to a nutritionist and she asked what I ate on an avg day. I told her I was eating about 2300 calories and losing all this weight. She said that was good, just keep eating that much & I should gain a pound a week. I told her that she didn't understand - that's what I've been eating all along. She said that I was eating enough and didn't know what was going on and just looked at me with a blank face.
The GI doc did a 72 hr fat test on me that came back elevated for fat malabsorpsion - per Mayo's lab, normal is below 7g and mine was 9g/24 hrs.
In the end, the GI doc sent a letter to my primary saying that I basically had IBS and had normal testing for fat absorpsion since it wasn't above 10g - (his own made up number for what he considers "normal" based on 10% of fat consumed during the day). And I just needed to eat more. On top of this, I had tried to call & e-mail the allergy doc several times & he never responded to me.
I wrote a letter of complaint to Mayo/the GI doc saying that someone with IBS doesn't have flushing, tachycardia, off & on fevers daily, and that much weight loss. And I told them that contrary to what he sent in his letter, I did have fat malabsorpsion per their very own lab. Also reminded them that I had called and said when I sent in the specimen, the lowest amount of fat I ate in one day was 84grams during the test, not the required 100grams & his nurse had told me that it didn't really matter (apparently she was unaware of his 10% rule). And I said in my letter that if he would have talked with the nutritionist, she told me that I'm eating more than I should have to eat to maintain my weight - that in fact, I should be gaining a pound a wk.
The GI doc wrote back, that, yes, IBS wouldn't cause all of this, but wouldn't chang my medical record.
Sorry for the long story. They were organized, yet unorganized. And each doctor seemed to have their own idea that was different than the other doctors and no one talked to one another and apparently, some of the doctors there make up their own standard for tests based on their own criteria - because they're that great - they don't have to follow the set standards.
Thanks Kelly. I was really considering going there but your comment makes me wonder that maybe I will get the same attitude I'm getting from all my doctors. They only want to spend 5-15 minutes with me and charged me more than $1,000 for a consultation just to tell me they don't know what I have.
On my last visit, my general practice doctor after knowing that all thew specialist he referred me to didn't help me told me "no private doctor or specialist at this point will give you answers". We can't spend the time your case required with only 1 patient. This is a business and we have to see many patients in a day and your case requires a whole day evaluation or more and nobody here in the States will do it. He told me only the Mayo Clinic will spend 1 day or more time evaluating only my case and that he thought that was my only option at this time.
Were they able to give you a diagnosis at Mayo Clinic after this 5 days of tests? Please let me know.
I'm going to try to contact a University closer to my area (UCLA maybe).
On my last visit, my general practice doctor after knowing that all thew specialist he referred me to didn't help me told me "no private doctor or specialist at this point will give you answers". We can't spend the time your case required with only 1 patient. This is a business and we have to see many patients in a day and your case requires a whole day evaluation or more and nobody here in the States will do it. He told me only the Mayo Clinic will spend 1 day or more time evaluating only my case and that he thought that was my only option at this time.
Were they able to give you a diagnosis at Mayo Clinic after this 5 days of tests? Please let me know.
I'm going to try to contact a University closer to my area (UCLA maybe).
I went there in Oct or Nov of last year for 5 days of testing. I would not recommend going there. The doctors that I saw there seemed very arrogant and seem to have tunnel vision. I'd definitely see if you can find a good place closer to you.
Good luck!
-Kelly
Good luck!
-Kelly
our favorite expression with Mayo clinic is "hold the mayo". They diagnose to a different, rather ancient system and have frustrated many members.
I suggest you contact the MS national org, they often suggest places near you.
Many of us, not to discourage you, have spent years and more than a few neuro's chasing the diagnosis we didn't really want.
Welcome to our corner and keep us posted on your travels!
I suggest you contact the MS national org, they often suggest places near you.
Many of us, not to discourage you, have spent years and more than a few neuro's chasing the diagnosis we didn't really want.
Welcome to our corner and keep us posted on your travels!
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